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heyjude8952 Asked January 2022

Would like information/support on stroke recovery.

Hubby had stroke in July. We are now going to outpatient therapy twice a week and recovery is coming but oh so slow. He seems to have more 'off ' days recently and I never know if he is being self-indulgent or if he's truly not feeling well or just depressed. I do ask him to do more for himself (he tells therapists he does) and then he pouts and we both have a bad day. We are together 24/7 but he doesn't want anyone other then me helping him, especially with personal care. Tired.

TChamp Jun 2022
Post-stroke depression is a common complication. It's estimated that about one third of stroke victims are affected by it. The depression is the result of biological and social/psychological factors. It usually requires psychiatric treatment. Depression in a post-stroke victim can hinder rehabilitation efforts.
Fawnby Jun 2022
It’s not just depression, etc. after a stroke. They don’t tell you about the contracting of muscles months or a year afterward. It’s very painful and may happen just when the patient thinks he’s recovering well. Also, cognitive decline happens but they think they’re just fine. And they may have sight deficiencies that affect driving but they don’t realize it or say anything if they do. My stroke patient insisted he was making a full recovery. He wasn’t and didn’t but he couldn’t accept reality. He was on meds for emotional lability but wouldn’t take them. His bad judgment was over the top, making everyday life extremely difficult for anyone around him. Expect the worst with stroke patients. Sad but there aren’t many positive stories out there.
AlvaDeer Jun 2022
The best, quickest and easiest recovery happens in the first two weeks to a month. Much swelling that might have existed goes down. Improvement can be dramatic. What you are left with after that takes tremendous amount of hard and diligent work. Your best guide is the OT and PT people now visiting you. Ask them how best to get information to guide you and what online sites they might send you to. There are many mental changes that go along with stroke so know that your hubby isn't "pouting". While there may be some worry and some depression, there may also be changes in the brain centers controlling emotion.
As where the stroke was located for your own information. Then go online as though you were a detective, looking for changes that may occur with injury to that area.
A neighbor of mine was recent told that you need to give yourself a year to know what you can get back, how changed or what changes might be permanent.
It is GREAT he doesn't want you helping him a whole lot. Motivation to get back to normal is a great pusher toward better health. Those who become helpless often end with well meaning loved ones enabling their helplessness.
Good luck. Do look for all the information you can find anywhere you can find it. I will hope for his full recovery.
Ask hubby to tell you about changes he notices. Reassure him that many may be changed, and that you will work round the others. Be sure to include laughter on the menu however you must. Funny movies or whatever. You both need the relief.

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MJ1929 Feb 2022
Too many people dismiss the emotional damage of a catastrophic event like a stroke. Your husband -- as well as you --needs emotional support in addition to the physical therapy. I suggest both of you looking into getting some kind of mental health treatment, because it’s unlikely he’ll ever return to where he was before the stroke. That’s a hard pill to swallow for anybody, and to expect him to simply “try harder,” to get better is only working on half the problem.

Nikki143 Feb 2022
Hi My name is Nikki and I am 43 years old and had a stroke in may 2017(when I was 38yrs . I am paralyzed on my whole left side and cannot dress myself still or bathe myself but after I joined a gym and found a trainer who would work with me despite being half paralyzed I do sit ups(with someone holding my legs and leg presses and lift weights with my left side and is able to now drive myself to the gym , but first I had to learn to walk and drive one handed and go through getting my license all over . I literally stayed in bed the first few years watching every show on Netflix and fealt terrible and got fat. I think anything he is able to do he should do it more. It took a few years but now my caregiver only spends around 25 minutes every morning to get me dressed and make some breakfast and I do as much as I possibly can when it comes to exercise . I was able to lose 45lbs and now have defined abs( by adding a heavy ball in between my arms while I hold the other hand . Just moving more like starting with in my bed like getting a rope around your paralyzed leg and pulling it with your non affected arm and also look up Flint Rehab videos . I started with that on a chair with a folding table and a cane and a water bottle to start . I also started Wellbutirin and I quit smoking and that's when I noticed that I hated being in bed anymore . I also felt a little hostile of my caregiver in the beginning . I would panic when he would leave me . But now I figured out after watching videos about displaced anger . What also worked was that I would keep throwing myself off the wheelchair for attention so he decided to start to just leave meon the floor having a childish fit .So I stopped in fear of possibly losing him. Omg I feel so lucky to have someone take care of me . I think when he try to move more . I hope this was helpful at all . Thank you for allowing me to vent a little .

Beatty Jan 2022
Many people make good recoveries from stroke. But this really varies (as FunkyGramdma & others said).

Many people, maybe even therapists, concentrate on the physical problems, a weak arm, getting walking again.

Damage inside the brain is not obvious to all. It can show on scans but a spouse will *see* the evidence of it in real life. The depression, apathy, memory changes, mood swings - can vary from minimal to massive depending on location & magnitude of blood clot/bleed.

I think of *recovery* working best as this;

* Accept this is the new normal.
* Look for what is still possible to enjoy & do. Embrace it.
* Set smaller, achievable goals.

Another way to put it is: Recovery is not a Cure, but a process of Adjustment.

I have met wonderful people who of course grieved their old pre-stroke life, yet found meaning & enjoyment again. Each refused to call themselves a 'stroke victim' but relabeled themselves a "Stroke Survivor". The ones who especially stood out... A painter who changed painiting styles, a sport player who took up gym weights instead, world travellers that changed to river cruises.

For some, the reality is more help is needed. Eg accepting aides to assist with very personal things like bathing/dressing is tricky. Acceptance by the survivor & also by the spouse.

Don't be held to emotional ransome over this. If needed - arrange it. Shrug that off as being just part of the human condition, (our physical frailty).

Look for things as a couple you can enjoy together. Look at old photos. Lunch out. Going to the movies etc.

My Mother hated the idea of bathing aides, but, enjoys the compliments when fresh & clean afterwards. My DH also likes to hear, hmm you smell good. (He's ok now, but no harm in training for the future 😉)

GardenArtist Jan 2022
This really is a question for the doctor who analyzed the stroke, reviewed the tests, and treated your husband.    Only a medical person can really diagnoses the severity and potential for recovery.

However, it's very good to know that your husband is in therapy.   As to "off-days", I think that given the pandemic, political friction, and uncertainty on many issues, anyone can have more "off days" than might have existed before all the political and medical chaos.

My father had a stroke at 87, then lived until he was 99.5 years old.   I don't think it's the age that's necessarily the dominant factor; it's also the condition he was in at the time of the stroke, any other co-existing factors, his own personal initiative and goals, and family support, among other issues.

CathyFavaro Jan 2022
The first rule of being a caregiver is setting the boundary that the person needing help does not get to decide if someone else helps or not. They need to know if you break down and get sick, they are in the hospital or a nursing home, so you need to stand up for yourself in that area.
Strokes are so challenging because depending on where in the brain it happened and how much damage occurred, dictates what the recovery could be like. Certainly depression is common after anything like this and its hard for the person to see the progress they have made when living in this more challenging body day in and out. I have also seen people with strokes have set backs if they get an infection so be aware of any urinary issues if he gets an infection or even like a bad cold.
Try to encourage and motivate him as best you can without being too over the top about it. Sometimes after a stroke we process slower so high energy can feel deflating.
Hope that helps some.
sp19690 Feb 2022
This exactly. She sounds like she is burning out and wants to bring in help but husband says no. She needs to talk with him about everything and give him options that allow her to get help, helping him that is not just her doing it all.
Tothill Jan 2022
My Dad had a massive stroke 7 years ago. I got the call to come as they did not think he would survive.

He did and is almost 93 now. He also participated in several studies on stroke recovery in the years that followed.

He continues to do daily exercises to maintain his recovery. The first ones he does in bed, then he lifts free weights, and gets on his exercise bike. He is much frailer now and just lifts the dumb bell bar without any weight on it.

If your husband does not do for himself, he will lose his ability to do anything.

Now to having help in. Tough toodles, you need the help. You cannot provide 24/7 care to an adult man, especially one who is not doing for himself.

When he pouts, walk away. Go out for a drive, meet a friend for coffee, do not let his poor attitude ruin your day.

Isthisrealyreal Jan 2022
You need to tell him that you can't do it all alone and ask what he is going to do if you end up in the hospital or dead because he doesn't want to accept help.

If he is lying to the PT, make it the truth by making him do what he says he is. He won't improve if he doesn't make the effort but, he can surely bring you down with his unreasonable expectations that only you can help him.

Tell him that you will be bringing an aid in weekly to let you have a break and if he doesn't like it then maybe he needs to go to a facility full-time so you don't die first.

funkygrandma59 Jan 2022
It's really going to depend on how massive his stroke was and his age as to how is recovery will go, as the more damage to his brain the longer it will take, and the older he is the longer it will take as well.
My husband had a massive stroke at the age of 48, which left him unable to walk, talk, read or write, and was paralyzed on his right side. After many months of physical, occupational and speech therapy he did relearn how to walk with a brace on, talk in short simple sentences, and do self care with his one good arm/hand. He however never could read or write again, other than his name.
We were told back in 1996 when he had his stroke that whatever he regained in the first 2 years after his stroke would be pretty much all he ever would. I don't know if that since has changed or not.
It definitely sounds like your husband needs to be put on an anti-depressant, if he's not already, because depression is very common with folks after they have had a stroke as it can be very life changing. My husband was on one for several years, until he learned to accept his new "normal."
It's very hard on both of you, this I know first hand, but it's important that he learn to do as much as possible for himself. You may want to have a private conversation with his therapists about the fact that what he's telling them and what he's actually doing are 2 different things. Then let them address things with him, so you don't have to be the bad guy.
Please make sure that you're taking time away for yourself as your care is as important as his. Don't forget that.
I wish you both the very best.

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