Happy New Year to all my fellow carers.
My wife had a serious stroke in late May. While hospitalised she made excellent progress both mentally (via speech therapy) and physically. When I brought her home, she was negotiating our 16 steps, venturing out with a walker and continuing to improve on the speech front.
Then, she was struck down with a particularly nasty digestive infection—back in hospital for three weeks with little or no mobility required and, of course, her muscles atrophied.
She’s now home again and I can’t get her motivated. Therapists are visiting weekly and she responds to them well. I’ve brought on a private SLT to supplement the NHS support and there are physio and occupational therapists as well. Her speech is coming along, but I’m concerned about her mobility. When therapists are with her she is enthusiastic, cooperative and making good progress. They give her ‘homework’ which she promises to do, but when they’ve gone, she’s content to languish in bed with me assisting when she needs to go to the loo (where she is perfectly capable of showering, grooming, etc). If I suggest doing her homework, she begs off and says she “wants to do it when SHE wants to do it.” Fair enough, but she never initiates it and thinks I’m controlling if I suggest any activity. Consequently, between weekly therapist visits, she’s going nowhere.
This is such a shame—I’ve been made aware of groups which she would enjoy, but I’ve got to get her mobile enough to attend and I’m running out of ideas.
Thanks for any suggestions
Elaine’s 74, very sociable and life of the party pre-stroke. Articulate, intelligent and very precise. I wrote a memoir a couple years ago and she edited it. When the publisher forwarded it to his own editor, he had nothing to add.
Along with the intelligence comes a fierce independence and I’m afraid, stubbornness. She holds me totally responsible for the MDT decision to refer her to rehab (which she hated) after her stroke (because I concurred-she wasn’t ready to come home yet). I think that’s why she thinks I’m trying to control her.
Please let me know if you’d like other information.
Do you think she would respond better to a paid carer supporting her with her exercises? The lady who supports S before and after his day service on the days I work, also works for an agency and one of the clients she visits - she assists with her physio programme.
Or, is there a family member or friend who could motivate her?
I think with these sorts of things it helps to have it as part of the daily routine, though it sounds as if she is resisting that.
My other suggestion is that you find some articles/ research papers about regaining mobility after a stroke. This approach might appeal to her intellect and mean her brain overrides her reluctance.
Stroke can affect cognitive abilities as well as physical abilities, but the comments you’ve made suggest that she was wanting to get away from hospitals and hide at home. The big issue with stroke patients is that they often “don’t want to be seen like this”. Which is why you see so few people with stroke at the supermarkets, for example, while there are something like 1,300,000 stroke survivors out there - about 1.8% of the population, give or take.
The likelihood is that - about 7-8 months in - she’s going through depression. Is there a local stroke group in your area? Some of them now meet via zoom, at least some of the time, and that may be the way to start getting your wife interested in doing her “homework” and getting out and about.
Melly & Charles
Thanks for your comments. I’ll try to respond to both. A paid therapist may help, but right now she moans about the number of NHS therapy visits she has weekly (normally 1 each speech, physio and occupational + 1 paid SLT). This is ironic since she enjoys each of these visits immensely! She also thinks the speech therapy is ‘most important’ and the therapists and I can’t seem to convince her she can easily do all three simultaneously.
We have an excellent after stroke group in Bristol and they’ve given us all sorts of options. She’s a technophobe but I’ll certainly try to get her into a Zoom group until I can get her physically up and out to one of the local stroke cafes etc. I think your comment on depression is spot on although I’m amazed (and elated) at her exuberance whenever she meets someone. Part of the problem is probably me–I’m hopeless at small talk while she can chat for Britain (and has no reluctance to do so with a visitor or therapist.) She accepts her Aphasia and always apologizes for her speech when meeting someone new. Unfortunately, we have few friends in the area so this doesn’t happen as often as I would like. Social stroke groups are the answer, I think-it’s just a matter of getting her strong enough to attend.
Have you discussed getting to stroke group with your wife and her therapists? Also with the group? There might be options such as community transport etc The Red Cross also loan equipment such as wheelchairs if it’s too far.
I’m wondering if your wife finds her aphasia more frustrating than you realise and that’s why she is so keen to focus on her speech.
As for your problem with small talk, you can always listen and then ask a few questions. There is probably a carers group too and you’ll have questions to ask and advice to share I’m sure.
Yes, we had an assessment visit with our Bristol After Stroke coordinator a couple weeks ago. She presented a number of options and Elaine was receptive. I can take her wherever she needs to go so transport is not an issue.
As soon as Elaine’s ready, we’ll decide what she’d like to attend. My only concern is that she’ll procrastinate and we’ll miss the opportunities. Hence the need for motivation!
Steve, one thing I’ve learnt about depression is that it gets filed away when others arrive so that they don’t suspect that everything is not quite hunky dory…and the moment the door closes, the depression’s back out of the filing cabinet.
Yep, I’m beginning to understand that concept as well.