Hi everyone. I posted my first message quite a few weeks ago after my husband had a stroke, your responses were amazing and gave me a lot of hope and comfort. After 13 of the most horrendous weeks of our lives, my husband is coming home on 31.10.23. Unfortunately he hasn’t progressed at all in terms of his physical movement , he is still paralysed down his right side. His speech is pretty much non existent although he does try very hard to get words out. His concentration is huge, but his disappointment when the words fail him is really sad.
The rehab ward he has been on have said that he has plateaued with his recovery and would now need to be discharged, either to his home or a facility that would give him the care he needs. This was an easy decision for me and he is coming home,
I have had to make massive alterations to our home as access and ease of wheelchair movement was impossible, as was the bathroom situation.
The physio team have provided him an appropriate bed, hoist , chair etc, but then pretty much said, going forward his care team, which will be 2 ladies 4 times a day is chargeable. Ok I accept that any saving my husband has will be swallowed up by his care, but what happens when that has gone? Who takes care of him then?
I have paid for all the alterations to the house as I was told that my requirements were vast and I would need a referral for any financial help which could take upto 6 months to complete. I can’t leave him in a hospital or nursing home for that amount of time, so I just got in with it.
The social worker assigned to our case has been pretty rubbish and I don’t mean to bad mouth her, but she visited my husband when I wasn’t there, discussed his care plan and the financial implications and moved forward with his discharge plan, based on a conversation with a man that cannot speak, can not make a decision between tea and coffee and barely understands what’s going on. She left me a note on his bedside table to tell me the outcome. I found this unacceptable and told her as much.
I have no idea if there are any organisations that could maybe help me with a grant or any financial help. We are both pensioners, with. Small amount of savings that look like they will be swallowed up very quickly.
The social worker has told me nothing, except that his care is chargeable and not to take out any large amounts of cash that I can’t account for.
I’m sorry for the long rant, but I’m feeling a bit lost.
My husband is incontinent and I don’t know how or where I would get the sanitary wear he requires. It’s all so very overwhelming.!
Sooo sorry to hear this. … the social worker should never have gone and interviewed your husband without you being there … me and my husband both in late 70s and worked all our lives, so have very little knowledge of various benefits … also only a very small bank account as we have to pay for everything … however, we both served in the army (that’s how we met sooo long ago now) and we did approach the local SSAFA organisation … they are great and someone came out and talked to us and said what things they could help with … we also contacted the local Stroke Association who helped with grab bars, hand hold things etc in bathroom and outside steps , so always good idea to get in touch with them … hope things get a bit better for you xx Val x
You need to express your concerns to OT and physio that you will probably get to settle him in. Talk to the Stroke Association and talk about financial help, the sooner you claim the better, payment takes time to be settled. Don’t be in a hurry to spend your savings, there is all sorts of help available, it is funded. There are living expenses and equipment which can become available as you need them.
It is important for your and his morale to realise that improvement is possible and actually likely despite what the professionals might tell you. I came out of hospital bed bound only able to move when assisted. Four months after my stroke there was no change.
But without going through my story, after 20 months I can now walk a little, tackle the stairs and have some use in my right hand and arm.
I think those first months where nothing much showed were periods when I needed to rest and repair before starting the major task of getting up and moving about. It was horribly depressing and I thought I had no future, which no doubt was what my wife also thought.
Be hopeful, but be very very patient, realise how important rest and what looks like inaction is.
Encouragement and a smile to go with it has been a great help for me.
Be brave, be kind to yourselves, there is a better life.
On this forum you will discover the journeys that others have taken. Folk here will share their experiences and listen to what you have to say.
@DJ11 i would formally complain about the social worker as I think that is totally unacceptable behaviour.
I’d advise you speak to Citizen’s Advice ASAP as they will be able to help you with what financial help is available to you. Also talk to your local council as they will have people who can advise on things yoh may be entitled too. You should be able to claim attendance allowance & i’d start the ball rolling ASAP as it can take an age to sort.
Once your savings have depleted to a certain level (sirry don’t know the level) you will need another financial assessment done. Make sure you ask in plenty of time & don’t wait until money has run out.
The Stroke Association will be able to offer advice on places you can go to for help too.
If either of you were ever a civil servant then try the charity for civil servants.
As @Bobbi says don’t be in too much of a hurry to spend your savings you should be able to get some help. If you have to have another financial assessment done in the future You will need to be able to account for what you’ve spent. It’s not ideal but there are people that would fritter it away so they didn’t have to pay for care & that mesns everyone has to prove they haven’t done so.
Good luck with your husbands discharge. Hope it all goes well. Look after yourself too.
I’m sure the stroke association will cover it but it might be an idea to apply for power of attorney. This gives you a formal say in financial and health matters.
Only do this on the Gov web page. There are lots of other web sites which will charge you unnecessary amounts.
If you do get awarded one of the mean tested benefits the cost falls to £41. I would suggest this to the other half of anyone who has had a stroke.
You’ve been given a lot of sound advice I won’t repeat, and probably enough to be going on with. So don’t waste time and refuse to bring your husband home until all this is sorted if you have to. Don’t let any of them walk all over you. They are working for you and your husband, not the other way around.
And that is absolute twaddle and the rehab ward know this…or they should! You only have to read the progressions people have made on here to know this. It doesn’t plateau but it does slow down after the first 6 months.
I had 2 TIA’s nearly 3 years ago. I had right side weakness although I could walk with assistance my arm hugged my chest and had balance issues. I also had cognitive issues, couldn’t speak, couldn’t write, aphasia, fatigue. 2 years later I was attending strength & balance classes, going to the gym a couple days a week, back driving and writing, talking after a fashion as I still have mild aphasia. And just 4 months ago I was experiencing further improvement with cognition and balance is no longer an issue.
Though my stroke condition may not have been as severe your husband’s, I do think it does go to show that progression doesn’t plateau. I thought that myself every time I stopped seeing any further improvements, that I’d reached that plateau and this was as good it gets. Even 2½ years on I still thought that, and every time my brain just proves me wrong yet again.
The one thing I did do to improve my speech was reading everything out loud. We were in lockdown at the time and speech therapy was to be conducted over the phone, would you believe Reading aloud books, leaflets anything with words on it and saying the name of everything I used in the house. Oh it was all a load of babble and I struggled in the beginning and I gave the family a lot of laughs with my rehab antics But I got there in the end and that’s what matters
Your husband will there too if he wants it enough. Don’t ever give up hope, don’t ever settle for less.
Other than I am unsure if I agree with the wants it enough part, I wholeheartedly and enthusiastically agree with what Emerald Eyes has said. Wanting it enough is important to keep one continuing to work on recovery and is much needed, but I would not want someone who is trying to think they are not trying hard enough, or those around them to accuse them of the same. At over two years, I am still getting better in fits and starts. A little at a time, regressing here and there, but going forward again after short rests. There is plenty of hope.
As far as a decision to go home or to a facility…if a facility offers further therapy, that might be good, if not, home is definitely better, and therapy can continue there either through professionals or your own research. This is a good place to find out what has helped others.
Best wishes and wonderful thoughts for your blessings in this journey. For both of you. It isn’t a simple journey, but it does have it’s rewards, that become more evident over time.
I know I haven’t really phrased that correctly, I just couldn’t quite figure out the right way in my head…funky brain syndrome…and my post was getting rather long…so you can have the elongated wordy version DeAnn, I know you won’t mind
In the very early days post stroke for me, I was mentally numb for want of a better word, the brain stuck in neutral…lights on but no one home almost. Technically, yes, I knew what had to be done to get myself moving but my inspiration, motivation, drive switches were all stuck in neutral. My brain was set to pause while it work hard to repair the damage done…or that was an area that was damage in the stroke. So I really needed people like my family and therapists to be my motivators and spur me on until such time I could do it myself again, and I did
Having finished my therapy just a short time ago, I completely understand. I miss the motivation from therapists. I didn’t want them to think I was lazy so I worked hard to impress them. Maybe too much. I miss them since I have been kicked out. I liked having a motivator. My motivation now is to ensure my daughter has as little as possible to do so she will have more time for herself, for my grandson, and to get me out of this house once in awhile. selfish much?
I wish you could take me out as well. We would have an wonderful time, I am sure. You are always so awesome! By the way… there was nothing wrong with your answer. Your thinking was fine. I expanded because I have often heard people tell me about others not trying hard enough, as well as accusing myself of the same.
This makes me so cross. My husband had a big stroke 2 years ago. After 13 weeks he had yes and no, could stand in a hoist but could not walk across a room. At six months he could do stairs walk outside 10m and had lots of two and three word phrases. Now he can walk 200m outside, hobble without a stick inside and has lots of phrases. Every stroke is different but nobody has achieved maximum recovery at three months. A remarkable % of those who cannot walk at three months do by a year.
We were lucky that my husband could walk indoors when discharged. But I pay for physio three times a week and still see improvement now. So if you can possibly swap some of the care money to home neuro specialist physios do. If he gets to walk a few paces it will save in the end.
You may get carers allowance and various benefits. Do seek help at CAB or stroke association early.
I thought the commonly held position was that the rate of progress was highest in the first 3 months and it starts to slow after then. Not that it stops.
The idea which has been shown to be false was the idea for many types of strokes was that progression stops at a certain point, it appears it can continue for far far longer than initially thought.
There are lots of generalisations made about strokes. I think strokes are like ice cream. Lots of flavours/variations and no two are the same. Even people who have the stroke in the exact same place will have outcome variation.
For physio, have a look around at what might be available locally.
For example here in Bristol, there is an MS centre. They are mostly geared to MS as you may expect but extend the service to other brain injuries such as stroke. Fees are much less for 1 to 1 physio and even less again if able to join classes.
I found out about this via the local stroke charity, very good source of local information
I was told the same thing by the physio’s in hospital. “The first three months are when most of the recovery takes place. Then it slows up during the next three months. After that, you may as well whistle for it”.
However, my physio who visits tells me that recovery never really stops. It slows down, but continuing to work with exercises maintains the recovery momentum albeit at a slower rate.
Good enough for me.