Do I push the patient or go at their pace...?

Dear all,
As you may know my wife had a stroke back in June, she has been through hospital and rehab and is now back home with me. We have regular carer visits for personal care etc, but I was wondering at what pace should I be helping with her recovery. She does spend a lot of time in bed as sitting out in either her wheelchair or comfy chair is uncomfortable/painful for her. I feel I need to keep her active and try to get her out and about or at least into her chair once a day. Generally though she prefers the bed as she is more comfortable, but I don’t want to give in to that as I feel that is not helping her long term recovery. Or do I listen to what she wants and just be patient and see how things progress that way? It’s hard to know the best way to keep things moving etc. Any help would nbe much appreciated.
Mike. :slight_smile:

@mikeyoung Hi Mike, that’s a difficult one without knowing how badly your wife is affected. Apologies you may have said in another post & I’ve forgotten.
I would say if she can get out of bed she should. The longer someone stops in bed the weaker they are likely to become & of course bed sores become a risk. Is it worth speaking to the carers / GP to see if there is something you can do to make her chair more comfy for her?

Hi Mrs5K,
Thank you for your reply, that sounds like a good idea…
Yeah sorry, she had a serious stroke which has left her with right sided paralysis, and speech issues, she hasn’t lost any or her personality which I’m very grateful for. I find I’m constantly checking and trying to make sure she is feeling ok, some days are better than others, she can be quite bright and engaging, and there are times when she is quite down, and doesn’t communicate well what is wrong, which is quite frustrating. You sometimes feel you’re a bit out of your depth when it comes to knowing what or how to help. I will speak to the carers and see if they have some ideas… one thing I want to try is getting her a more comfortable wheelchair, she may then feel like spending more time out of bed wich will be good.

Can you take her for trips out in her wheelchair?

Hi Janetb,
Yeah I bought a wheelchar accesible vehicle, which is great when she is feeling up to a trip out, and I do take her out in the chair for a bit of fresh air etc from the house…

@mikeyoung it’s good to hear your wife hasn’t lost her personality. That must make it a bit easier for you. A more comfortable wheelchair sounds like a great idea. You can also buy comfy cushions for wheelchairs. I remember getting one for my dad but it was a fee years ago now so can’t remember where from.
Maybe you could look at whether she can have any more / different pain relief so she’s more comfy when you do get her in her chair.
Is some of her reluctance fear maybe? My dad used to think he was going to fall all the time and it was difficult to reassure him that that wasn’t the case.
Really hope you manage to get her up and about more and that she is more comfy too.

hi Mrs5K, that’s interersting the fear of falling, as that was something she suffered from before the stroke, so maybe that is a factor… I think I will ask the doctors about the pain management as I think that is behind a lot of her issues actually… so we’ll see if that helps :slightly_smiling_face:

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When I was beginning to learn to walk again, it was very exhausting. I would try to add a few steps on to my regimen every few days. I kept a small notebook and jotted down my progress. It gave me goals, and I could look at it and prove to myself that things really were getting better. That made me try harder and want to add more steps. I think it’s important to be out of bed. And it’s also important to feel like you’re making progress. Would it work to try slowly increasing chair time every few days? Like maybe start with ten minutes for a few days, then move up to 15 minutes , then 20, then 30 and so on. And write it down in a book or on a chart WITH GOLD STARS MAYBE :stars: :stars: :stars: :slightly_smiling_face: It might engage her more in the process of her recovery. :heart:Jeanne

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Shwmae Mike, I can only speak from my experience but I spent the better half a year supine. I did exercises on the side of the bed, and next to the bed. Things like leg lifts, arm rotations, neck rotations. I got up to use the loo and eat. I found that I was only really comfortable lying down but I was aware that I needed to avoid inertia, hence the exercises. Your wife’s brain is still in self-repair plasticity mode, it does need sleep and rest. Each survivor will have their own preferred pace, I would engage with her needs but be aware of any slips in mood as that is a different reason to bed down.

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Perhaps the Occupational Therapy service could advise on more comfortable chair and/or wheel chair for your wife - and maybe even help you source them? OTs were a real practical help for my husband who is similarly affected by his stroke - but maybe that is another postcode lottery??

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Hi Jane, yeah great, thank you… :slightly_smiling_face:

Hi Jeanne, yeah thank you, I love the idea of increasing the time spent out of bed and in her chair over time, that is a great idea, that sounds doable, plus she will feel she is improving without being under pressure etc, great advice thank you :heart: Mike.

Hi you need to talk to a stroke team to see the best way to help your wife talk to u GP to see if your wife can be referred to one. Recovery is a long journey and being in pain makes it a lot harder, however staying in bed will make recovery harder canyour gp refer you to a pain management centre hope you both get the help you need with kind regards des

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