Hi @Joanne99 ,
Thank you for your response which is very helpful.
Firstly I wish you and your Mum all the best and hope everything goes well with your Mum when she is discharged. I think it is great she is not having to use the catheter as it seems to be one of the most unpleasant things that one might have to use. If your Mum is able to communicate it will help as she can alert when she needs changing or help. Unfortunately, my Mum only makes noises which alerts us that she needs help, but it’s a guessing game as to what she needs help with though we are getting better at pin-pointing the need.
Yes, Mum has carers but post-stroke, all the professionals have been reluctant to do anything positive in terms of help. Their (the professionals) attitude has been containment rather than improvement and rehab. They seem quite “ignorant” (I don’t mean this in a rude sense) about a lot of things that a stroke sufferer needs help with and no one wants to take responsibility. So there are times when we get bounced around between services e.g. GP to DN and DN to GP or GP to social services etc.
Mum is only on a catheter because the immediate post-stroke diagnosis/prognosis was this is an elderly patient with comorbidities and little (I won’t go as far as to say “no chance”, though it felt that way) chance of recovery to any sort of meaningful life. They had essentially assigned her/categorised her to palliative care.
We have had to fight and push so hard for any help we have been given. The default answers are along the lines:
- she is elderly and weak and it would be stressful for her to undergo tests
- she is elderly and this is normal for someone of her age
- she has vascular dementia and her condition is likely to deteriorate or she is deteriorating! On this I have to say as someone, along with other members of my family who has cared for her for nearly 3 years, she is actually improving, not deteriorating!
At the last home visit from the GP which I had to insist on as they wanted to do a tele consultation, she repeated the above despite seeing how much better Mum was looking and despite declaring all her tests are showing there is nothing wrong e.g. bloods, BP, cholesterol, liver etc. all normal, yet she is deteriorating?
In brief she is still with catheter because no one has done the trail without catheter. The GP is not very interested and seems to offer minimal support and is not at all proactive.
After the response to my post, I am pleased to say I have more information and feel I can go to the GP and DN better armed to request a trial without catheter.
The only problem might be that they will point to the fact Mum is still unable to walk as a possible blocker. Mum has not stood up though we transfer her to a recliner chair during the day. She wears incontinence pads as well as catheter.
Thanks for the positive vibes and support from this post.