My apologies for posting a non DB subject. But this is CONSUMING me and I would like some input. Especially since I am now living far away from my friends and I can't post this on a social forum.
I moved up north a year ago. I love it here for almost all reasons. But the one thing that has been difficult is the Nursing Agency I am using for my son. The owner/supervisor DRIVES ME NUTS!
When I was moving - I lined up an agency. It had not been easy finding one that met all of my son's medical needs. About a month before we moved - that agency pulled out - stating they were short staffed. They put us on to another agency who agreed to provide the services we needed for the same cost as we currently had.
Just as we were making the move - the new agency told me they actually had to charge us a bit more than we were paying - about 10% more, actually. Then I learned we were also paying $28 a day in "transportation" fees. UGH - but we had no choice. Said agency got involved from the first minute we arrived - literally - on moving day with app 8 people here to learn about Ryan and train with the one staff I brought from home for a day.
One month into it - the new agency was audited and it seems they now had to charge us tax on the services. Another 7%. This huge hit was nearly the last straw. But once again - we had no choice. I had to dip into savings to manage and also accrued a bit of debt. I figured that when my son's insurance increased (once per year) and our handicapped van was paid off (this fall) we would be ok.
Yesterday I received some startling news. After fighting the Taxes for a year - the agency is going to not have to charge us tax on their service. BONUS! And we can apply to get the last year's tax back. Another bonus. (No guarantee we can get it back though). HOWEVER... They have decided to increase their rates by $4 per hour!!! That works out to similar to what we have been paying. So they are trying to snow me into believing I can pay it. SO - they are going to pocket our savings!!!
This agency owner/supervisor drives me NUTS> she is totally inflexible. It has been her way or the highway for the past year. I have nearly lost my mind. Previous agency supervisors I might hear from app every 6 weeks but this one - hardly a day goes by that she does not call me about something. To me it is like her fingernails are scraping the blackboard. The stress is killing me. She has also aggressively driven every therapist, medical sales person etc CRAZY with her demands for Ryan.
Her demands have included numerous other costs to me in the past year including a motorized wheelchair at 12 grand, ceiling lifts of more than a grand, hospital bed, shower chair etc etc etc. She has absolutely no concept of my budget (which I tell her every day) and wants what she wants when she wants it. She also puts great demands on my time - calling me in to look at him constantly or putting more demands on me during the night. (I am a very involved Mom - if I think my son needs me - I'm there - I don't need to be TOLD).
So she tells me the extra costs are to go mostly to my workers. They are to get $3 an hour increase. She says it is the only way they will stay. At present they are making app the same as most other PSW in the area. She says the care Ryan needs is greater than they should have to do.
My other son recently started a new job with a wage increase of $1.50 per hour. He is over the moon. Where does someone go up $3 an hour with no warning??? Am I being naive??
Calls to other agencies a year ago and one last month started off well but dwindled when Ryan's needs were discussed in depth. I am back to the phones again though. Maybe doing some of the work myself would be better than caving in to her demands and getting that monkey off my back.
I really need some input here. How to deal with someone so demanding and unreasonable. I will give her this - the care is great for Ryan. Not so much for me. How do I put a price on the care? And what if I change agencies and something happens to him. I would have to live with that.
HELP!!!
Barb
How many people do you need to care for him? Could you hire individual nurses to meet most of theose needs? Sounds like it is time to think outside of the box. This lady thinks she has you where she wants you, don't let her get away with it.
big hugs, kat
There are 5 or six that come for 12 hours a day either in one shift or 2 6 hours. The problem of hiring individuals is that if they cancel - I'm stuck. I tried it 4 years ago for about 6 months. It was ok at first but then they all started fighting over who was going to get which shifts and it ended up a mess.
I may have to rethink getting a nanny again.
I checked what I wrote about. THey actually are charging us an additional 13% not 7%. and mileage twice a day if they do 2 shifts. That's an additional $28 a day. According to the government agency who pays for a couple of their hours per day - they can't charge me for that mileage but they do it anyway.
Trouble is - they're the only game in town who can handle his complex needs so I am basically stuck.
Josh thinks we should continue with them for the time being but start interviewing any and all other options and dump them like hot potatoes as soon as we can figure out Plan B.
Barb
Get the government on her...maybe write her up or something. Like I said, she knows that she is all you have so she is going to take advantage of that.
Maybe talk to some other caregivers and see if you can't make up a reasonable plan. If anyone can do this, I am sure you can.
Kat
Start your own agency. Do it for a year or two then sell:) You are a business woman who has identified a need. At least the research would inform you but you seem already informed. Might be less work! Wonder
Wonder: I thought of that a couple of years ago. But these days - most are run by an RN and the need for RN involvement is much more important with Ryan these days. I guess part of it is that I really need a break away from it all. This agency puts a lot of demands on me and I've not had much down time since we moved here.
Kat: I think I might have something on her. Trouble is - what she TOLD me that could definitely get her into trouble - she didn't put that part in writing. (she's not stupid). I might have to let her bill me for a month or so in her new plan and then prove to the government that she is withholding taxes.
I have a supervisor with a government run agency who helps me sort things out and she knows her and my situation well. She thinks I should try another agency even though they can't provide for all of his needs. She likens it to the current agency being like having a cadillac (they really do provide excellent care) and maybe the new agency would be a Ford Focus (still nice and reliable but maybe not able to do a perfect job). Hmm...
Tommorrow I'll be phoning around for more info and ideas.
Barb
That woman sounds horrible! She sounds totally unreasonable and not good for your budget or your positive mental health. Maybe you could look into the less expensive agency, and maybe supplement with a part-time nanny if one is needed? I would definitely try to figure out a plan B.
Karen
It is SO frustrating. I have been considering a nanny since we moved here. I think you're on the right track, Karen.
Truly - the take absolutely wonderful care of Ryan and I've never had an agency so reliable before. BUT - she does not know how to "take care" of me. And the caregiver (me) has to be treated well too. If the caregiver stresses out - no one can do this longterm. I have to look after him at night - I don't like her demands on me all day.
Josh thinks we should go along with it for the short term so we don't rush into something new and possibly make a mistake in the process. The one saving grace is that she put in writing that she would not raise the price for the next 3 years. BUT - it just feels all wrong. And it makes me sick.
Barb
Barbie,
I don't really hear anything that sounds unfair. The agency firmed up the details of the contract regarding rate and transportation fees before care began. You might wish their rates and terms were different, but it isn't unfair for them to bill as they do. The tax issue was beyond their control and now you can get that money back. I'm not sure what to think about transportation fees, but she did let you know about them and I guess you'll know soon enough if they are legal. There is a difference between reimbursing for mileage and compensating someone for travel time, so perhaps that matter to what the state allows.
The only issues seem to be:
(1) They are raising the rates.
(2) They involve you too much.
With respect to (1), it sounds to me like the pay raise is likely required to keep people working with you because the position really is much more demanding than other jobs. You seem to be finding this out yourself as other options turn you down because the job is so demanding. If you have skilled people willing to do the job who you trust, it seems unwise to jeopardize that. It also seems rather generous for her to lock in the rate for three years.
With respect to (2), I can definitely see how her style could be too stressful for you. It seems to me that you might even be a bit reactive/feeling victimized precisely because of your stress level (perfectly understandable). Long-term, it wouldn't be good for anyone not to get that under control.
Have you tried being very direct with her? She may have many clients that like the level of contact that she provides and/or her style may work better with other clients because other cases are easier and don't require as many decisions. Perhaps it would be useful to try to think about some boundaries to protect yourself and then share with her what you'd like in a clear, direct, non-emotional way, perhaps via email. Maybe things would get better, maybe not. But no harm in trying as you continue to weigh your options. What exactly would you like to be different with respect to how she involves you in care decisions?
P.S. Is it possible that there is more assistance available given Ryan's changing needs that would help cover the difference?
OT: I can agree with some of what you said. If I keep her on (which, at this point - is the obvious decision based on Ryan's needs) - I intend to be very clear about boundaries. I have a government provided coordinator for Ryan's assistance who provides some care as needed (a couple of hours per day plus ongoing extra assistance as needed - for example - we currently have an RN in once a week to assess his pressure sores). She has dealt with numerous agencies and is the first to agree with me that this woman goes way beyond her limits in terms of crossing the line with EVERYONE. She and the agency she hired (who could not provide the care but subcontracted to the current agency) agree that none of them ever raises more than 5% in a year. I have had complaints from the Occupational Therapist, the Pharmacist, My Disabilities Specialist Vendor and several of the RNs who visit about her demands and inappropriate "crossing the line". She hounds them in a forceful manner and most have told me they will only deal with me. Not her.
In Niagara we paid an agency which raised their rates app 1% annually. This woman agreed to the same rate as that agency when we hired them. One month in they raised it 10%. Then we got hit with the 13% tax situation. She insists I can claim it back but it does not actually look as though I can (I am not working). To add the 13% it outrageous. She knows I struggled to pay it for the past year but now she figures I can afford it. Josh is concerned that even though she says we will not be taxed - no one can assure us of that - we could turn around and get hit with the taxes again.
So - with respect to a fair increase - no - I cannot agree with you. I feel this is a very unfair increase and not in line with what others charge. I feel that she is bullying as she has also made threats to pull out if I don't like it. That doesn't say much about their commitment to Ryan.
The reason the other agencies cannot meet our needs at present is not due to the demands of his care - it is due to their own lack of available staff and the fact we live in a rural area with less workers available. My number one concern is not having staff show up. And unfortunately - in that line of work - it is a frequent thing. One that this agency gets right. So - how do I put a price on that?
Josh has a masters in business. He is very familiar with this situation and is appalled by her actions and lack of negotiating skills. He has attended a couple of case conferences and everyone in the room gets their back up from her. She is a force to be reckoned with. Not good for any of us.
I might end up being happiest with a nanny who can provide some of the care and some of the care provided by a different agency. That way - if someone did not show - the nanny could step in and provide the backup care.
I'm still investigating all possibilities but for now - looks like I have to keep her. UGH UGH UGH.
Barb
Barb,
I am SO sorry you're going through this. And I do think she's taking advantage of her awareness that she's basically the "only game in town" aspect.
Probably her agency runs as well as it does b/c of her toughness in a management capacity -- but obviously since everyone else who has to deal with her in any ancillary capacity regarding Ryan -- agrees with your assessment - it is clear she DOES have very poor people skills.
She runs her business like a drill sergeant -- and clearly expects you to respond like one of her employees rather than as HER employer.
You are frustrated b/c you don't have many options in your new area and she knows it. But you also know that as a caregiver your mental health is vital to Ryan's well-being. And you're strong enough and masterful enough to handle her with kid gloves.
I'm not exactly clear why she expects you to be so available to her during the day -- as that is why you're paying people to care for Ryan so you CAN have some time off.
Is there any reason why you have to always take her calls? Could you tell her that you will be having a new schedule -- and that you will only be available to speak with her at 9 AM for example unless it is a true emergency?
You don't owe her any explanation as to why your schedule - life will now be more regimented - but you certainly DO have the right to set up boundaries for yourself.
You can say you're writing a book or taking up meditation at your doctors insistence -- and you need the total freedom from phone calls distractions etc.
And no matter what you're really doing which BTW is NONE of her damn business ... you do not need to be at her beck and call.
I understand the precariousness of your situation that you must not get her angry at you or alienate her b/c she could just "fire" you and leave you in a lurch.
But you need to come up with some plausible reason why you will no longer be available to take her calls all day long.
And just what is she calling you for and asking you to do?
Just reading about this makes me so upset for you.
I do agree with Josh that for now put up with it -- and come up with a Plan B ... I wish I had the answer but the limited options in your new area make it very difficult.
Good luck!
Love,
Summer
Thank you ladies,
You have really hit on a lot of my points of concern. I am 56 years old and have been managing Ryan's care for exactly half that time - since I was 28. That means I was younger than both of my sons when I became a full-time caregiver - albeit - I was also a mom with very young kids who ran an active business. I also was the ONLY caregiver for Ryan for the first 10 years. Looking back - I have no idea how I did it.
But having been in business, I learned how to treat people - when to give a bit, when not to. And as I've told her several times during the past year - this is NOT my first rodeo. They are the about the 6th agency I've had. I know what is kosher and what is not. But I'm used to working with large agencies - they have set fees and fairly general rate increases. What I'm figuring out here is that she charges different rates to different people - based on what she thinks she can get them to pay. SO WRONG!!!
Today I read of a national company that lists agencies for hire in rural areas. They are listed on it. As such - I believe they have to comply to certain standards. I may make a cold call to that company and just ask some questions about the standard of rate increases. I don't want to identify myself because as Summer has pointed out here - I can't jeopardize Ryan's care. She has threatened to pull out 6 times now.
And I guess I'll have to start interviewing other agencies to see what I can come up with.
BUT - your other suggestions (both of you) are right on. And this is what I have been thinking about. Limiting my availability. Some of the problem has been because Ryan has been so sick lately. He is still struggling this week with a serious skin infection. Back to the dr tomorrow. But I'm at the point that I can't/won't answer to her demands anymore.
There are some advantages to having a nanny but also some disadvantages - like having someone around all the time - not so wonderful. But to be able to take him to Florida and have that person to transition him etc - that would be great.
This afternoon I fell asleep on the couch. And I had a really hard time waking up. I think I am just emotionally exhausted.
And yes - I think getting it all in writing is vital because I KNOW that part of it - she is hiding (she could hide a part that is taxable). She put some of it in writing but not all of it. Oh - and Josh thinks we should get in writing that the girls are getting most of the $ as their raise as she told us.
The one other thing about the rate is that she is charging us for transportation - 2 trips a day - yet the government hours are supposed to cover one trip a day. I brought this up at the last case conference (month ago) and she threw a hissy fit. Told me never to bring up money at the case conference and that I had better pay transportation or the girls would all walk. UGH UGH UGH.
OK - concentrating on Josh being here. Better days.
Thanks
Barb
Barb.....Good morning.....as a MI RN that has worked with kids for 19 years and within the Medical system, I really feel for U and the squeeze that parental caregivers get.
Yes... u have your hands full dealing with an agency like this and caring for Ryan, being his advocate all these years and dealing with another countries regulations ( Canada ) right? You make me exhausted just reading your posts ( im 56.7 months old and holding.)
I like the idea of a nanny.....Maybe a live in nanny.....An exchange of board and room with a compensating wage .to take some of this off your shoulders. Mental and physical exhaustion does not make for a happy healthy Mom ( or son )
And I'm sorry to say if this was happening within the United States U know there are so many options for reporting "HER" kind of activites......completely clueless regarding canadian labor laws.
And U did all of this when U were 28 because of the advantage of youth..we all did things (school, 2 jobs, balancing a family etc. ) because we wanted to life a better life.
I have followed your posts......and some times " It JUST ISN'T FAIR " Ryans health was not on your radar or your plans way back when, but I'm proud of you for not giving up......and just placing him a long term facility....like so many parents do.
Sometimes when I start bucking the system ( because it suks )........the ole saying Let go and Let god comes to my mind and I know he just laughs at some of my plans my will my way........
I hope YOU find the solution that will bring U some peace and some much needed rest.
Cindy
OH, And if My divorce would have gone thru in 2008, This is the kind of job I would have looked for as an independent care giver........
I wish i could just come up there and give u some time off..Time for Josh and Barb....time to regroup.....sigh
Not So Sunny,
Thank you!
It so nice to get the input from a nurse like you (and Gineen). It makes me know that I'm not alone in knowing that she is bullying me and financially abusing me. I could write a book about the behaviour of this woman. Last month - just as Ryan was going into hospital - she accidentally Butt Dialled me. I was able to hear her BADMOUTHING me to my son's workers - telling them that I should be paying them more. Just what I needed to hear. Now I know why the workers like her - she gives them just what they want! I don't need them siding with her against me. I also heard her badmouthing my government appointed care coordinator (who is lovely and very supportive). I called her out on this the next day (she appeared at my house when I was still in my pjs) - she denied it - said I heard wrong. I had even heard her speaking to my workers by name!!!
Every person who has attended at my home - re his care, his respite, his therapists, his dietician, his supplies vendor, his pharmacist - have said how pushy and demanding she is. She takes over my role at times but drives everyone nuts.
Although this is the last thing I want to do - I am going to start building some kind of a backup system. Some extra respite. Because I have a feeling things could blow up. I don't plan to talk to her at all about the new "billing" to start June 15. I already told her what I thought of it. Even if I have to accept it for now - I want a new plan forming. Maybe a nanny if I can't get reliable care elsewhere. And although I had stopped doing most of his "on hands" care - I may have to go back to that for a while.
Worse case scenario in my head - if they pull out suddenly - put him in respite for 30 days (the max) while I get a new agency in place.
I think it's time to call in the troops. I will call an agency I spoke to last month and also the agency who subcontracts Ryan's care to her. And the care coordinator again and also the national group she belongs to. I think I need to expose her for what I feel is financial abuse.
I can't take it anymore.
And yes - I wish you could be here to give us a break and help us transition through this. Besides - you'd love it. it is so beautiful and we're right on the lake. I need to get this back to the dream home it was intended to be.
I like that you are also 56. (I am 2 months younger than you - LOL). I'm sure we could be friends.
Barb
You have a plan........I like that U may be 2 months younger than me ( I'm a libra........U know our traits ) the scale always trying to balance everything and making sure everyone is taken care of...grr and Caretakers forget how to take care of ourselves Im finally learning that but i bet i feel 5 yrs younger ( on my good days ) hehe
Yes we love our neighboring country Used to fish up there for years Ottaman lake area
I feel like your friend and have for some time, all of 5 ft of me I just usually post much, but could not resist this time Hugs barb
Cindy
Ohhh finiancial abuse YES emotional abuse Big YES....dont forget that aspect of all this bs
Cindy
You know your worst case..respite might not be that bad ( If its available in your area) Just so U can regroup.rest Sit quietly and determine your next step
A lady ( I'm using that term lightly ) like the one you are describing is gonna come at U like a Tornado once U start pushing her.
Stand your ground Barb......Your the Mom.....U know whats best for Ryan, U , and your family.
And yes i do remember the butt dialing episode.....too bad U didnt have a recorder...hmmm
THIS would not fly in Michigan or Florida.........
hugs
Cindy
NSS: It feels good to have friends and I'm glad you made yourself known.
I have called the Red Cross Supervisor (who subcontracts her) and the CCAC Supervisor. We will hold a case conference without her. The RCS told me that she KNEW this was going to happen - that maybe she buried her head in the sand for a while hoping it would blow over. She said that it was coming to a head - either I was going to fire her or she would pull out on me. She feels I'm being abused.
I also got an email from her (the witch) asking for my decision. (It's been less than 4 days) - that she needs it in order to prepare my contract - she wants to know HOW I wish to be billed. She also contacted my son's day program (which she is in no way affiliated) because they held a meeting with me last week and she was not included (she is infuriated by that). She ARRANGED a meeting with them without my knowledge so that she can be kept up to speed with the program. I am incenced by that. I just called the Program supervisor to let her know I will not agree to it. They can't make arrangements to talk about my son without me.
She also told me she will be calling me later today to discuss son. Oh goody!
Spitting fire today but I need to make this change in order to stay sane
Barb
Cindy:
It won't fly in Canada either. But best I get care in place before I really go after her. This is not going to be pretty.
Barb
Well I avoided the Witch all w/e. I replied to her asking me to clarify how 1 wanted to be billed (how about never) - told her that Josh and I had a very busy w/e and had not had a chance to review it. I would get back to her when we had a chance.
Ryan went into hospital today. He has not recovered from his admission of a month ago. Every day has been a challenge and I have done everything humanly possible to get to the bottom of it. He was in so much discomfort today - his dr and I agreed he needed to go back in. He looked so sad and so uncomfortable.
I had a meltdown this morning. Unusual for me. I cried my heart out. I even missed my Mom. As silly as it sounds - I told Josh I just wanted my Mom to bake me some chocolate chip cookies and serve them to me warm. I wanted the rest of my problems to magically disappear. I wish...
I made it clear to Ryan's worker today that I didn't want to talk to anyone (agency) so she spoke to them. They were helpful.
Josh was a Godsend as always - he stayed much longer (he goes home on Sundays) - drove me to hospital, dried my tears and researched Ry's illnesses on his phone. He also stayed and made me dinner.
My daughter decided to come tonight to visit. SHe will be here for 2 nights. I am happy about this - her boyfriend is coming too but they offered to help me with my beach.
Ryan's immune system is SHOT. He has been on 7 strong antibiotics in the past 5 months. He breaks our on different areas of his body every day. It is heartbreaking.
And that's my update. If they don't keep him in hospital till he is reasonably better this time - I might opt for hospice care for a short time when he is released - long enough to get hime to an easier care lever and long enough to give me time to sort out his care.
And that's my update. Daddy dearest is off in Russia on some kind of cloud without a thought about any of this. He knows "Barb will take care of it".
Barb
1) GOOD probiotics
2) Zinc 40 mg/d, essential for good skin healing
3) Cranberry tablets daily to prevent bacteria from sticking to the skin - works for wounds, not just bladder infections
4) Ask them to test cortisol/ACTH to make sure his adrenals are still working
So sorry honey. (((((HUG)))))
Thanks Ellie!
You always have great suggestions. My daughter (holistic nutrition grad) got me to start him on Probiotics last week. Josh had suggested same. Is there a way to know if one Probiotic is better than another. The dr suggested one and I checked with the Pharmacist before I bought it. Sorry the name escapes me at the moment.
Ryan's dr does not have hospital privileges. (this seems to be more common these days unfortunately). I have not even met his new dr. Was told he would be in at 8 so I'm up early to go in and consult as I never once got to talk to his dr last time except at admission.
Ashley arrived last night with her BF. She has 2 days off and it was a last minute thing. So that will be a bit of a diversion for me. They have offered to haul some of my 5 tons of sand to the new beach. I have moved about 2 tons so far by myself. The beach looks great so far - had to take the past 4 days off, though, as the weather changed abruptly to COLD and RAINY. Today does not look too bad. Much cooler than those record breaking hot, humid days that I chose to be out there digging and hauling. Lost some weight, though - so that's not such a bad thing.
Upside to Ryan being in hospital - no one from the agency is in my house! Sometimes you just need to step aside. However - having him not here is worrying as well and certainly confusing to him which makes me feel sad. I will try to reassure him when I'm at hospital.
Barb
Good morning Barb....Sorry to hear about Ryans admission to the hospital.......but maybe just maybe it was a godsend to give U a little break and time to carry on with your "plan ".
Its never comfortable to have him away and in the hospital when he's ill, and not able to understand why.
Sand....your hauling sand in that heat.....lol......your crazy girl! I have a little john deere with a bucket but it would take me 7 days to get it there. Thats one of our other business's Excavating and a gravel pit, along with our campgrounds....yes were busy little beavers.....Hey if u ever get to sw MI.let me know.if U dont camp we have cabins.I call it our little slice of heaven. ( pioneerpoint.net) I hope i dont get in trouble posting that. sorry moderators Just giving Barb an idea for a great place to catch some peace and quiet.
Glad U didnt have to deal with the witch this weekend and Josh sounds like such a dream guy. U did good there. and as far as lalal land for the X. what can any of us say except psssllllllft. on him.
Hang in there Saying a prayer for Ryan and U.
Cindy
OH and meltdowns are good for the soul...........to release up all the pent up anger and sorrow....So glad you have such and understanding man by your side and Kudos for your daughter being able to help. HUGS
Cindy
Thanks Cindy,
I honestly think Ry had to go into hospital for 2 reasons -
1. it is obvious that his skin condition is out of control. Every day was a new dilemma. I could not take it anymore.
2. I think God saw me struggling with decisions and drama and needed to give me some peace to be able to think clearly.
But as most people know - the hospital is NO BREAK! New dilemmas and decisions began the minute I arrived. Hospital dr says that an acute care hospital bed is not the place for Ryan - first - he can be treated at home (yeah - I've been doing THAT for 28 years!) and second - the longer he will be in hospital - the more chance he will catch something else (yeah I know - he caught MRSA in the hospital).
I met the Charge nurse and she was helpful. She could see my struggling and decision problems (I did not discuss the agency). When I mentioned lack of continuity with drs (my clinic rarely answers the phone - so without being able to make an appt - we sit there for several hours every week and often see a different dr). I had been forced (by the damn agency) to get a dr within 24 hrs one day last year. Again - it was that pressure - either you get a dr within 24 hrs or we won't be your agency. The other problem is that Ryan's dr (I DO like her but she is always rushed) does not have hospital privileges - so we have to take whoever. So - she mentioned some drs who might take us on as patients who have privileges. And without saying it exactly (it is unethical) - kind of insinuated that maybe we don't have a really good dr. OK - well - that is what I need to know - I had been feeling that might be necessary but with no "ins" in our new town - was not sure what my options are. And a decent dr is better than no dr. She agreed to help me.
Ryan was in good spirits yesterday but I could not spend the whole day there as my daughter was visiting. I got him a new cd player and a couple of cds and left early afternoon. Came home and agency called me immediately. She had just stopped in hospital (dodged a bullet there) right after I left. Of course she wanted to get involved with discharge planning and needed my permission. Which is, of course good when she is my agency, not so good when I'm in turmoil over it.
I then spoke to the government supervisor who is always very helpful. She and the other agency who subcontracts my agency have been chatting at my request. They are not so sure there is anyone better out there who would be reliable. They also have a bit of a problem with us meeting to talk about mine. I know they want to help but there can be problems. Still -we are still on for Friday. She believes that Josh and I together need to sit down and talk with the agency head and lay things on the line. Mostly about how much stress she is putting on me and about how much we can and cannot afford.
Then there were a series of calls from the hospital. So much for a peaceful afternoon with my daughter. More on that in a bit...
Barb
wow...........It just doesnt ever stop for U.......Good Luck
Cindy
It takes a strong strong woman to do all of this.not that U have a choice but dang
Thanks Cindy. I appreciate your supportive posts. We have a small lawn tractor with a trailer but our battery is dead and I think we're going to get rid of it. I hired a lawn company to cut the grass this year - they're doing it for a good price and it gives Josh more time for other things.
I have been to Michigan several times. Have some good friends in Grand Rapids.
Barb
So here is my latest dilemma...
Hospital told me yesterday that they don't plan to keep Ryan there long at all. And that maybe we should consider a short hospice stay in a nursing home for him. If he is released there (could be any day now) - they have to take him (my call to the nursing home didn't say that) - one floor is devoted to recovering hospital patients.
This is something new to me. He has always come home. Apparently they could keep him up to 6 or 8 weeks although it is not likely he would stay that long. The home is brand new and lovely - about half an hour from here (everything is half an hour away as we live rural now). I could visit daily (which I would) and they could take care of everything OR I could have my agency send in the girls for as many hours as I chose. (I would have to see how much care and interaction he was getting).
So - this is a big decision for me. It seems like an obvious decision aside from the fact that it is guilt ridden for me. It would also be fairly time consuming for me - going there daily but that's not the biggie. I worry about his happiness, his demeanour. I think I should visit there today as this may happen tomm or the next day. Although my daughter is visiting me until suppertime so between going to the hospital and going there - I get no time with her at all. And I have missed her!
I called the place yesterday to ask questions. The manager is calling me this morning. So we will see. I think that if his discharge is not imminent (as in today or tomorrow) - I might postpone my visit until tomm or I could go there after Ashley leaves around 5 today.
But what this decision WOULD do for me is buy me some time to figure my agency thing out. Time away gives me time to clear my head. Then I can make the decision about the agency and also about a new dr.
And I thought this summer was going to be easier...
Barb
This would be temp. Barb? Could you try it and see how Ryan does there, you know him well, being mama, you could see if its something that would work? Would you be able to let him go on a wait it out and see type basis?
I agree, you will make the right decision for you two. Your smart and loving and thats the two things that are needed.
Hey Gineen,
Yep - I went to visit there tonight and I really like it! I'm actually shocked but it is really really nice. Reminds me of one of my timeshares at Disney - very posh!
They have an RN on staff and she actually knew me - had been to our house for an agency visit (she works for a different agency). She said she would put in a good word for Ryan and that she feels he would do well there. I like her!
There was a super-aweseome deep bathtub with a lift - Ry has a wheel-in shower at home but a tub would be better! He would love it - it has jets and all. There are many activities, they have PSWs on staff too and I could send in my girls for a few hours every day if I choose.
He has to be assessed by the home staff to see if they feel they can handle him but he could be moved soon. I will agree to it.
And my agency is after me once again - asking about how I want to be billed as of June 15! JEEZ - give me some space!
Anyway - a plan is formulating.
Barb
Hi Karen!
Yes - it would be temporary. There is a special, lower rate for him for the first 6 to 8 weeks but it would go up after that. I am thinking we might do it for about a month - or till we really get his skin issues under control.
If Ry did not like it - home is always an option. A similar setup has been suggested for me to consider many times when I am away but I have shied away from it. If this works out during this trial - maybe that would be a good consideration for when Josh and I are on vacation. But only if Ryan likes it.
So - while he is in there - we could negotiate with the agency and choose a new doctor. He would be safe in the meantime.
Now I'm hoping this will work out.
Barb
Well, it's not going to work. Apparently Ryan is "too handicapped" for their home. That is one tough blow to take. I cry just writing it.
So we have no plan. He is still in hospital in isolation. Can't stay in hospital. Can't go into hospice and can't come home. There cannot be much anything more frustrating than this. It is not the life I signed up for.
I'm sorry I wasted my time going there last night. It was about the last thing I had time or energy for.
I am discouraged.
Barb
AWwwwww, honey - I'm sorry.
They will just have to keep him in hospital until an alternative is worked out.
Sorry so much weight is on your shoulders - you're a good mom. The best.
I know they will probably have to keep him in hospital until they find a place but they've been threatening to send him home since day 1. Yet they have not resolved his skin issues/breakdown. His current infections are healing quickly but he is now on antibiotic #8 in 5 months.
The main issue is the skin breakdowns and recurring infections (daily when he is not on antibiotics) and he needs to be turned throughout the night. How a nursing facility cannot handle that is beyond me but he is complicated. G-tube fed (that was an issue) MRSA (another issue) although he has swabbed negative the last 4 swabs.
Ryan was walking 2 years ago - now they don't even work on it.
I am sending his PSWs in to the hospital for a few hours tomm at my expense. I will go in the morning and see what else we can work out.
I'm considering just bringing him home and making it work. Josh says he will help me on the weekends and somehow I guess I'll find the strength - I had been trying to do it for the past month although it is not easy and I worry that I'm not doing it good enough.
Barb
I wonder how much one of the mattresses is - it had been mentioned to me by the agency supervisor.
yes - I bought him a brand new power hospital bed when we moved here last year. Power recliner. Power wheelchair. Ceiling track lift. Brand new fully tiled ceramic bathroom with wheel in shower. Lift over the boat. Lift over the hot tub. Nearly BROKE me but I wanted the best for him.
And his dad knows none of it. He will call in a week or 2 to demand to have him brought to him. And that's it...
Barb
Thanks so much Gineen!
I'm still torn about what to do about the agency. I agreed to let one of the girls go in this afternoon to hospital - I will pay for 4 hours and travel. While he is in hospital I can do research and hopefully try to negotiate my contract. Our government assigned supervisor has suggested a social worker who could help act as a negotiator. I think this could be quite helpful although the woman from Hell supervisor of our agency would definitely not like this.
Not sure what I can do. Both with his placement and with the agency. Every day in the hospital - I know my time is limited. They keep telling me he can't be in an acute care bed.
UGH
Barb
Barb,
I'm just so overwhelmed for you just reading about all you're having to deal with and the limited options seemingly available to you.
Brings back memories of my precious Zachary. I was so worn out towards the end of his life ... and you've dealt with it twice as long as I did.
I was so excited about the nursing home possibility ... is there any chance you could speak to anyone else to intervene? I agree it's hard to believe that they've never dealt with Ryan's issues before??
Might they consider taking Ryan in on a trial-run type of thing? Even for a week? It's possible they would find they could handle him. I don't know if anyone knows someone there who might be your advocate ... but that nursing home sounds perfect.
I do think a mediator is absolutely essential for you! The agency head is a bully and you're too overwhelmed right now to be on your game with her. You need help and a respite from her constant nagging.
You are so blessed to have Josh ... he is a literal godsend...
I don't know much about the pressure relieving air mattress you're investigating ... but from since both the agency and Gabby mentioned it ... I take that as a sign that you should probably find a way to get Ryan one. Expensive or not ... this may be one of the best things you can do for him right now.
I don't know why all this has befallen you suddenly ... but it's reaching a crisis point ... which always means things WILL start improving b/c SOMETHING is going to change.
Please know you're in my thoughts and prayers.
Summer
http://www.spinlife.com/critpath/match.cfm?categoryID=473barb...I m not sure if it will let this post as it is an email address but it is a link to one of the pressure relieving air mattresses on clearance for $95
of course that is the lowest end model
i checked with my special needs moms and they said to get your dr to rx you one and insurance should pay for it (in Canada too)
working with your dr and a social worker, you should be able to get insurance to cover a lot of Ryan's nursing costs as well as equipment costs
Summer and Fig: Taking notes and I really appreciate your input and support.
TOday is going a little better. As you say - something has to give.
The hospital dr wants him out and phoned to ream me a bit. I held my ground and told him I also want him home but not if he's just going to deteriorate and go back in next month. Government supervisor (N) offered to run some interference with agency supervisor (C) - they often have to deal with one another although there's no love lost there. N is ALWAYS my best advocate. We agreed she should not talk about the bill but about the need to sit down with Josh and I to discuss the billing and not add more pressure to me. Apparently it went well.
Ryan is improving rapidly. Always does on antibiotics. He was happy today and had the biggest smiles for me. He was also pleased to see his workers.
So we have a Plan B, although I'm afraid to get too excited because we know Plan A went south fast. (& apparently once rejected - can't go there again). Anyway - there is an 18 bed recovery unit in hospital with a day program, outdoor area, large sunny lounge etc. It is a therapy centre and on top of having time for his skin issues to improve - he could have daily therapy there. This is something that would be a GIFT to him. (Meaning in that he would get therapy). Costwise - app $2,200 month. He would be there between 14 and 90 days. There is a bed available in a 3 bed room (not suitable) but a private room is coming available soon.
Ryan walked up until he was in Intensive Care 18 months ago. He has been getting stronger and was walking in the pool (although there will be no pool for a while). There he would have the extra "learning to walk" equipment and DAILY physic. As well - there's an awesome whirlpool tub that he would love (used to have one in his room in Niagara). That might help him too. The thought of "hospital" extended care did not sit well with me but this is actually a decent option.
And N is arranging for a free one month trial on a special mattress. No point in shelling out the $ if it's not perfect for him. I think that's a great idea.
So some progress is being made. Maybe a CRISIS is necessary to make the changes necessary.
I left Ryan with his "harem" today. 2 of his workers showed up because they missed him. And he had a really nice nurse. And he was one happy guy.
And Josh arrives tonight. And it's always easier when Josh is here.
Barb
HALLELUJAH!!!
This 18 bed recovery unit in hospital plan - with a private room sounds pretty ideal & that Ryan will enjoy it and have the time to restore himself. I love that he'll be getting the physical therapy he so needs to be able to walk again. And the jetted tub sounds wonderful and soothing.
And a free one month trial of the mattress is perfect! If it works ... fabulous ... you'll get it for him. And if not, nothing lost.
The workers sound pretty wonderful ... I love hearing that they miss him.
I am so glad to hear that Josh arrives tonight and that he will be with you when you sit down with the bulldog head of the agency.
Sometimes women like that won't dare pull out an attitude when a man is present ... sad to say ... but she may behave herself. And Josh is IMO the one who can say a lot of what's difficult for you to say.
He can be the one to insist/demand on BOUNDARIES for you. He can say how worn out you are and the HE will NOT allow this to continue and that everyone concerned must come up with a better way to communicate.
Josh can be your stalking horse. Let Josh be the one to say you are only available xyz times unless it's an emergency etc. He can act (as he actually is) like the concerned partner. Who not only has to put Ryan's needs on the table but YOURS also! He can make sure they understand that you count too.
It sounds as if there's a shift happening. And as I wrote before ... sometimes it just does have to reach the breaking point before change happens.
Seems that there's at least some daylight shining on the situation just from this AM. So fingers crossed that it all falls nicely into place.
Keep the faith b/c all of us are on your side and prayers are powerful!
Summer
How much vitamin D are they giving him, btw? Has his level been checked?
I am going to check on that and your other suggestions and take that in tomorrow. So many things were happening and I never seem to have the same doc 2 days in a row
Barb
Summer: Missed your second post today. Thinking on the Bully situation. And thinking some more. I think I'll see if we get some answers at hospital today and go from there. Josh is a great advocate but he has seen her with her ruffled feathers before. He is helping me keep in mind what is best for Ryan and also for the agency. He is a businessman to the core - he is not AS stressed about the billing as me but helps me see clearer what is worth fighting for and what is not.
I just want to think about Ryan. I can handle the "wait list" as long as he is safe in hospital (debatable) but there are 4 possible places he can go - 2 not far for the workers and I and 2 that are more than an hour away. Apparently the wait list feeds into all 4. And the trouble is that Ryan has just been "added" to the wait list. So now - I guess we wait and see. I guess I have to know how many are on the list. And what I deem good might not be what is there for him when the time comes. Ahh... if life were simple...
So far no one has phoned me today. Hallelujah for that. I'm heading to the hospital and hopefully I missed the dr who will want to ream me again. I will read to Ryan until his worker gets there. He really likes his workers and they love him. This is one of the main reasons to keep the same staff and work things out with the Bulldog. Because it is what Ryan would want.
Barb
OK, we're getting through this. Not feeling like we're in a crisis. Taking care of things one step at a time.
1. Ryan's skin has healed dramatically. He was happy when I was at hospital and his PSW stayed with him for a few hours too
2. Supervisor of extended care replied to our plea (letter form) to streamline Ryan only into the rehab centre in the hospital in our town. (BONUS). This means it will be close enough for me to visit and for our PSWs to continue to visit him and even to take him out - now we have to wait and see when he can get in. Drs have to keep him in hospital as we are waiting for a bed
3. Conference call with "the bully" - Josh and I on one end, she and one of her henchmen on her end. She was not into negotiating. We did not make much progress. She did agree to pay the workers to work on Ryan's walking for 15 min per day at no extra charge to me. She would not concede on rate increase, travel cost etc. It would not have been beneficial to Ryan for us to continue to battle. She did put a price freeze on for 3 years.
4. Chuck sent me a text out of the blue asking to see Ryan on Father's Day. Ahem... So I texted back that he was in hospital. There were a few texts back and forth. He just asked to be kept informed of his progress. That's it.
Josh said to me - "Boy - you really do seem to get it from all sides".
Anyway - we went out for dinner then for a long ride in the boat. We stayed out till dark. We can never do that. I always have a curfew - have to be in the house by 8. We're going to stay out when we can - LOL - it will rarely happen.
We will get the mattress before he comes home. Sad to say he might be in hospital all summer - even for his birthday. But if he comes out stronger and more able and it will improve the quality of his life - this time will be well spent - a drop in the bucket of his lifetime.
Barb
I'm glad things are starting to get resolved. Enjoy your late nights while you can! Moms need to recharge their batteries.
Thanks Kml,
I checked Ryan's liquid diet - Jevity. It has Vitamin D - sorry I forget the amount. Remember he is G Tube fed so he is supposed to be getting complete nutrition. He does get outside often as a rule too.
Barb
Barb,
I'm so glad to hear that some things are getting resolved and that Josh is there with you to be your anchor and keep you focused on your ultimate goal ... which is as always is Ryan.
That you've gotten them to agree to place Ryan locally is wonderful and will make a world of difference for all concerned.
And, while it's not all you wanted ... a 3 year price guarantee/freeze is actually terrific and will give you some peace of mind that the rates won't be unknown which just adds ridiculous amounts of unnecessary stress to anyone's life.
As, for Chuck ... what's there to say. There's a special place in hell for people like him. Enjoy your trips and life Chuck ... but karma is a bi†ch.
What he really doesn't get is that while it's obviously a huge challenge - it's also a huge privilege to care for Ryan.
I will just never understand the astounding level of selfishness that these men exhibit. They are clearly very damaged people ... living in delusion and denial of who and what they are.
And while in some ways it will be sad that Ryan may not be home for the summer ... I think the Universe is giving you a much needed respite and some time to be free and have some fun that doesn't end @ 8 PM!
I truly believe that it's a answered prayer for both you and Ryan b/c he needs to restore his health and build back up to walking hopefully and you need the time to restore too.
So don't feel any guilt. Just enjoy your life and continue handling your life with your usual grace and strength.
Onward!
Summer
Summer:
It is a silver lining the way things are turning out. They NEVER let you choose one of the continuing care locations - it is not part of the process. But the discharge planner and government supervisor went to bat for me and although I did not expect special consideration (trust me - it NEVER happens) - it was accepted. There truly are a few angels around and they really gave it their best shot. I'm just pleased that the docs will give me a break for a bit and hold on to Ry while we get the bed situation sorted out.
& I've been doing my homework. I have heard amazing things about this rehab and the therapists who work there. If Ryan is accepted as a recovering patient for his illness - it will cost me about 2G a month. But if they can convince them he is there primarily for physiotherapy - there is no fee. That would make a huge difference.
Now that I've had some time to think about it - I wonder why Niagara did not refer him for intense therapy following his serious bout with pneumonia and stay in ICU 18 months ago. He was sent home with severe breathing problems and I remember sleeping in his room for a month. I was terrified and kept one hand on him all night to be sure he was breathing and had a flashlight and woke every 20 min or so to check him. Unbelievable he came home like that and no one seemed to notice that he was not walking.
I have been thinking about it. They told me he could be taken out of hospital for outings, home visits and even to his day program. So Josh and I figure we can take him out for boat rides which he will love. A bit more complicated than when he is here but still - something good for him.
Interesting - Chuck did not even ask me which hospital he is in. He did not ask how long he might be in. He asked me if it was serious and if I would keep him posted. And that was it. He did not sound as though he would visit. He had asked to see him but expected us to bring him about 90 min away where he has been seeing him at a mall.
Josh cares about Ryan. He worries about him and, like me, often loses sleep over it. He has stayed with him many times at night so I can go to a girl weekend or to Florida. He even took him to hospital on Mother's Day when I was out of town and his IV started leaking. He researches helpful info for him online. And he quit work early today to help me negotiate with the Bully. He always attends case conferences about Ryan with me and obviously cares about him.
Anyway - let's all keep praying that Ryan is accepted into the continuing care bed soon. And that the therapy helps and he grows strong. He is still a young man and he deserves a good life like the rest of us.
Barb
Remember he is G Tube fed so he is supposed to be getting complete nutrition. He does get outside often as a rule too.
AThe big experts in the vitamin D field want to make 2,000 IU/d the new RDA. Jevity appears to have 400 IU - the current (inadequate) standard.
When I have patients with low vit D (common even here in sunny San Diego) it usually takes about 5,000 IU/d for several months to bring them up to optimal levels.
At your latitude, you can't make vitamin D in the winter - the sun is too weak.
Vitamin D deficiency causes muscle weakness. Giving vitamin D to elderly patients in nursing homes reduced falls by 50% in four months. Ask them to check a blood level.
Also - are there any alternatives to the standard tube feedings? Can regular foods ever be blended and put in the tube? It's hard to imagine how one can be truly healthy on a diet where the first few ingredients are corn, corn, soy, and corn.
Kml,
Yes, I read that it was over 400 IU in Jevity 1.5 but did not know what the RDA was. I will definitely mention this to them.
Years ago we used to blend and use this through the tube but it made for much difficulty in running it and also in keeping the tubing clean. I can ask about this, though, too. Sometimes it is easier to make changes when you're in hospital then implement them when you come home.
Barb
I read on a website about using a Vitamix blender to do that - they are very powerful blenders which could reduce most anything to a thin soup. And they mentioned getting one free through some medical needs program that Vitamix had? (Otherwise they cost a few hundred bucks I think).
I just think that improving his nutrition might help his skin problems and his strength.
Blendtex or Blendtech blenders were giving away blenders too when you wrote the company (for tube fed kiddos or people on blenderized diets)
my bad BlendTec...if you write to them and explain the situation and why you need one, they will most likely send you a free one for Ryan
grrrrrrrrr...no being able to edit.......
the seizure moms say it is the best and the kiddos who have been using it have gained healthy weight and are eating better
Wow - that's pretty cool. I will check it out.
Barb
Hi Barb. Heard through the "grapevine" about Ryan. I am so sorry to hear about the problem. So overwhelming really, but you're strong and get through it every time.
I just wondered here, maybe it's a bit off topic. But did you ever think Chuckie just has a personality disorder? I've come to that conclusion with mine. I just don't even worry about him any more when stuff comes up -- so much that I think I figured out in hindsight just makes me less and less concerned about keeping him in the loop about anything and even caring about what he thinks or wants.
Of course, easy for me to say. I don't have a disabled adult child to worry about. But the whole thing became crystal clear for me this past Christmas when my mom passed. Ex just didn't care, didn't say anything--even to the kids, nada. But he raised a ballyhoo when his dad and grandparents passed about what I did or did not do. I realized then it was just about him and what he wanted and his need for attention. So I let it go. His mom came to my mom's funeral though--very sweet and lovely lady. I have a hunch his family knows his problems, even the kids. One of them told me recently, "asking dad to do anything or getting him to call or communicate is like poking the sloth." This is the guy too who, when one of the kids decided to get married, reamed her out very meanly when she called to tell him and then had to act like the proud daddy and get all the attention on him at her wedding.
I really have come to believe my ex is just a self-centered, piggish, attention wh()ring fool. If he can't make it about him, then he won't bother. Can't do anything about it if he doesn't want to be a normal human being.
Hope you're getting some rest and that Ryan is doing better. I always am amazed at how well you do deal with all of this. Keep putting that positive effort on you and your family. Don't give Chuckie another braincell's worth of space in your head.
Hi KB<
I definitely think Chuck has a personality disorder. I was aware of his "problems" early on in our marriage - a ton of stuff. Somehow when you're in it - you can rationalize a lot of it. I was definitely trying to make it work and afraid of our marriage falling apart. But there were many, many things going on. Possible previous affairs (though I never really believed it), more than one suicide attempt, more than one breakdown, several threatening episodes (one which involved police), more than one arrest, a DUI (there should have been several), careless charge, some blackouts, and so much unexplained erratic behaviour. Looking back - I don't know how I did it. I know I "stuffed" a lot of it away and tried to reason it. I also felt I stayed with him for the kids. Big mistake!
Ashley posted something on FB today about looking for a new job so I PMd her and reminded her it wasn't a good thing to do that - her boss might not like it. She told me that he knew and that he supported her getting a job in her field. She's never really had that much respect for him but today she said "Yeah, he's more of a father to me than my MIA Dad".
I told her that I had heard from her dad and he was asking about Ryan but that I found it strange he never even asked what hospital he was in. She said that she just learned he lost his licence again and that something weird was going on. Brandon was going to phone him today. I asked her if he had not been able to drive since he got sick in Feb and she told me NO - that he found out on May 8 that he could not drive but she did not know why.
So - the good news is that he is more than 3 hours away with no licence. But I'm sad for my kids. Sad that I married a dickhead and that he is their father.
Ryan has been in great spirits. I'm sure it must feel 100% better not to have the skin issues he was dealing with. They have started to let him out of his room a bit and I have been paying for his PSWs to go in for 4 hours a day to supplement the time that I'm there.
So this week is starting better than last week. We shall see how it goes.
Barb
Good morning Miss Barb.Iv'e had a crazy crazy busy weekend but do come home to get away from peeps and check in with DB's and my business FB page...lol
Sounds like things are looking up.......glad to see Ryan healthier.....and U getting a "break".
Ashley sounds like a nice level headed young lady, That sees her father for what he is, I was raised by an alcoholic/depression riddled father ( a sweetheart of a man ) that was unavailable alot. Took me years to forgive him for some of his actions....and forgiveness did not come until about 8 years after his suicide. Alanon taught me that forgiveness was for myself not my dad....He was mentally ill.
Ill tell ya what a liberating feeling that was i just felt all the anger,guilt, pity, grief....leave me like a cloud I thinks its called a ' spiritual" awakening. IT took alot of work on my part to "Let GO and Let god..Im not an organized religion type of person but very spiritual I have a higher power whom I call god..and I know he is there If he had not been beside me i probably would not have made, on this earth.
One of my favorite poems is " Footprints in the Sand. I have it on a jewelry box and a mounted plaque at my desk side.
Your kids will be fine..its their feelings and attitudes to sort out themselves Believe me they have been watching...A strong intelligent woman doing her best for her family and loved ones.
Go enjoy the Canada sun while ya gots it lol'
Cindy Lou
Hey CIndy,
Thanks for your lovely, supportive post! Made me smile.
Chuck and I were high school sweethearts although he was 3 years older (definitely less mature). So at 15 - I chose the man I was going to marry. DUMB! His dad attempted suicide shortly after we met. He was the most annoying drunk I'd ever known. Never saw him sober (well, maybe twice) and he was angry all the time. I just could not stand being around him. Yet when ex was leaving me - he went on and on about how much he missed his dad. He knew his dad had done unforgivable things (yes, to me personally too) yet all of a sudden - he wanted the R that I had with my Dad and started crying about it all through our 25th anniversary dinner etc. Screwed up????
I love the poem "Footprints" and have brought it to mind many times when I needed to be reminded. Like you, I do not go to church but I am spiritual and a Christian. I commune with God and nature. I respect the religious views of others unless they "get in my face". The thing is - here where I just moved - there are 3 local churches but it seems that all the people I seem to know - go to the United church. And they LOVE it. And they have invited me and I have declined. However, I've actually considered checking it out since they seem to be such a nice group of people. I DO socialize with them at other community events too, though, since I joined the Lions.
Today is the 7th anniversary of my mother's passing. She died too young - cancer of the esophagus -I've been really missing her. Strangely, last week when it became inevitable that Ryan needed to go into hospital and I was crying - I cried to Josh that I missed my Mom and just needed her to bake me warm chocolate chip cookies. How weird was that? My Mom would be there at the hospital, reading books to Ryan - just as I have been. I was just looking outside and see my peonies in bloom. My Mom grew peonies. I will bring a couple indoors today in honour of her.
And on to the hospital shortly. I have the workers coming in from 1 to 5 so I can be there on my own in the morning and deal with the drs and the bureaucrats. Not expecting too much today but hope for some answers tomorrow.
It will hit near record highs today and sunny. I'm going out on my Seadoo. Swam yesterday and I hope to start reading a book. Maybe get a start on one of our Book Club reads for Fall - "The Woman Who Went To Bed for a year" (Something like that. I like that idea - LOL
Barb
good morning again.... I always love to make people smile... I do have a good sense of humor, its carried me a long ways One of my alanon friends said at a mtg. once " The laughter thru the tears " I took it to mean its OK to cry, but U can't take yourself so seriously that U forget the " good things about life " that has stuck with me probably for life.
I understand U missing your Mom....( mine is alive and kicking arse )...but on Mothers day weekend I had a real hard time, because of my dad that died at the age of 53....by his own hands.......His birthday is always real close to mothers day weekend..........It would have been his 83rd birthday So yes he died 30 years ago....and I was the only girl and the youngest...when I was real little I was def. a daddy's girl...We shared the old song "Yellow rose of Texas" lalalala
every year I put one single yellow rose on his grave and usually bawl like a baby.....but it helps, My dad was real sentimental...he cried at movies like OLD yellar and the sound of music...I take after him...unlike my german mother whom i love very much, ive seen her cry twice in her life the death of her father and the death of mine......anyways...I do know where your coming from
Its hot too here in MI doing a rain dance as its getting really dark and cloudy at 10:45am hmmmm I hate storms all i want is rain
Take care
Cindy Lou
Making some progress at the hospital (I think). I now have the doctor on board (amazing). He supports my efforts to get Ryan some physio to work on standing/walking. Ryan would have no chance at this program unless he is in hospital. So now the push to get him out of the acute care bed has lessened and the push to get him into complex care/therapy is on.
I was assessed and interviewed to death this morning. Some very tough questions. Some things I didn't want to think about. But apparently I made the grade! I had the supervisor and doctor in tears (I have that ability at times). But I only made it to the "consideration" stage and Ryan (as usual) doesn't really fit the hold. However - I have more people on my team now.
Today my sister has taken the day off (Joyce) and she is coming to visit with Ryan (and me) and we will go out for a meal or 2. She is bringing some books for Ryan. It will be nice.
Tommorrow is my intense assessment for Ryan's continuing therapy care.
And dickhead sent another text "can I see Ryan in 2 or 3 weeks?" To which I replied - sure - "but message me then" DUH!
I picked the most gorgeous peonies from my garden yesterday as my Mom loved Peonies. These smell fabulous! They remind me of her. 7 years since she passed.
It's raining and not so hot. It was 33C yesterday (over 90) here - hotter than Toronto!!! It's a relief to see the rain and a bit cooler temps.
On with Garbage Day!
Barb
Spent a fabulous day with my sister yesterday. Yes, fabulous despite the fact we were at the hospital and I had yet another long, gruelling interview there. Sis kept Ryan amused. He has been amazingly happy - loves when we read to him and work on I Spy books.
Today is my most important assessment for his next step. I hope to get some answers about what will happen next. I know he has been approved to stay in our town rather than transfer to another location. He will either go into complex care for a few weeks, therapy for a few weeks or be discharged to home soon. I'm really in limbo but doing my best to jump through every hoop they put up. The fact that Ry is in such a great mood really helps - if he were depressed - I'm not sure I could keep him in hospital.
So please say a prayer for us today. That Ryan will get a chance at intense physic for his standing/walking and that we will get some answers soon to "what comes next".
Thanks
Barb
Good luck today Barb and prayers are headed your way.
So happy to hear you had a good time with your sister!
Thank you!!!!
Ryan ACED the assessment. I'm not sure how but God must have had a hand in it because Ry was very sleepy and I thought (no way). But he totally met the criteria. I was commended for the excellent condition of his muscle tone and his general wellbeing. The physio was amazing!
More in a bit, my daughter is freaking out at work.
Barb
That's AWESOME!!!!
I hope your daughter is doing ok.
THanks Mish,
My daughter, Ashley, got another part time job to supplement her full-time one. The second one is in her field. She asked her boss for an occasional Sunday off for the new job (she was upfront and honest) and he threatened to fire her. She was beside herself. But she went back and talked to him again and all seems ok now. I told her that she showed maturity in how she was handling it and reminded her to always be honest (as she was) but to do what is right for herself. One reason she needed the 2nd job is because her roommate just gave her notice and she needs the extra $. Hard lessons to learn at 23 but I think she is doing great.
And me? I'm over the moon!
Barb
Ok, Ry will be moved into the therapy centre by the end of the week and begin his best chance at recovering his mobility. Fingers crossed. (interesting note - Ryan has had his fingers crossed since he went into hospital - I think I know why!)
He will be there somewhere between 3 weeks and 3 months. Long time. I will, of course, miss him a lot here but will be there almost daily.
That said - the team knew I had a trip to Florida booked next week. I told them I was going to cancel it. They told me NO WAY. THey told me it is their job to ensure that I get adequate respite and that it is a MUST that I go. So I'm really happy. I'm visiting with friends, taking a course and going to the condo for a few days. SO happy!
And on the way home today a big bear ran out in front of my car (well, kind of beside my car). I came within inches of hitting it. SO scared. I was just shaking. On my road this week someone hit a moose and is in critical condition. Not so sure about the moose. Another friend hit a raccoon 2 weeks ago. Doesn't sound like much but there was $2400 damage to the car!
Tonight I am inducted into the executive of our Lions Club. It is a Pot Luck Dinner. I just made a huge Caesar Salad. Significant others (called Service Partners here - weird!) are invited. Josh is working in Toronto today and tomorrow so no way he can come. I hope I'm not the only one going stag.
It feels good to be a part of this community. It is small, but it has heart. Everyone seems to know about Ryan and has been rooting for him. Just going to Pot Luck makes me feel good. It is the kind of life I had been wanting. Not one person here makes me feel uncomfortable.
Oh and just to tell you...
Yesterday the hospital phoned my cel just as I was entering the Parking Lot. They tried to catch me before I left home (20 min away) as they did not have one of Ryan's meds. Couldn't get it. Our pharmacy phoned all over but they were the only ones who had it. I said I'd drive back to get it - but NO> My pharmacy in my little village sent it in a taxi!!! How awesome is that? Our pharmacist is one amazing guy. He is also in my Lions Club. Big thanks to him and his staff!
Anyway - must get dressed and ready to go. It's so quiet around here without Ryan and his harem. (workers). As much as it drives me crazy at times - I kind of miss the company. So it's good I've got people to hang out with tonight. And Josh is back tomorrow.
Barb
HALLELUJAH!!!!!!!!!!!!!!!!!!!!!!!!
I am SO happy for Ryan ... and you too! What a difference a week makes! I felt very strongly that God's hand was in this b/c it reached a crisis point and ONLY God could have make all this fall into place. PTL!
And so much confirmation that all is exactly as it should be ... finally NICE people HELPING you and caring about you ... instead of making your life more difficult.
This sounds like a wonderful plan for Ryan ... so please trust that God is behind this and that it is going to lead to wonderful results.
As I've written before ... I think you need a respite from the bully ... and with Ryan in a fabulous facility ... you will have some well deserved time to yourself and the time to restore mind, body and soul.
Of course you will be visiting Ryan daily ... but the change up will really benefit both of you ... and it's only temporary ... you'll have your precious son back soon enough.
I so strongly believe in the power of prayer ... and you really do have MANY prayer warriors on your side.
And congratulations on your induction into the executive Lion's Club. It says a lot about you that you've already made a place for yourself in a new life and community. I admire your gumption!
Have a wonderful time in Florida ... all is well in Barb-land!
Summer
Thank you Summer,
I agree with everything you wrote. I just cannot believe how such a horrible situation turned around so quickly. I was praying a lot and I know many others were as well. Some special angels were batting for us - some I have met - some I have not.
But it was also a test. A BIG test of strength, faith and endurance. A tough test - because Ryan and I were both getting so tired. Strangely, despite the fact Ryan is in hospital - I have never seen him so happy and alert in months as he has been in the past week. Just the reminder I need.
I slept in this morning. Going to hospital in the afternoon - meeting with Physio and checking out a wonderful new piece of equipment that Ryan will likely be using. I have Ryan's worker with him until I get there so I can have today to get things in order - so many things got shoved aside as I concentrated totally on Ryan.
Last evening as I was making my salad for our Pot Luck I thought about my new life. So happy to go to a dinner with non-criticle people. I felt "judged" somewhat in Niagara. I really don't miss it. I felt weird last night as people were to bring their significant others & Josh could not attend. But guess what? Several of the members also came alone and I never felt weird for one minute.
And last night the incoming president (and my new friend) announced she'd like us to sponsor a local Santa Claus Parade. To which I finally realized my calling in the club. PARADE??? I DO PARADES!!!! Having run a dance school and majorette team for 36 years - I know how to do a parade. So it sounds like I am going to be the Santa Claus Parade ChairPerson. Now I get my time to shine!!!
I'm a happy girl! Last week I had just about reached one of my lowest points in years - this week I'm back on top of the world!
Oh and for those of you who talk about "dates" and "anniversaries" - know this - Yesterday was the 7th anniversary of my Divorce becoming final. I was so busy in all that was going on that I FORGOT!!! And look what June 13th had in store for me!
Happy days are here again!
Barb
Ooooh!!!!! Parade!!!!! So much fun! I can't wait to hear your plans for it.
I'm so happy that things are working out for you and Ryan. His care directly affects your wellbeing so when they mesh....MAGIC!
You're SO right Mish! I am just full of energy and spirit today!
Barb
So glad that everything is turning out well for you and Ryan. I think perhaps his being in the hospital and you away from the irritating care taker boss has something to do with the good vibes. I am sure Ryan can tell that you had been extra stressed and now you aren't stressed as much.
Hope it all works out well for everyone.
kat
Yes Kat,
I'm sure he could sense my stress!
Looking back - I am not sure how I didn't SNAP last week. It was all coming to a head. I have to stay on good terms with "the witch" but I'm not letting her have all the control.
I have made a few people at the hospital aware of WHO is in charge (me) and what "I" feel is appropriate for MY son. I will still have some of his regular workers go into hospital (the witch has suggested many more hours than I have scheduled but I told her "No thanks). She has accepted that and actually been "caring" and helpful. Who knew? But she knows I AM vital to her business and she won at the price increase. Incidentally, I emailed her 2 days ago that the new price which was to start June 15 was increased, according to her, due to his increased level of care. But as Ry was in hospital and the workers were basically going there to "entertain" him and to gain some new physio training - I did not feel it appropriate for me to pay them the new wage. To which she AGREED! She will not charge me the increase until Ry is out of hospital. YEAH - another victory!
So Ryan was moved to the new setting yesterday morning. We were able to participate in a couple of group activities - exercise outside and horseshoes (rubber type with participants sitting in a circle). So nice for Ryan as he has been in isolation. Lots of meetings for me and when I left - his worker was there for the afternoon and then they were having a live band come in last night for a Creedence Clearwater Revival jam. FUN!
Today I'm taking off from hospital. Josh and I are going boating, doing a few "chores" around the house and checking out the new restaurant that opened in town. I'm also feverishly trying to pack for Florida. Florida is where I will find myself again. It is what I NEED!
Oh, and I haven't even bothered to inform my ex. He has not texted again so I will wait until he does. If he doesn't share the pain - why should he share the glory?
At any rate - there is JOY in my world once more! My daughter started a 2nd job - this time in her field (Nutrition) and she is doing great! My other son started a new job last month and finds a huge increase on his paystub. He has also finally started texting me regularly (learned he had been texting the wrong number for a year - I was wondering what was up with him!).
And Josh is still Josh. Even tempered, easy going, a true partner in all of this - OUR LIFE!
Barb
This week is going great! Josh and I spent time with Ryan at the hospital on Sunday. Ry was responsive and seemed pretty happy. On Monday I was able to participate in his physiotherapy. They used a Sit to Stand> Once up, Ryan stood on his own and would NOT sit down. They took away an assist, then another then a 3rd - he just kept standing. They are probably going to use a different assist after this - he has outgrown the Sit to Stand.
I've been after my nursing care agency to work on standing/walking for the past 13 months and I got every reason in the book why it wouldn't work. And they wouldn't do it. I'm glad Ryan is out of her clutches. And she is SO over the moon that he is doing so well.
I had a short trip to Florida planned. Was going to cancel. Hospital staff insisted I should go. Ryan's workers will go daily to be with him and the hospital staff are wonderful - taking him outside, involving him in group activities etc. So I threw some things in a suitcase and woke up here in Disney World. So excited. I will be taking some classes and meeting up with friends. And SHOPPING!!!
What a difference a change of scenery and people can make - for both myself AND Ryan.
Ex texted on Monday, asking how Ryan was. I told him the therapy was going well. He did not ask if he was still in hospital or even which hospital. That's a good indicator he has no intention of going to see him. The hospital staff asked me about him - if he called for info etc. I told them he could ask me - I am always honest about what is going on. But I let them know he is not very involved.
My other 2 kids did not see their dad for Father's Day. Ashley thanked me for being both Mom and Dad to her. I stopped in Niagara yesterday and took my own Dad out for lunch - which was nice. I chose to fly from Buffalo rather than Toronto so I could do that (and also because I have free Southwest flights - LOL)
So I'm going to recharge. Not let the Ryan stuff drain me completely. I believe he is in therapy for another month or so but these things change on a dime. The hospital's goal is to have him out by his birthday (4 weeks from today). If he is making progress and happy - I'm not going to rush him though. I want him to have every opportunity to learn as much as he can and improve physically. If he is still in - I will arrange to have him out for the day on his birthday (there is actually a Fun Day planned including a parade). And I think I will start bringing him home at least once a week so he can go boating, feed the ducks, hang out at the beach etc. That will make it all easier on us.
OK, promised myself NOT to stay on the computer while on holiday. So I'm OFF!
Barb
This sounds like exactly what Ryan needed to get his strength back. So happy for both of you!
Have a blast in FL!
Barb,
Thanks for the update. It all sounds wonderful. Ryan sounds like he's thriving & congrats on your victories with the bully! You & Ryan definitely have a guardian angel watching over you lately! Have fun in Florida!
Summer
Thanks Mish! I'm already feeling so much better. I believe Ryan will do just great!
Barb
Yes Summer,
I really do feel that someone was watching out for me. I also know that a lot of people were praying - I sure was!
Barb
Josh's parents invited us to celebrate their 50th anniversary next month in Quebec. It is on a Monday so Josh and I booked flights (I paid for my own) from Sunday to Wednesday (he wanted to leave Tuesday but I asked to stay the extra day as I had never visited there and wanted to sightsee). His parents home is not big enough for all so his 2 sisters and their spouses and kids, along with us are renting a house. They will stay there all week.
SO...
Yesterday I received an email from his dad (to each of us). I had never received an email from him before. He says that their caterer cannot do the meal on the Monday so they're celebrating on Friday. So sorry that Josh and Barb will have left by then and miss out. (WTF????)
I asked Josh about it last night (containing my upset) and he said he would talk to his dad.
Tonight I got another email from his dad - with a detailed menu of the catered meal that we are going to miss. Then his sister replied all about how wonderful it sounded.
I replied all with "I understood we were celebrating the anniversary on Monday. Josh and I are flying out to attend from Sunday to Wednesday. It sounds delicious but I'm a bit confused".
Well, I'm more than confused. I'm outright MIFFED! I will be spending a couple hundred dollars a day to be there with the flight, car rental and house rental and we are being excluded from the anniversary dinner???
Last summer and the previous, his parents and siblings visited us at our home and we treated them like Royalty. One sister and family actually visited twice in the same month.
At Christmas I bought every single person a gift. I did not receive a single acknowledgment or a gift. In fact - his dad phoned me to tell me that he had mailed a gift for Josh - but could I wrap it and put it under the tree? And then a couple of days after Christmas he called to tell me the gift I bought Josh's Mom didn't work very well.
I LOVE Josh. But I'm not so sure about his family any more. And frankly - this just [censored].
Just venting. Thanks for listening.
Barb
Barb - would you go to the hardware store to buy oranges?
You are expecting his family to behave the way YOU would. But clearly, they are....well.....broken.
This probably explains why Josh loves you (what a welcome relief from his family!).
But remember, it never ever pays to come between him and his family.
So don't say ANYTHING negative, treat them as casual acquaintances (NO expectations), let Josh deal with it however he wants (he could pay to change your tickets if he really wanted to - but he probably is just as happy not to be at the dinner). Be polite, but drop any expectations you might have had of them becoming warm loving extended family. Anything you get beyond that is just gravy.
Excellent post kml....as usual
Barb your situation with Ryan has taken such a turn around, don't let this blip through U off.....
Thinking of U
Cindy Lou
Well I'm out of here I have 8 campers to register from last night. Went to the funeral of a very good friend and high school classmates father.
Saw so many kids that have grown - up This couple ( she died 5 years ago ) had 55 years of marriage nine yes nine kids and cant count the grands and the greats
It felt good to see how a functioning healthy family behaves in the time of grief
OK old washing machine quit fridge is on its last leg and getting appliances for a new cabin ( ours ) at the camp
Sears..is gonna love me hehe
Have a safe and fun weekend everyone
Cindy Lou
Ellie: I agree. I was P Od at Christmas but knew if also bothered Josh so I let it go. Smiled and nodded. We had the best Christmas ever with the whole Fam Damily in matching pjs (all 19 of us) and Josh stayed with us for the first time ever. His twin sister told him the book she ordered him never arrived for his gift. Ummm - he still never got it and she pulled that a couple of years ago too. And, by the way - she does quite well financially (lawyer)
I just can't imagine inviting (and letting each of us know that it was expected) people then changing the date because you are such a snob that you want a certain caterer and nothing else will do.
Knowing Josh, he will probably foot the bill for an lovely dinner on the Monday but you can be SURE that I do not want to go. Of course I will. And I'll put on my "Barbie" face. But seriously - there is a good chance Ryan will be just getting out of the hospital a couple of days before (they're talking about releasing him for his birthday on the 18th) and I sure won't be wanting to leave.
My parents' 50th was 9 months before ex left. For probably less $ than that caterer will cost - my 3 siblings and I pooled our resources and threw a party for our parents at our church hall with hors doevers, cake and coffee. We gave them a couple of very personalized gifts - a photo quilt of memories and scrapbook of similar. We had letters from government, telegrams etc and Ashley (then 12) wrote a lovely poem and read to them. This was followed by an exquisite "family only" dinner out. It was lovely.
I guess I had higher hopes for his family. Expectations were out of whack again.
I regret responding to the email at all. I stewed about it all night. UGH!
I'm going to let Josh figure it out.
Barb
Hey Cindy,
That's what I was thinking. I'm recovering from another nightmare. I'm having so much fun with friends. I can't believe he is emailing me this crap. I don't want anyone raining on my parade!
Oh well - today I'm attending "FUN DAY" and we are making miniature chocolate shops. Hard to understand if you don't do minis but I am so excited! Yesterday I made a lovely Christmas room with all gold trim and a golden tree.
Had dinner with 12 friends from all parts of Florida and one was celebrating a birthday. It was HER birthday yet she insisted on buying each of us a drink and brought a lovely red velvet cake. It was wonderful. And of course - totally unexpected.
This "expectations" thing really makes sense.
Enjoy your busy day!
I talked to Josh last night and he had phoned his dad (and emailed me a brief note earlier in the day). Turns out his dad was talking about the meal for the big day when we would be there but had not been clear in his email. They're having a big meal on more than one day. Josh was all calm and wonderful as always. I just can't say what a great influence he is in my life. For years I lived with drama and chaos.
So it is sunny and wonderful at home but I'm driving into the storm today - my first hurricane (maybe). Also - there was a tornado just south of the condo yesterday.
I'm going to beat a hasty exit and get on the road as the rain is really bad. It's been going on for a while already. I'll take my time and be safe. I have plenty of crafts to work on during this long, rainy week.
And I'm meeting up with at least one of my DB pals tommorrow (possibly 3). We get together at least once a year. Friends from my "depths of despair" days. We've known each other over 10 years now. It feels so good to have so many friends here in Florida. I just feel so blessed.
I'm excited to get back to the condo.
Barb
Glad to hear it was a misunderstanding. Boy, people need to watch what they say in an email, it can get totally out of whack! LOL
Be careful Barb! Tropical storms are brutal. We even get them up this far when there is a super strong one in the gulf.
Thanks Mish! I tried to reply a couple of days ago but I couldn't sign on???
Anyway - I drove through very heavy rain and my radio was interrupted several times with Emergency Broadcast warning me to "Get out of the path of the tornado!!!"
We've had 10 tornado touchdowns, high winds, torrential rain and flooding. Not the best time to visit Florida but I've kept myself busy with shopping and my crafts (which I love).
So Josh's dad just emailed me again. He wants to know if we should have the salad before entree or after (French style). Also what salad dressing to use??? It is all being handled by someone named Mml Lyne. Oh well - I'll leave it to Josh to reply. I'm afraid of putting my foot in my mouth - ruby slipper and all!
Interesting - I never told Chuck that I was away. He last emailed me 8 days ago asking how Ryan was. Gee - really sounds like he cares about him, no???
Ryan is doing well. Getting stronger and they just LOVE him. (I knew they would - who wouldn't? LOL)
Got a bit of work done here - had plumbers in to put in easy on/off water shutoff switches. I was unable to do it by myself but got that sorted out now. And tommorrow I'm finally getting drapes in the living room. I had bought some in the Fall but had some concerns and decided to find suitable blinds (which became nearly impossible). So I've ended up back with the original drapes and a new heavy duty curtain rod.
And that's what is new in my world.
Barb
Sounds busy busy busy!
That storm has wreaked all kinds of havoc down there. I can't believe I-10 is closed for such a long stretch! CRAZY!
Glad to hear Ryan is doing so well. You're right, who wouldn't love him?
Chuck is just, well, I can't say here out of fear of being kicked off the board.
I've never understood French style salad service. To me, it's just wrong to have salad after the entree but, then again, I'm American and we're just weird in general. LOL
You couldn't find blinds? In FL? Strange! Was it a sizing problem or a selection problem? Drapes are just so heavy for FL.
Hey Mish,
I have a 14' patio door (actually 3 sections) which are 95" tall. So it makes for less options - most blinds would be custom. And the other problem was that there was only enough room on one side to draw the blinds to. Then when I bought 95" long drapes in the fall, and a 12 curtain rod (longest I could find) - they were so heavy that they bowed. I actually bought the same drapes twice and returned them twice.
Well, I went and found a heavy duty curtain rod with a middle extension to bring it up to 14'. I went back and rebought the drapes for a 3rd time. Well, even the "heavy duty" curtain rod (cost me over $100) bowed. So I convinced my handyman to go get me a plumber's pipe. He had to get 2 ($4 each) and joining piece. We put it up with 3 fancy hooks and kept the fancy finials I had bought. They didn't fit in the ends though. Then I came up with the brilliant idea of gluing a cork in the end of the finial and fitting it into the rod so it was removable. We tried and it worked great but I only had one. So I was FORCED to buy another bottle of wine and drink it! Sheesh - what I go through for my windows.
So now I have lovely privacy drapes with attractive finials on the curtain rod and I can return my $100 curtain rod!
Ok - enough about the curtain rods. Hey - does anyone remember the curtain rod story????
Woman is forced to move due to her husband leaving her for OW. And he has decided to buy her out and move his OW into HER house! On moving day, she sadly looks around. Everything had been moved out but she has left the curtain rods. She decides to leave something else. Something to discreetly "get back" at OW and her ex. So she stuffs frozen shrimp into the curtain rods (good thing for those finials - to hold it in place) Ex & OW will be moving in later in the day. All will be good today, tommorrow and maybe the next day. But then - things will start to seem off, to smell and then they will get downright rank. Eventually OW can't take it anymore and she and ex are forced to move. They could not take the smell and never knew where it came from.
Hmmm... I sort of remember doing something along this line with my ex and OW. Anyone remember???
Ex texted me tonight. Asked how Ry was and if he could see him next week. So I told him I'd ask the hospital for a day pass or he could consider going to the hospital. No reply yet. Undoubtedly - he has to ask "her". LOL. I don't ever have to "ask" about seeing one of my kids. How pathetic...
And yeah - I think salad should go before the meal too. Josh's dad likes it after. So I figure - who cares? It is HIS anniversary and the meal should be what THEY want. Josh says he is just excited about it but GEEZ - we're family! My family wouldn't care if we were just having burgers!
Anyway - thank God that storm has passed. It was supposed to rain through till Friday and that's when I'm flying home. I actually got some sun and swimming in today and plan to head to Sanibel and the beach tommorrow!
Life is grand!
Barb
If I remember the joke correctly, they took the stinky current rods with them! Lol. Did your ex ever figure out what you did?
So glad things are going well for you and that you are safe in Florida. You needed a break from the chaos. Have fun the next couple of days and a safe trip home.
Hugs, kat
Thanks Kat,
Yes - I remember that - they DID take the curtain rods with them. She was SO greedy! LOL!
nope - my ex NEVER EVER mentioned a thing. But my daughter did. She kept mentioning how bad it smelled in dad's car. Hmmm... I forgot that she would have to sit in there. Boo hoo...
This has been a good break. I know I get away often. But I also know why. When things are good - they're good. But when the going gets tough - it gets REALLY tough.
I'm so happy to go sunning, swimming and shelling tommorrow.
Barb
Progress...
Chuck still wants to see Ryan next week. I asked him if he wanted to see him at the Mall (about 2 hours drive for him) if I could get Ry out of hospital on a day pass. I'd have to have the nurse go to my house, get Ryan's van then get Ryan then drive 90 min and do the reverse later in day. Or if he wanted to come to hospital (3 hour drive for him - probably more on a Saturday in July). He texted back that it would be better for Ryan to for him to come to hospital. (It would also save me $300 in attendant fees & gas) so Good For Him!!!! I asked him to phone me next Friday and I'd give him directions/info. I'd like to ask him to leave the maggot at home but I guess I won't.
Anyway - had a great last day in Florida yesterday. Great shelling and swimming. A dolphin came up alongside me. At first I saw the fin and panicked. But he just wanted to leap and play. SO cute!
I fly home today. Must get the condo cleaned, do my packing and be ready. UGH - I always hate this part.
I land in Buffalo and go to dinner with one of my besties. Then on to my other besties to stay 2 nights as we are both attending a wedding tommorrow for another bestie's daughter. And Josh will drive down tommorrow. Can't wait to see him. Drive up north on Sunday and finally get to see Ryan again. He's been doing well - so that's good.
On with the day!
Barb
OK, honestly - can you instantly give each of your children's birth dates and know how old they are? Ummm... I would say that most parents can.
Just got back from the hospital. Ex had visited Ryan there on Saturday for his birthday. Left a gift and card. Written in the card "Happy 34th Birthday Ryan". Ummm... Ryan is turning 33 next week. SO - it's not like he was asked and he had to think about it for a minute and accidentally gave the wrong answer. No - he thought about it and wrote it in the card. DUMB ASS! Ryan is his firstborn!!!
Anyway - he was to phone me on Friday to get details of where Ryan is (he had never thought to ask). But he didn't. He texted instead to avoid direct contact I guess. So that meant a barrage of curt texts. In a way - I was just as glad not to have to talk to him.
But anyway - at least he did go to see him and he bought him some useful things. So that's nice.
Barb
FURIOUS!!!
I just got home from the hospital. Found out that not only did Ex bring maggot to hospital but also her son's girlfriend's child (son and baby mama split when child was born). Ummm - what part of Ryan has a superbug and a severely compromised immune system didn't you get???? I told ex he needed to gown and glove to visit Ry. Why the hell would he bring a kid in there?
I am flipping. It was dangerous to Ryan and also to the kid.
Totally irresponsible as always.
IDIOT!
Barb
FURIOUS!!!
I just got home from the hospital. Found out that not only did Ex bring maggot to hospital but also her son's girlfriend's child (son and baby mama split when child was born). Ummm - what part of Ryan has a superbug and a severely compromised immune system didn't you get???? I told ex he needed to gown and glove to visit Ry. Why the hell would he bring a kid in there?
I am flipping. It was dangerous to Ryan and also to the kid.
Totally irresponsible as always.
IDIOT!
Barb
Why would the hospital ALLOW a child in the room??? (Of course, then they couldn't allow your ex in either lol cuz he's a child too)
Maybe Maggot will get MRSA though - one could always hope.
LOVE IT!!!
I was more worried about the kid.
Barb
I was wondering why the hospital let him in too. Breakdown somewhere for sure.
Hope Ryan is ok. kat
I can't believe how irresponsible he is. I KNOW maggot probably pushed for it. I honestly think because they both screwed over their own kids - they're pretending this kid is "theirs". Ashley says he has brought the kid into her store too. I know it is not the kid's fault but Ash doesn't want a R with this kid. She does not have ANY R with maggot. Very little with her dad.
Still debating whether to text him about this or not. I just feel like they keep pushing, pushing,pushing and I HATE that!
Barb
Yes Gineen,
You are wise beyond your years. And I think you're totally right. I had been told I didn't even have to have EX on the list because - yes - I am POA, custodial parent etc. And that was his birthday visit. Likely we won't see him till the Fall. and I CAN control the visit.
He IS a bit (or a lot) crazy. And SHE controls the entire R. If she says the kid comes - the kid comes. Because he does whatever she tells him and has from the day she met him. He is afraid to lose her - because then he has no one.
So I'm cutting myself some slack tonight - letting it go. But the hospital will get my list of approved visitors tomorrow.
Ashley's had a rough week. Thinking of splitting with her BF. Yesterday she got into it with me. She messaged me that her 2nd job (nutrition store) is offering her full-time but she will keep the pet store job part-time too. And just as I was sending congrats - the hospital called me not once but twice so my reply was delayed and she freaked - thinking I wasn't happy for her. I got really reamed.
Sometimes its just tough to be Mom.
But the physio told me today that I'm the best Mom ever. And Ash told me I'm a super mom. And my new friend came over briefly after we did a charity bingo tonight and told me I'm great. (not sure why she said that). Boy - those things really helped because sometimes I feel like I'm not cutting it. Ryan has not even looked at me in my last 3 visits. That bums me out.
Barb
Barb
I am still just INCENSED that he brought maggot and the kid to visit Ryan in hospital. Ryan does not even know them. He is immunocompromised. He has been on 8 antibiotics in 5 months and has pretty much no defences. I had told him he would need to gown to visit. I have a feeling that they were lax and the w/e and didn't make him do it so he just allowed maggot and the kid in. I am SO not ok with this.
But how do I make myself clear to him when he takes everything I say as a threat and retaliates. maggot knows no limits. My workers have told me that he has brought her along on visits and she has got in so close to him - touching him, her face practically in his belly when they are tube feeding him so she can "see".
My workers have also told me that she has hugged them. They have told me that they are extremely uncomfortable with this. When my ex's affair started - people who knew her told me that her behaviour was extreme and she knew no limits. She also would push harder if rules were put in place (co workers mentioned this).
So - what to do. I can't email him - he won't give me his email. Phoning usually ends in a shouting match. I can text - but hard to get my point across. Do I write a letter? Outline what is acceptable? Will this make it better or worse? Or do I just let the hospital control the hospital and my workers control his visits? Or do I only allow him visits at my house - alone. (he does not know where I live).
What to do. What to do.
Barb
Barb,
When you aren't sure what to do, do nothing at this time. I would go w/what the hospital mandates and speak to your workers. If he wants to visit again, that is when I would advise him that only immediate family members are allowed in to see him and that they must be gowned do to his being immunocompromised.
I realize it is very difficult dealing w/him, but I think the best way to handle this particular incident is to sit quietly and work w/your workers behind the scene. You don't know if he truly is nuts or if this was done to push your buttons, but whatever the reason, you will have your say the next time around, i.e., immediate family only.
I hope that Ryan is doing better that he'll be home soon.
Hi Snodderly,
I think you're right. It is SO hard to sit on your hands and not fire off a letter when your child is endangered. And Ryan is SO special and we have been through SO much. I am almost certain that he chooses NOT to bring her in to the hospital (or the kid) but maggot pushes and pushes until she gets it HER way. She has a long history of doing this - making other people uncomfortable and also to push my buttons.
I have an excellent rapport with the head nurse so I will sit down and talk to her about this. I will make a list of visitors for her - it is a really short list but it is people who know and care about Ryan (immediate family & his workers). I had already talked about what I was comfortable with during his visit - like not taking him outside (I do NOT trust him). But on the w/e - things were fairly lax. That is NOT ok with me.
But the only way to not allow this to escalate, in my opinion, is to NOT confront him. I know he won't be back soon as it is a 3 hour drive. But since it is summer and I live in the lake district - he will probably come back before summer's end.
My workers were told how to handle it after the first time she came along and got too up close and personal. I told them to guard Ryan. I put NOTHING past maggot. That she could not get close when they are doing personal care (such as flushing out his tummy tube). And to speak up when she starts touching him. That Ryan does not like that (he doesn't).
It amazes me that people would go this far and not consider Ryan's rights. A few years ago when Ashley saw her dad take Ryan on an outing then pick maggot up at the store at the end of our street - she called him out on it. Told him she was NOT ok with it. That Ryan can't speak for himself but that she and Brandon don't want to be around maggot and they don't want that for Ryan either. My lawyer told me that was the best way to handle it - let them tell their dad, not me. I don't think he wants to alienate them further.
Thanks for your input.
Barb
My son, Brandon (30) is visiting for the w/e. He lives in Toronto (app 2.5 hrs away) so I don't see him as much as I like, especially since he sold his car last year. We've had a great time so far - boating, great meals and just chilling. It was a last minute visit - I suggested he come on the bus and it worked out well. Josh will drive him home later today.
He told me something last night that was bothering him. Said his dad had called him 2 weeks ago and asked him how Ryan was doing. He told him he wasn't sure. His dad replied "What do you mean you don't know - you're his brother"...
He told me he wanted to reply "Why don't YOU know? YOU'RE HIS FATHER!!!". But he didn't. He is very angry that his father is so uninvolved in all of their lives.
And 11 years ago my ex told me "Don't worry Barb. The kids will bounce back". There has been no bouncing!
Barb
Aw - glad you're having a nice visit.
Thank god your kids have you to count on.
Thanks Ellie,
Brandon made him a card - it was really funny. And Ryan had several cards that friends had sent. We were reading them. And Brandon read the "Happy 34th" from his Dad. Ummm - he just looked at me and said "Yep, that's Dad. He has no idea how old I am either..."
Barb
It has been a Cold Day in Hell. My ex messaged me that he would like me to phone him at home as he needed to talk to me. What? He sounded awful - stressed. Or drinking. Who knows? I was EXTREMELY stressed. Our communication has been very volatile in the past.
But I called. He was very upset about Ryan and wanted to know details about why he was in therapy and to let me know he didn't think the hospital was doing a good job with him.
I was able to tell him how inappropriate bringing a child in to see Ryan was. How it endangered both the child and Ryan. I explained MRSA in detail and immunocompromised systems. He said he had not known. I told him that I had asked him to call me so I could outline it and review the visitation policies but he had not phoned me so I had tried to explain it by text but that didn't make it very clear.
He repeated things back to me a couple of times. Even getting MRSA wrong (although I have spelled it out to him before). He wanted to know why I had not called to let him know Ryan was in hospital - I reminded him that he had been in Russia and that I did not have a contact number or any idea when he was returning. And he understood. I told him it would be easier to communicate by email. He did not volunteer his email address. So I let it go.
He asked me why he needed to be in hospital. I explained what we had been going through for months. He said he had no idea. I told him he had not had intense physio since he was in a coma. He said "You never told me he was in a coma". I said "You were there - 18 months ago". And he said "Oh yeah". Like he didn't even remember at first.
He asked if he could be in a different hospital. He totally doesn't get that he is in a therapy program that he is lucky to be in. I tried to tell him about that.
The good news is that I got my point across about limiting visitors/germs etc. He was not nasty. Nor was I. He wants to see him again next week. I will be SURE to have that allowable visitors list and ensure it will be enforced.
So - in a way it was good. But listening to him - I really am more convinced that he is really losing it or drinking. Sad but true.
Barb
I think I saw a pig flying by too
Mish - It was the weirdest thing. I wanted so much to REAM him for his irresponsible behaviour last w/e, his not knowing his son's AGE and for belittling his son for not knowing about his brother's condition. Yet he calls ME to tell me he doesn't think the hospital is doing a good job. Typical.
He DID make a point of asking me if Brandon went in to visit his brother today. He did. But even if he didn't - could I have made him go?
Oh well - let's hope next week goes better.
Barb
He's just displacing all his guilt and angst onto others - the hospital, Brandon, you.....don't let him.
And yes, he's probably drinking, or losing it, or both. Aren't you glad YOU don't have to take care of him when he develops dementia?
Yes, KML,
He is definitely misplacing his guilt on others. But it was a good chance for me to tell him about how difficult managing Ryan has been. He does not seem to comprehend that Ryan can't walk. Never knew we used lifts at home or had done a huge reno to accommodate him. He is miffed that he isn't swimming every day. Ahem - due to the divorce - I moved OUT of the house that was built for Ryan's needs - the one with the indoor pool. The community pool won't allow him to swim when he has MRSA.
He didn't get it on so many levels. He even tried to tell me about his bout of Epstein Barr Syndrome as if he had never told me before - yet we had texted about it in Feb.
I've always felt that his mind was going and that he continued to drink but just listening to him made me more sure of it than ever.
Suffice to say - he is someone else's problem.
Barb
Well, after more than 2 months in hospital - Ryan is coming home tomorrow. I am VERY happy about this. They first approached me about discharge more than 3 weeks ago. We needed a safe plan for his return home - no way we wanted to deal with more problems with skin breakdowns. So we have opted for the special mattress that will basically turn him throughout the night. The government program will rent it for the first month (trial period) then I will buy it - it will be nearly $10,000 with tax. YIKES!!!
Discharge planning was very stressful for me. One minute I was supermom, the next they were suggesting I see a shrink. One minute they agreed there was no better place than home for him, the next they were suggesting placing him in a nursing home. It was so up and down. It was emotional and draining. I spent a bit less time at the hospital (partially due to that, partially due to a bad cold). And Ryan has been grumpy. He seems upset with me for not being there as much and for him being in hospital. So it's been challenging at best.
But I think I've worked through most of the issues. I know that the agency will still drive me crazy but I think I can get past that. I know in my head what the big picture is and I know what is best for Ryan. And home is that place. And I am very excited.
His hospital room was one mass of cards. He received over 100 cards for his birthday - it was SO touching. Some from all over North America. Some people even had their kids make cards for him. It did my heart good too.
His dad has texted me once a week asking if he's been released yet. Not how he is doing or how I"m doing - just if he is at home. I just answered the question.
So - wish us good luck and ongoing good health for Ryan.
Thanks for listening.
Barb
Good luck! It's wonderful that he is coming home but I know what a relief a hospital stay can actually be for a caregiver.
You are such a pro though, you'll be just wonderful! It will be so nice to see his face everyday.
Barb,
CONGRATULATIONS!!!!!!
I'm so happy to hear that Ryan is coming home. And what a PITA for you to have to deal with others BS about your mental health and what's best for Ryan ... they should be HALF as stable and competent as you are! Doubt many of them would have handled a lifetime of the challenges of a handicapped child -- now man -- with such grace and mental fortitude.
I'm so glad that the govt will pay for the one months mattress rental so you can be sure it's worth such a huge investment. Obviously IF it does make Ryan's quality of life better it's worth it at any price.
Stay strong with that nursing head bully. You're all rested up again and more than a match for her. My money is always on YOU!
Summer xo
Thanks.
He was smiling today when I got there. His entire bed was filled with huge bags to bring home.
We stayed long enough to participate in the Hospital Olympics Award Ceremony. All the patients in his wing had their own version of wheelchair olympics. And Ryan got a bronze medal for bowling! How cool is that. Then we all toasted each other with punch. It was festive and fun. Not the doom & gloom of goodbyes.
I visited the Cupcake shoppe first and took in cupcakes and a big thank you card for everyone. I took the time to thank a few of the other patients too. One lady has alzheimers - she used to be a teacher. But she took the time to read to him when I was not there & sometimes when I arrived she was chastising him for "not listening to me". LOL - she thought he was her student. And he didn't understand her chastising him (nor did he care) - he just enjoyed her reading to him and reminding him to sit up straight.
Yes - I hate to admit it but the physio unit in that hospital was good for Ryan. He got jacuzzi tub baths (we don't have one here although we do have a hot tub with a lift that he can use). They had church, bingo, games, pet therapy, singsongs and even a guitarist who did Creedence Clearwater Revival night. So - in my mind - I pretended he was at Camp. But now he's home and his most gentle worker is with him and once the mattress is here - he can go for a walk to the park.
And the hospital discharge planner who had given me a hard time came to me today and said that after 3 meetings, several discussions and some serious thought - she realizes she was totally wrong about me. That I am a FANTASTIC mom and that Ryan is really lucky to have me. She also told me she's already had run-ins with THAT WOMAN and not to take any crap from her - that she is difficult with everyone but that I can stand up to her.
So needless to say - it all ended well.
And on another note - we're finally decluttering from our move. Had a successful Garage Sale in May. Now we finally put up some things on Kijiji - sold a washer, 2 dryers and now someone wants 3 wing chairs. So I still have a couple of loveseats, another recliner, a coffee table and some lamps - but this is HUGE> It has all been stored in the 3rd bay of our garage which for some reason is carpeted - previous owner had a sort of shop in there. Anyway - Josh came up with the brilliant idea of moving the stuff out and making it into a sort of gym for Ryan. His room is not huge in this house and there is lots of necessary stuff in there so working on walking isn't easy. However - the garage is big. Might not be so great in winter (although we can add a heater) but for now - it is perfect.
Life goes on
Barb
So pleased to hear your news Barb. I think you must be the strongest person I know.
Life does go on indeed and we have both been blessed with new beginnings and that is such a help when we face difficult times.
Hope Ryan continues to make good progress.
Well done Josh for the garage gym idea.
Take care.
Thanks Naej,
Far better to make a plan for something useful for Ryan than to drone on and one about how the hospital isn't doing its job and Ryan should be home and no one ever does enough yada yada yada (Josh as opposed to Chuck).
Barb
We got the new air filled mattress today on trial. Of course the one they brought started alarming in the truck so I got the backup mattress. (just the kind of day I had). But they're bringing the other one tomorrow.
So let's hope it all continues to go well and most of all - his skin stays clear.
I like Bingo and Jacuzzis too.
Barb
Happy Days!!!
Ryan has been gloriously happy since coming home from hospital. His workers here are so happy too. We are all planning a trip to DIsney World with Ryan in October (if the big bad witch allows). We will go for Mickey's Scary Halloween Party and all dress up!
Ryan has been on outings and today he will return to his day program where his friends have really been missing him. He will also get to go see the Lorax at the movies.
He LOVES his new mattress. Who wouldn't? It massages him all night. When I go in to check on him - he just looks so comfy and if he happens to be awake - he sports an ear to ear grin.
No word from Daddy dearest. He will suddenly demand to have him brought to him in the near future. But we'll roll with it.
Finally getting a break and it feels so good!
Barb
So awesome Barb!!! Having your sweet son home and happy has to be the greatest feeling ever!
Barb,
SO glad that Ryan LOVES his new mattress ... yes, it sounds heavenly! Amazing how it can make such a difference! Such wonderful changes in all your lives from just a couple of months ago ... so happy for all of you!
Summer xx
Thanks Summer!
Ryan is healthy & happy. We all feel he is doing better than he has in probably a year!
Today we took him for a boat ride. He was so happy! Just lounged on the seat with his feet up.
That nightmare of a supervisor has not made contact since he got home. Staff has told me first that she had a family crisis, then that she was on vacation. Very strange. But it has been refreshing. I know she'll be back - probably tommorrow but the rest of the staff have been handling things quite well.
Onward...
Barb
Barb~ your such a great mom and Ryan surely fairs well because of YOU!!!
Thanks Sandy! Raising Ryan has been a real challenge but I'm pleased to be able to rise to it and when he does well like he's doing right now - it is a high like no other.
Barb
So glad he is continuing to do well. Also glad that you are home and not in Florida right now. I went through a hurricane and it wasn't fun.
kat
Thanks Kat!
And you are SO right about Florida. I have been watching the hurricane's progress. Luckily, I have friends in Key West, Sanibel and Fort Myers and they're helped keep me posted.
When I was there in June we had Tropical Storm Debbie which almost became a hurricane. I learned A LOT about hurricanes then. Fortunately, the condo is concrete and mine is ground floor. It is one of the safer places. But who wants to be in all that rain anyway?
We've had a really hot, sunny summer (yes - even in Canada). It was over 90 again all w/e but today was gorgeous in the afternoon. Perfect temp ( a bit cooler) and sunny. Just loving it!
Barb
Today is my BOMBAVERSARY! I did not think I would remember. Trouble is - it is also a couple of birthdays which I remember on the same day.
My daughter's friend, Chelsea turns 23 today. She turned 12 on the day my husband was arrested and our marriage ended. I will never forget getting the phone calls from the Police that they were keeping him in Jail overnight and that I was NOT to pick him up as he was uttering death threats to them about me. Unbelievable!!!
I also remember my own 12 year old daughter being in the room and I was trying not to let her hear most of the conversation. UGH UGH UGH!
I am SO lucky to be rid of that horror. Once in a blue moon - I remember. Scary stuff!
Ex texted me last night to ask about Ryan. 2 weeks after his release from hospital. At least he asked I guess.
My life is about a thousand times better without him in it. Today I will celebrate - HIS LEAVING!!! Good riddance!
Barb
Back to the original subject matter - the nursing agency supervisor from Hell.
So...
When we negotiated the contract last June (which was never a real negotiation as she did not give in on a single issue) - she promised me they would work on walking daily, take him swimming and we were to meet about him going to Florida in October. He went into hospital shortly after and everything was put on hold.
So Ryan is out of hospital and doing much better than before he went in. Guess what? Not only do they not walk him or take him to the pool - yesterday she dropped the bomb that she will only release one worker to go with me to take him to Disney World and since that worker can't handle it completely on her own - the trip is off!
I cannot believe that I deal with this garbage. But there is no other agency here that can handle it.
I did not sleep all night.
Barb
Thanks G! I know you're right. I would love to get rid of her completely. Wish you and Gabby could come - how fun would that be????
Anyway - I'm off to celebrate my daughter's birthday and wine tasting with my son, Josh, my Dad etc. LOVE my family!
Thanks for the sweet comments on the photo.
Barb
Barb...are there specific reasons to go through an agency vs a specific person or people?
I know for our waiver services, they want us to use agencies but we can also get our own people, as long as they are cleared through the agency
Yes -! Thus is what I've been thinking. Trouble is being in a new town & it's rural. Im going to look at more options but I think more than one care plan is best
Fig: Sorry I didn't reply till now - was mostly offline due to being out of town.
Most of it is not knowing enough people here. And as Gineen points out - the reliability.
The agency I use has his care nailed. THey are fabulous. Their reliability - the best ever. But the supervisor [censored]! she is like Hitler. She is like this with everyone.
She is a 30something pompous lesbian. And trust me - I'm no homophobic in any sense of the word. I mention her orientation because it really seems that she is so defensive about her lifestyle that she extends that defensive/bossy/cockiness to all her dealings. And trust me - she gouges and bosses EVERYONE! From the government liaisons to the medical supply vendors to the physiotherapists, OT & dieticians - EVERYONE complains about her. She is a BEEYOTCH of the worst kind.
So - the eternal question. Do I do what is best for Ryan's health care or for the emotional wellbeing of all of us (him included)?
This morning she emailed me back - furious that I had actually SPOKEN to one of the workers about the Disney Trip after she had told me the worker was unavailable to me. Ummm - all the workers had been talking to me about it for some time.
I AM FLIPPING! This is not good for my health.
Anyone want to go to Disney World???
Barb
I won't read your thread again, not sure why I did this morning. I can't believe what I just read. My .02, I've met many straight women with the same personality traits you describe.
I can understand your anger at this person but your ad hominem statement adds nothing to your point.
labug: Thanks for your comment. It is not what my spewing was about, though.
My point was that she seems to be so defensive about her gay rights - although there is no need since myself and others who deal with her and also with me have noticed this. We do not care at all that she is gay. I have dozens of gay friends. The point I was making was that she seems to use her defensiveness of her lifestyle to defend her right to control everyone and everything around her. This was NOT meant that all that she is defensive because she is gay. None of my other gay friends are defensive like this but it is evident that she uses this as an "in your face" kind of behaviour.
I did not write it in order to pi$$ you or anyone else off. Obviously you have already made a judgement of me by what you read last week when you really don't know me or my situation at all. If you choose to not read my thread - that is fine. I am always open to comments but I can see you do not get where I am coming from.
Barb
Isn't there someone over the supervisor's head that you could go to? I see her as running things day to day but she has to have a boss somewhere I would think.
I would do the part time private/part time agency if I were you. The stress of the supervisor has to be enough to drive even a saint crazy! Hang in there. oh and how soon is your trip?
kat
Hi Kat,
No - she owns the small private company. I am looking into alternatives - the best I can do I guess.
Had planned his trip for 3rd week of Oct to accomodate her workers who are in school. I can be flexible, though. In fact - November/early December is better for me.
Our local government supervisor (who knows the whole story well) suggests I keep her on for her reliability and good nursing practise but find private for any extra stuff (like overnights, trips etc). And I still thinking of a live-in nurse/nanny - but that's a big change.
It never ends...
Thanks for looking at the big picture, not just my rants when I'm exasperated!
Barb
I'm sure it has got to be so exasperating to be stuck working with someone who is so people un-friendly. I don't deal well with people like that. Living in the beautiful surroundings does limit your options I'm sure. The idea of part-time agency/part-time private sounds like a winner if you can find someone who is skilled enough to help Ryan.
So sorry you are stuck in this grind.
Thanks Mish
My first knee jerk reaction today was to fire back an appropriate but angry response. But after all my time in D B - I have learned not to. I have to consider what my goal is & what writing that is likely to accomplish. So I didn't. & I'm ad I didnt
Going to list my options & keep plugging away at it. Trying. It tote this eat me up from the inside out
Barb
WOW - lots of typos. No - I was not drunk. I was texting without my glasses on at the dentist. Better not try that again. LOL
Barb
So today is 9 - 11. I'm sure everyone one of us can remember where we were and what we were doing that day.
My horror began a few days before. My marriage broke up and I was just learning about the affair. My ex had just moved out. My kids saw their family being destroyed then it seemed like the world was falling apart too.
My youngest, Ashley, turned 13 the day after 9 - 11 (yes, she turns 24 tomorrow). I had bought her tickets to Backstreet Boys in Toronto on her birthday. Strangely, her dad had not wanted to go (figured that out too late). It did not look like they would even perform but announced that afternoon they were going ahead in honour of a band member who was on one of the planes that went down.
So we drove to Toronto. Went to a nice restaurant. She couldn't eat. Felt ill. (No wonder, I guess). I paid $700 for the 2 tickets. Guess what? She lay down on the seat and never lifted her head to even see them!
That's what I remember of 9 - 11. But knowing that my kids were home and safe that day - that is what I needed. And we clung together. And we watched in horror like everyone else. And now we remember all those who died. And we are grateful for surviving and although the world has changed. We are all stronger for it.
Barb
I remember being so scared that my friends from Bostonwere on a flight but of course scared for my flight attendant friends. At first they didn't say which carrier was hijacked just an American carrier.
All my training started going through my head. Where were the entire crew, how many hijackers, on and on. I watched and cried the whole day. I was so relieved that there were no UsAirways planes involved but devasted none the less.
All the reasons I quit flying came back to me. The Usairways crash of 1994 was my deciding factor. I lost friends and crew mates from my Philly base. I kept flying until I wasn't scared anymore. I took the terrorist attacks the same way, I couldnt stop living because I was afraid of another attack.
Every 9-11 I feel I owe the victims the attention of their last moments. God bless us all.
kat
I was on my way to work and heard it on the radio...I thought it was one of the morning show pranks...it wasn't believable to me until I got into the level 5 EBD school full of thuggy kids who were all silent and glued to the TV that it was real to me. That night, my friend and I had tickets to see Riverdance and the performers had 5 mins of silence for those lost. It was so powerful to be sitting in a huge theater of complete silence.
We were talking about it in school today and the kids I am teaching today will never know a world where they could go to the airport and see someone onto the plane
or not go through security checkpoints
or see the twin towers in the New York skyline
kat, Fig & Gineen,
Reading your posts just brings it all back. I have goosebumps. One would have to be a hermit not to be affected by it all.
kat: It must have been so hard to lose friends/co-workers. I fly all the time but I was once in a microburst where all the flight attendants were injured. When we landed in Baltimore - they were all taken off on stretchers - that was terrifying. But as you say - you need to get back up there. Life goes on.
Fig: I can relate. The Backstreet Boys did a candlelight vigil - it was very somber. The Air Canada Center (huge) was only about 1/3 full. There were many threats of bombing to Union Station in Toronto and the ACC is right there so most people just didn't go. Not sure why we did.
Gineen: You must have been so afraid for your dad. I think there was nothing worse than worrying about where your family members were. And our exes were real dicks! Mine came over that night to bring Ashley's birthday gift to her AND pack up his CDs right in front of her! So she is stressed over his leaving and 9-11 but he actually packed his things right in front of her rather than worrying about the impact. And strangely - I could sense that OW had picked out Ashley's gifts. The OW he was vehemenently denying. Hmmm... I told him he was being insensitive to her feelings. He replied that "She is aware I'm leaving". UGH...
On Friday he texted me "You never told me that Ryan has a Superbug!". I thought "what???". He wrote back a little while later. "Oh, I was just reading a text you sent me in June. I was mixed up". DUH!
Barb
Gineen: You're so right. I KNOW my ex has lost his marbles. We just have a laugh at his expense more often than not these days. Even the kids tell me stories and laugh all the time. But at least we're not fighting...
I know what you mean about it being a bright spot. We try not to focus on the sadness of 9-11 (with all due respect thought) - we celebrate this week - the birth of a lovely girl!
Barb
I was sitting at my desk starting to go through my daily work when I got a call from a client who was in NYC on his way to La Guardia when the first plane hit. He said the cab driver stopped in the middle of the bridge and got out of the car after he saw it in the rearview mirror. The got to the other side of the bridge, he told the driver to turn around and go back to the city. While I was on the phone with him the other plane hit. All I heard from him was a gasp and then he said he didn't know what was going on but it was horrible. The calls started flooding in about an hour later from my clients who were trapped all over the globe. It was such a helpless feeling to have to tell them that they were on their own and I couldn't get them home.
The beauty of humanity did come shining through during that time of crisis though. I had clients call me from California who went to the Los Angeles airport looking to rent a car and drive back to Georgia. There were no cars available but there were people who were walking through the terminal lobby with signs saying they had a car rented and were driving to such and such a city and had room for 3 more people. That is how my clients got home. They joined forces with a total stranger to get back. I had a CEO of one of our largest companies who was stuck in Austin. He got on a Greyhound bus! The next morning I called him to see how he was doing. He was outside Birmingham and he said the atmosphere on that bus was actually comforting. Everyone on it was in the same predicament.
I had a client who was stuck in Detroit who rented a U-haul and crammed two more people in to drive south. He went out of his way to drop each of them at their homes on his way back to Atlanta.
They are all memorable but one client's situation stands out to me most. He was in Prague at a conference. He had just checked out of his hotel and gone to the airport to come home. His flight had been delayed so he was going to miss his connection so he just opted to stay in Prague one more night. He went back to the hotel but they were sold out for that night. He asked if they could help find him a room in a sister hotel and that is when the first plane hit. Then the second. He discovered that the airspace was shut down and he had no idea when he could come home. The hotels were all sold out in the city! He had no place to go and that is when one of the hotel staff stepped forward and offered him a room in his home with his family until he could get home. WOW! He allowed a total stranger to come and stay with him and his wife and kids. That was amazing!
I just had to share that with you. I didn't have a chance to yesterday.
Hope you all have a blessed day and remember that humanity is not lost in most people, it's just buried a little until an extreme circumstance bring it out.
Mish: Your stories have made my day! Sometimes the worst times bring out the very best in people.
My parents were in Vancouver vacationing when 9-11 happened. They were unable to come home. It was 5 days before they could get on a plane but - just as you witnessed - people stepped fwd and made them comfortable. One of my friends lived there. She had no problem putting them up, helping them with calls to agents etc. They could afford a hotel - but they are elderly and it was just so comforting for them to be with her (they also knew here fairly well through me).
Here in Canada when I was a newlywed - we had the storm of the century. I lived on the 3rd floor of an apt - high above it. That's where I needed to be to weather it. Everything was shut down. Cars had to be ditched in the middle of the road. People were taken to hospitals on snowmobiles. Phones were all out. My husband had worked the night shift so he was home sleeping. We were safe and had enough food in the freezer to get by (it was a week before we ventured out the grocery store on foot - luckily one block away). But my dad was stuck at work and my brother at college. After toughing it out for one night - each was offered a place to stay with a colleague nearby although they had to bundle up with ANYTHING they could find and walk the couple of blocks to the homes.
Our radio played nothing but "Operation Antifreeze" where people called in with pleas for food, medication, medical emergencies, if they were stranded etc and others called in to offer "safe places" in their homes with hot spaghetti or stew or just a clean bed. Hardly anyone died. Because they DID have a place to go.
It has impacted me for the rest of my life. Always keep extra food on hand. Always offer a helping hand. Make people feel comfortable.
Bar
Ha - Just signed my last post "BAR"...
Anyway...
The supervisor from Hell called me this morning. Sort of to apologize although some people (like her) don't exactly ever do that. My husband was like that. Never ever said "I'm sorry" - he liked to "explain" himself. UGH. That does not work for me. Josh says "I'm sorry" even if he isn't the one who causes me the problem. In fact - he never causes a problem.
Anyway...
So she got a call from the government supervisor about my upset. And she wished to explain that she had 6 staff off on sick leave. But she would give me one staff to take the trip if I could provide another. So I'm searching for "the other". I told her that she had not explained ANYTHING to me and took a strip off of me for talking to her employee who works in my house. I had not undermined her - we had been continuing an ongoing discussion. There are 5 workers in my house and I speak to them daily - we have an excellent relationship. I like them all - they do a great job. So then she understood. I had to suck it up and get past it all because it is the only thing that would help.
So I'm back to making the plans. I do believe I can make it all work now. And I feel better. But not happy I lost a few nights sleep and my blood pressure is sky high.
I DO NOT LIKE the supervisor. I doubt I will ever like her. Every journal entry I've made in the past 16 months seems to be about her. Like fingernails on the blackboard. But I will do my best for my son. As always.
Barb
Ryan is going to Disney World!!!! Disney asked me if we were celebrating anything. I said "YES - that Ryan is alive". Seriously... His last trip was booked 2 years ago and he ended up in a coma at the time. In fact (if any of you remember) - the day we went to the hospital I was told he would NOT live. But I kicked and screamed and demanded they do everything humanly possible to save him and today he is laughing, happy, going off to see his friends. And excited about going to WDW next month.
Not many people are in a coma TWICE! Ryan's first time (at age 4) - lasted 6 weeks on life support. Last time - 2 weeks. I don't ever want to go there again.
So - I looked into caregivers in Orlando. Emailed a couple of places. No one even bothered to get back to me. So I posted what I wanted to my friends on Facebook. And I got quite a few good options. Now I just need to decide the best fit for our trip. Many of my former students are trained in the nursing/psw field - who knew? And everyone wants to go to Disney World. So - it's all a go and I booked it yesterday. I'm so excited!!! Not like I never go (I am there a few times a year) but taking Ry is just the best!
So we will celebrate Ryan's life with RYAN!!! and Mickey & friends. It will be a blast!
Barb
AWESOME!!!!!!!!!!!! That is the perfect way to celebrate your amazing son!
YAY!!!!! Your a great mom!!!
someday, I would love to bring Finn and the boys there...
I can't imagine a better celebration than life
A side question Barb...
does Ryan have a g-tube?
Finn, as you know, just got her's and it seems to weep a lot...I am assuming this is normal?
But she also has some discoloration on the opposite side of her body...her g-tube/mic-key button is on her left side. Her right side, lower stomach all the way up to her arm pit. It looks like someone shaded her in with pencil.
She also has ehlers danlos syndrome which, in part, means she bruises easier but, I am wondering if bruising after this surgery is normal?
Thanks to each of you, my cheerleaders! It should not be a fight to get your agency to agree to let you take a worker (or 2) to Disneyworld - but that's my agency supervisor.
Thanks for saying I'm a great mom! That makes me happy. I love Ryan so much and when you have a child (even when they're grown) - you always want to do more than you sometimes can. But when they miss out on so many things and suffer so much - you just want to make it up when you can.
I took Gineen's suggestion and decided to hire privately (the 2nd worker). I tried some of my former workers but they couldn't get the time off. But when I put it on Facebook - BAM!!! I was shocked at how many trained friends I have on FB. I doubt I would have difficulty finding someone to go next time.
The girl I'm hiring privately is the daughter of a new friend here. She has babysat for Ryan and is eager to learn what to do to help. She got married today! We will get together and go over it all soon.
The girl that the agency is allowing to go has worked with Ryan since May. She is young and uber excited! I'm glad it is these 2. They will both get along (they're both extremely bubbly) & they will make it so much fun for Ryan.
So - got the hotel booked, tickets bought and airfare etc. We're good to go!
Barb
Fig,
I'm sure you will get the chance to go at some time - you MUST. I suggest you look into places that will grant wishes. I was offered such a trip at one point - before I had been able to take Ryan. And I wanted to take him SO badly (We had our first trip with our 2 little boys booked when Ryan got sick at age 4). When he was in a coma then - I found his bag all packed (by him) with his swimsuit, a Mickey Mouse etc in it. That just about killed me.
But when I was offered the trip - it was the week that Ashley was due. And the deal was - they would take him there and back in the same day. And none of us could go with him. They had nurses, drs and firefighters going. I just wasn't comfortable with it. But 2 years later - my mom (now deceased) stepped up and paid for herself, Ryan, Ashley & I to go (we had already taken Brandon). & I took him every other year after that.
The weepiness is something we see all the time. We just keep a large piece of gauze around it. But the "shading" you describe is not something I've seen before. Perhaps because she is smaller? Ryan's is not a button. He only got his about 4 years ago. We used a nasal gastric tube till then. Weird, I know, but I was trying to avoid surgery.
If you're in doubt - take her to the surgeon and have it checked out. Ry goes back fairly often. His tube gets clogged or displaced at least every couple of months but its a quick fix.
Good luck - I know its not easy.
Barb
Finn's epilepsy, autism and feeding tube don't count for wish making organizations.
They told us to try again in a couple of years as their budgets are tight now as well and they are prioritizing for kids whose life expectancy is greatly limited.
while I am grateful that she doesn't fit that description...I know her life expectancy IS diminished by her special needs.
Cori or I will be calling her dr tomorrow.
We have to get her replacement mic-key anyway...not excited for when she yanks it out (which we have been assured will happen) siiiiiiiiiiiiiigh
I am so glad your trip is going to happen. Angels are watching over Ryan for sure
Thanks Fig,
There are several wish making places. Don't give up. Someone might be able to help.
Tonight on tv there was a 14 year old with a tumour in her eye (couldn't tell - she was so gorgeous and cute). Anyway - Make A Wish Foundation heard that she wanted to go to Tahiti. So they granted her wish and totally surprised her - she came home to a Tiki Bar, special cake, party with her friends and hula dancers. I was excited to watch it.
I was sad that I turned down the one offer I got from Make a Wish (because I was having the baby right at that time), but the one reason I got pleasure from it was because another child got to go in his place. And he has now been a few times.
He has been having one good day after another. He is happy and bright. Today he went to the county fair and fed cows and even held a large snake (YUCK!).
I hate "CRITERIA" and labelling. I hate when people don't just do the right thing - what is in their heart - rather than making you jump through hoops. I get it. I have lived it for 29 years now.
Barb