Hello Sharon - I hope by being able to put into words how you are feeling and sharing it with us, it has helped you in some way. By getting it out of your system, perhaps you can now start thinking about what sort of help would benefit you and how you can go about getting it.
There is a lot going in here and maybe it can be broken down into specific areas that can be targeted for help.
It is very disappointing and sad to read the lack of support and feedback you have had (or not) from the GP, physio etc. That is not to say you should give up - you can ask for referrals, or you can make a formal complaint if you feel you are not getting the help and care you need.
I cannot go into details here since I don’t know enough about your specific details.
What I will say to you and you may read into this however you want to, help is available but sometimes you have to knock on the door at little harder and you may need to be thick skinned.
I am a carer for my Mum and she has survived a massive stroke from which she was not expected to live. Due to the severity of the stroke, she received very little, almost no help of any note - she was 89 when she had the stroke and so this added to the discrimination.
At the point of discharge, she had no physio and no ongoing rehab. She was discharged into a home that was not ready for someone in her condition and she needed double-up (2-carers) to help her. She had that 4x a day. She was trapped in a room looking at 4 walls for the best part of a year as she was bed bound and she could not be easily wheeled out. I could go on - Covid kicked in and added further to the woes as this meant even less support …
Despite this, and six years on, she never gave up and kept working with whatever small help she had to build up her strength and kept proving she was deserving of support. This helped to get her some support and home adaptations to make life more bearable. She was able to sit out on the riser/recliner chair having been hoisted out and she was able to be wheeled out onto the decking in the back garden. All these things were small things she did and continues to do over time to live the best life she can. Actually, you might imagine from what I have said, this is not all that great - she still need 2 carer support, she still is nil-by-mouth and fed through a PEG tube and she still cannot stand.
But she has not given up and she continues to fight.
Yes, she too gets annoyed with her carers from time to time and carers get annoyed with her from time to time. But we all understand the situation and we make the best of it.
Whenever we feel we have some progress to share, we do that and we seek more support - we don’t always get it. Physios and OT’s etc aren’t really able to or interested in helping someone who is in their 90s, unable to stand up and has limited mobility and no speech (aphasia post-stroke).
But fight on she does. In doing so, she gets a little kick out of it every now and then and she lets us know it by giving us the most wonderful smile and “sings” us a ditty. We let her know we love her too and so life goes on …
I hope you will be feeling better and hope you will get the help you seek.
As has been mentioned by previous posters, you can get support (see note from @Anna_Moderator above) and join in on activities etc.
I would also encourage you to sit with your husband and talk things through. It may help you both to get things out in the open. It is tough being a stroke survivor and a carer for a stroke survivor but it is not impossible.
I wish you all the best.
Namaste|
