Husband sick and tired of being disabled

[Trisha2]

Really struggling to find things for my husband to do since his stroke 18 months ago. He spends most of the day in a wheelchair and is so frustrated that not being able to walk properly and only able to use one hand (the wrong one!). I take him out when the weather is good, I take him to a gym once a week for a rehab session, I encourage him to try to do more but he is absolutely sick and tired of sitting around. Fed up with rubbish TV, fed up not being able to do anything, fed up with his life to be honest.

Like many on here he was very active before his major stroke and barely had time to relax. He was happy being busy, working and meeting people, doing DIY, gardening, motorcycling, horse riding, walking on the beach etc. I hate to see him like this and I know it’s far worse for him but it is affecting me as I barely go out now and he needs so much help that I can’t really get stuck into anything, whether it’s a hobby or even spring cleaning or tidying the garden.

We tried two stroke groups. One was not very welcoming and was mainly for people who had strokes years ago and were quite cliquey. The other was a bit better but not really for us. We went about 6 times. Hardly anybody visits us - maybe they think they will catch something! He did see a counsellor many months ago but they didn’t gel and he is on an antidepressant. The GP was no help either.

[axnr911]

Hi Trisha-- Every stroke case is different, so I can only talk from my own condition and experience. ( I had been paralysed on my whole left side). After my stroke I had therapy 3 times a day for three weeks at the hospital.(Slowly some feeling came back to my left side. ) That’s when the real work began. Then when I went home, my husband took me to physical therapy twice a week for about five months. (It was very difficult and tiring. When I stopped going to therapy, I did my own therapy at home every day, trying to do leg lifts, working therapy clay with my affected hand. Walking a few steps at a time with a walker for weeks, then a quad cane for weeks, then a regular cane for weeks, then a few steps on my own–adding maybe 10 or 20 steps more each day. I kept a journal to keep track of my progress each day–no matter how small. Because after a stroke, the improvement is so small you don’t think you’re making any improvement–unless you look back and see where you were.
I’m just wondering, why your husband is only getting therapy once a week-- is he unable to do more? Also–I, too, got depressed and anxious. I did see a therapist for a while, and it did help me. Maybe a different therapist would help.
I think it would improve your husband’s attitude if there was some sort of therapy he could do every day, so he felt like he was working towards a goal and had some power over his situation. I am not a doctor or a specialist in any way concerning strokes. I’m just speaking as a friend and fellow stroke survivor. My thoughts are with you.

[ManjiB]

This is a tricky one Trisha.

Firstly, I would like to suggest I might know what you might be going through inasmuch as carer for my Mum I often found myself feeling helpless, feeling sorry for Mum and for myself, unable to have “me time”, abandoned by many of the friends and family who used to be around so much more before the stroke - pretty much all of the things you might be going through.

Abandoned also by the healthcare support teams who either didn’t know how to help or were “not allowed to help” by the system because of Mum’s age and the perception she was “frail”.

Mum was unable to use speech to communicate and this added a level of complexity as we were sometimes second guessing.

I guess the major difference might have been that Mum didn’t demonstrate the “sick and tired of being disabled” behaviour. If she was she hid it well. She had good days and bad days but she never came across as being “sick and tired of being disabled”.

Mum chose to accept that she had been dealt a massive blow (her stroke was extremely bad) and she had not been expected to survive it and because of this she was denied help and rehab support pretty much from the word go and so had to self-help. But this was Mum - she always was an independent person and nothing was ever going to stop her from doing what she might have wanted to do. She kept this mindset once hit with the stroke and so with this positive frame of mind and a desire to recover she continued to work out how she could do things for herself and with minimal help continued to recover.

I guess what I am not seeing, and maybe I am wrong, is the same attitude from your husband.

As I have never met him I cannot say why he might be feeling this way, but I can only go by how Mum approached her lot and whilst I accept we are all different, I have to say that unless you want to be helped you cannot be helped. I am not the stroke survivor and so I cannot speak from personal experience and sometimes I feel reluctant to say some of the things I say on this forum, speaking as an advocate for my Mum, but I do feel it has been her attitude, acceptance and desire to “get on with life and do the best she can” that has allowed her to recover to the extent she has.

Your husband had his stroke 18 months ago and that is a relatively short time. If he is to do what Mum has done, I feel he may have to change his mindset. I say this because there is only so much others can do for you.

If I am speaking out of turn or talking nonsense then I can only apologise but it is what I feel I have to say if I am to contribute to this forum based on our experience, which at the end of the day is very personal to us, but nevertheless, others can learn from this and they can take as much or as little as they want.

There are no magic pills or buttons you can press. This is one of the hardest challenges anyone will likely face, but if you want to improve, you first must want to improve and be prepared to put in the hard work.

Of course there will be some reading this who will think this is total and utter drivel and maybe it is, but it is the drivel that has brought us to where we are today.

Life is not easy, at least not for the vast majority of us and if we are ever to achieve any sense of satisfaction, sense of purpose or happiness then we first must envisage us doing this and then find a way to achieve this that works for us. This can be as simple as just doing a little of something every day and build on that.

Being sick and tired is a start because if you realise you are sick and tired then you acknowledge you need to do something so that you are not sick and tired.

What that is will depend very much on you (your husband) - you are just an instrument that will help him, but he must want to be helped.

I will also say that you as his carer must not let him drag you down. It is easy to start feeling sorry and helpless and angry etc. because this is someone you love dearly and it hurts to see someone hurting, but you have to accept there is only so much you can do and as far as I can tell you are doing as much as you can. The rest is up to your husband - it’s called tough love. Sometimes you have to say it as it is.

Wishing you and your husband all the best.

In closing, I say that if any of what I have said causes upset or any negativity, please forgive me and ignore what I have said. I am only speaking as I find.

[axnr911]

Trisha-- It’s me, Jeanne , again. Another thought. YOU need some relief. Can you pay someone to come in even a couple of hours a week, so you can have some time to yourself? It’s very necessary that you do. Nobody takes care of the caretaker. So, you have to find a way to take care of yourself.

[MinnieB]

I was in the same boat after my stroke. My walking is still not great and my ‘dominant’ hand can grip, but not open that well.
The feeling that you are trapped within 4 walls without the help of others is truly the most depressing thing in the world if you have been used to an active life. My first ambition was to ditch the wheelchair and it was tough going at first, but with hard work I managed it. Becoming mobile is all important but takes a lot of effort. I too went to the gym once a week, but most of my exercise was done at home. I had a full length mirror installed in a spare bedroom and a horizontal bar in front of the mirror. There are lots of exercises to do online (rehab HQ on YouTube is a good place to start) , which was useful because (depending on where you live) there is very little help out there! After about 18 months I was able to walk around the house/garden and drive an adapted car and that gave me the freedom to go anywhere on my own.

Also, it’s worth having a look online to see whether you have an MS therapy centre near you. They are now open to non-MS people and with a yearly membership fee provide many types of therapy at quite reasonable prices. They are also very social places to go for a chat, have a coffee and cake or just sit and relax.

It’s a long, depressing struggle to claw your way back to a better place, but it can be done with hard work and it’s well worth it in the end!

[ManjiB]

I totally agree with Jeanne @axnr911 with regards to looking after yourself. I think I may have said don’t let him drag you down. I don’t mean this in a nasty way, but sometimes we can get sucked in before we know it.

@MinnieB - what you say is excellent and it clearly shows what can be achieved. My question to you is how much of this was down to your mental attitude? I ask because @Trisha2 says husband is sick and tired of being disabled and so if this is the starting point or the point where you’re at, how do you motivate yourself to start thinking, perhaps as you did, I need to do something.

From what you say, you set yourself goals. You had an ambition to ditch the wheelchair. Maybe this helped you kick-start the journey to your ultimate rehab end goal which by the looks of it, you may have achieved - so well done for that.

If you were to say to Trisha’s husband that in order for him to get out of his being sick and tired he must do one thing to break out, what would that be? This has to be something he does or wants to do and not Trisha or anyone else would.

I/we are talking to Trisha - she is reaching out on behalf of her husband and I wonder if he should be the one coming on this forum and saying “Hey folks, I am sick and tired of being disabled. What can I do to help myself? What did you do? How did you break out?”

I really do think it’s about his attitude and with all the best will in the world, we can wax lyrical for as long as we like about what can be done, what we did, how we did it etc. but I believe that until and unless husband holds is hands up or reaches out Trisha is on an uphill struggle and she has no control over this.

That’s how I am seeing this. Trisha should bring husband here and he should speak for himself.

That’s pretty much all I can offer at this moment in time because I don’t know the person who I am offering this advice to and so I don’t know if I am barking up the wrong tree.

I firmly believe in order to help someone, they must first want to be helped.

I wish you all the best.

[Rups]

Since his stroke is fairly recent, 18 months, then he could be experiencing the five stages of grief … denial, anger, bargaining, depression, and acceptance. He could, perceivably, be in the depressive stage and has yet to reach acceptance. Why I suggest this is because stroke for some can be the loss of one’s former self. I didn’t experience this as I didn’t perceive the stroke I had in this way but many do. That sense of being fed up with the same limitations and restrictions is totally understandable, I’ve been through those patches, thankfully they have only lasted days at a time. When one feels this way, advice on what to do is fairly meagre as much will be rejected on the basis of mood and frustration with feeling hopeless and then all else seems hopeless or pointless. However, seeds can be planted in the mind that can bloom once there is acceptance of the stroke and the impetus lies with adjusting and adapting.

We are all different but here are some of the things I do to reset my mood; listen to audiobooks (BorrowBox is a free service that operates through the local library system), talk to strangers (I often go out and if I notice someone doing something, I’ll spark up a conversation, you’d be surprised at how willing people are to just chat), play with my cat (sometimes I spend time talking to and tickling my cat, brings comfort and calm to my day), collecting (I collect clocks, rare books, curiosities &c. Collecting can be a wonderful ongoing distraction that provides a sort of trivial purpose to life), retail therapy (bizarrely, shopping around online for something cheap I would like or need lifts my spirits through comparing products and doing a bit of research and then the added bonus of waiting for it to arrive and then unboxing it).

As an example; my Morphy Richards iron recently broke. The steam function conked, so I spent a few days doing some research on a new iron and found a cheap vintage Rowenta iron on eBay. This purchase gave me something to look forward to and will entertain me for months to come whenever I need to do the ironing.

These things are just what I find give me a little push when I start to stagnate with my feelings and everything feels empty. The key is tapping into those endorphin and dopamine hits that lift the mood and make the days feel worthwhile.

[Mrs5K]

@Trisha2 this must be so difficult for you both. As @ManjiB has said someone has to want to progress & move forward & unless they do there isn’t much you can do to make them.

Being in a wheelchair doesn’t mean life is over & there are many things he can do in his chair. They might not be what he used to do or even what he might want to do but trying something new might be a good thing. I make jigsaw puzzles for example. It is great rehab therapy for both trying to get the hand working but also cognitively aswell. And you only need 1 hand to do it. That’s just an example. Baking may be something else he can try. @Bobbi wasn’t able to use his right side but even though he only has slight use of it now he has done loads of baking & also gets out and about on a mobility scooter. I didn’t want to use a mobility scooter but I was struggling to get out & when I was out where I could go was limited as I can only manage a few steps. My scooter opened up the world a bit for me.

I can’t imagine how it must be for you both but I do know that if you don’t try you never improve. It isn’t easy & takes a lot of time & hard work but it is worth it.

You say you can’t leave him but could you? Maybe if you left him for a bit, with stuff he might need within reach, he might have to do a bit more for himself. The first time hubby left me I was terrified as was he. But nothing bad happened and it soon became a regular event and got easier each time.

Not sure if anything I have said is of any use but i hope it is.

Sending you both my best wishes

Ann

[EmeraldEyes]

Breaking through cliques and getting mobile have two things in common, they both require effort and consistency, repeat repeat repeat. And your husband will only get out what he is prepared to put in. In other words, if your husband doesn’t daily effort to walk, then he won’t walk!

At the same time, you can’t think that your husband is being lazy or given up, not putting in enough of an effort in to get more mobile himself. Because that could just as easily be a part of the brain that’s been damaged or adversely effected by his stroke.

His stroke is certainly worse than mine; and I can only speak from my own experience. There were times when I wished for a wheelchair or even just a stick. But my Aphasia prevented me from asking, but I’m glad I didn’t in the long run. It takes a great deal of effort, on a daily basis to rehabilitate yourself. You can’t just sit around waiting for your next therapy session, next physio, and you can’t wait around for your legs to just start working again. Every day he sits in that chair, his muscles are wasting away. Making it that much harder to come back from, because he’s now got 18 months of muscle wastage to rebuild on top of the relearning how to walk that his has to do. And that’s why I never got a wheelchair or a stick to start with.

As it was, I still lost an awful lot of muscle tone in that first year after my stroke….even though I was putting in the effort daily. But it’s not enough to maintain after a stroke because we need a lot of rest in that first year. And 5 years on, even though I’ve regained all that muscle, I’m still putting in that effort in daily. But, I can help lift a new fence panel into place….standing on my own two feet. I go to various fitness classes as well as weight resistance training at the gym. So in all, I do about 2hrs a day, 5 days a week. Some of the classes I attend are run by Age UK, I don’t just stick with stroke or rehab related, any gym or fitness group will do. I started off only being able to do the chair based exercises at AgeUK; after a couple years I moved up to the advanced class doing floor based circuit training/exercise.

You have to put in at the very least, an hour a day of physical exercise, upper body as well as lower. And it can be a hard slog at times but you are allowed days off. They are also a must to allow muscles time to recover

I suppose I was fortunate to have all my emotions shut down by my stroke. So it enabled me to just do! Exercise/retraining was just another item in a list of things to do today, each day, robotically. But I could think for myself. And I knew what I had to do to make myself better than I was.

The same goes for breaking into groups, cliques. Familiarity and friendships are built over time, they don’t just happen instantly either. And more often than not, it is you who has to take the first step. You go up and talk to someone, introduce yourself and explain why/what brought you here. Ask them questions like how they overcame the feeling of isolation. That’s how you strike conversations and break into the “cliques” and the friendships develops from there. So long as you keep coming back and speaking with those people. Before you know it you’ve become part of the clique.

I know this to be true because I’m one of the quiet ones, introverted. I had to overcome this when we had kids or they’d never develop any good social skills and I didn’t want to be the cause for hold them back. I’m a lot better now, my daughter says I’ll talk to anyone, but it took effort on my part to get there.

You have to be prepared to take chances, overcome self-consciousness for you to get what out of these groups. I say you gave up too soon. You need to give it at least 6 months to establish new friendships, not 6 weeks, that’s nothing to gaining trust. I say go back to that first group, they need you as much as you need them. Every stroke survivor story is unique, your experience is as invaluable to them as theirs is to you.

Tomorrow’s a new day, make Monday the start of a positive and proactive new week. You know what to expect in the stroke group new, so if you bake, maybe bring in something with you, that always goes down a treat and is a good ice breaker

Lorraine

[Rups]

@EmeraldEyes

You can’t just sit around waiting for your next therapy session, next physio, and you can’t wait around for your legs to just start working again

Aye, not just hundreds of repetitions, but thousands.

[Rups]

@EmeraldEyes

so if you bake, maybe bring in something with you, that always goes down a treat and is a good ice breaker

Or a cake modelled in this form …

[JimBob65]

@Trisha2

I will never forget the day my best friend came to see me at home, we had known each other for 45 years having started primary school on the same day, I’d been home about 4 months.

I told him I had come to a decision “ I can sit in this chair feeling sorry for myself and die not having tried. Or I can get up and make the best of having survived. I have made my decision.”

From that day I never looked back only forward. It takes determination, it takes a will not to be defeted by anything that can be overcome with effort. There may be feelings of failure and that its not worth the tears and the pain.

It is believe me, that was the best decision I have ever made in my life

[ManjiB]

@JimBob65

I can sit in this chair feeling sorry for myself and die not having tried. Or I can get up and make the best of having survived.

@Trisha2 - This is pretty much it.

It really is up to your husband.
Make no mistake, if he won’t do it for himself, no one will be able to help him.

Time is not important - he has to work at his pace and he has to be the judge of that. No one can tell him - they can offer guidance, but he has to know how much to push and when to stop, but unless he keeps it up it will not happen.

Some will recover in 3 months, others in 6 months, and yet many more in 3 years, 4 years or more. In actual fact you can never stop recovering right up to and until you have recovered fully which can and in my view be the ultimate goal. If you want it badly, you can do it.

Mum never gave up, she kept going and when she had a set back, she brushed it off and started again and she did this again and again, getting stronger all the time. That’s what happens when you put in the effort and you have the desire.

Age? Not a problem - Mum had her stroke when she was 89 and she was essentially written off. But she chose to do it her way, ignoring the professional naysayers and going for it, believing in herself.

It won’t be easy but if he goes for it, he will reap the rewards

[Rups]

@JimBob65

will never forget the day my best friend came to see me at home, we had known each other for 45 years having started primary school on the same day, I’d been home about 4 months.

That’s very sweet, I like stories like this. What a friend.

[EmeraldEyes]

@ManjiB

If you were to say to Trisha’s husband that in order for him to get out of his being sick and tired he must do one thing to break out, what would that be?

I have one, two actually, that he needs to start doing daily, as many times as he can throughout the day.

The first is trying to stand up and sit down again…even if he only lifts an inch two off the seat. And it doesn’t even matter that he has to use his arms because it’s building strength in them too. This can be done from any seat he’s sitting in. It’s all about activating and strengthening his leg muscles.

The second is strengthening his core muscles. Clench his abdominal muscles from pubic bone to top of ribs and use the force of that action to pull himself forward then relax back.

A third important one is clenching his glutes…his butt cheeks and his thigh muscles. These can be done whilst watch TV or doing nothing.

These are all things I would have been doing if I were stuck in a wheelchair. And these are all little exercises I did anyway and still do at home regardless of all the exercise I get.

And the more you do the easier it gets to do them…as your muscles get stronger. The more repetitions you build. Until you start testing your limits.

@Trisha2

I take him to a gym once a week for a rehab session,

What’s stopping him from using the gym outside of rehab session?

Lorraine

[pamelai1]

He could do something around the house to help. It helped me feel like I was making a contribution. Plus it means I can get my affected, dominant, hand involved too. Washing dishes, laying the table, preparing our tea - as far as I can (slow cooker is a godsend.), loading the washing machiner, unloading it. Pairing socks. There’s loads!!

[ManjiB]

Great tips from @EmeraldEyes and @pamelai1.

One of Mum’s favourite sayings goes like this …

“Tipe tipe sarovar bharai” - The lake fills up, drop by drop.

[EmeraldEyes]

Short term memory can be a big issue post stroke. My has improved a lot over the years. I can only suspect your husband’s is not….yet.

So, the thing with short term memory is that while you’re sitting having a cup of tea, a thought, consideration, good idea pops into your. And you think, I must try that, when I’ve finished my cup of tea. But by the time you’ve finished you’re cup of tea, you’ve forgotten! And that can go for every thought or idea you have in the day.

That’s why lists are good for setting things into routines. To remind him to exercises daily. But your husband will also struggle with making list because he has to write with his non dominant hand.

So it might be a good idea to sit down with him to discuss and make a list together. The lists can be as little as one or two items/activities/exercises for him to do each day.

You can do a separate list of exercises. This can even be broken down into upper and lower body body exercises.

When I went out on my daily walks…or should I say staggers…I always brought a hand activity to do along the the way. Such as a squeezy ball, grip trainer, I’ve even been known to regularly carry a can of milk to do bicep curls along the way…less risk of being arrested for carrying a dangerous weapon out in public So I’d leave my little dumbell at home

Anyway, that exercise list became ingrained, very much part of my daily routine and with brushing my teeth…with my stroke hand.

Lists are like setting little goals for yourself. They can give you a purpose, something to work towards, to strive for. And give you that wonderful sense of achievement when completed. It also encourages you to set new goals or limits once you find that list is not enough.

The other thing I wanted to point out is that he could still change for the better any day now. I was at about 16 months when I suddenly started signing up for exercise classes, dragged my mother-in-law with me for assistance…and chauffeur It was at 18 months when I started driving again. Things were switching on in my head, I know cognition was one of them because that was a very marked moment when we quite literally in process of buying a new car. That really was like a light bulb moment. And that’s when it really started picking up pace for me.

So you see, there is still a lot hope for and that’s why he needs to start exercising now, so that his body is ready for when that day comes. That could even be what he’s going through just now. Never give up hope.

Lorraine

[ManjiB]

@EmeraldEyes

The other thing I wanted to point out is that he could still change for the better any day now.

@EmeraldEyes

So you see, there is still a lot hope for and that’s why he needs to start exercising now, so that his body is ready for when that day comes. That could even be what he’s going through just now. Never give up hope.

Words worth repeating

[Amanirenas]

I had a few small thoughts (apologies if you already tried all this).

• Stroke Association website has a 12-week and 4-week exercise program for stroke survivors, with three different ability levels. Your husband would be able to manage the red set of exercises while using a wheelchair. Exercises for stroke survivors | Stroke Association
• See if there’s maybe some parts of the spring cleaning or gardening that he can help you with. The tasks might be tedious compared to activities he’s used to, but I was picturing them a bit like the Karate Kid training montage, slowly building up strength.
• Possibly some of your friends and family who aren’t visiting are worried about making more work for you or that your husband wouldn’t like being seen in a weakened state. They may feel like (or try to convince themselves that) you’re just being polite if you tell them to come round whenever they can. Ask them to visit at a specific date / time so they know that it’s a serious invitation.

Wishing health and recovery to you both.