My husband (now bed bound) is the most obstinate man ever when it comes to his care.
Between me and his dad, we deal with ALL his medical needs. Husband didn’t want the carers… he thinks me and his dad can manage and are just being ‘lazy’!!! But we told him carers were needed, and he actually now accepts them, indeed gets on well with his regular one.
Same with the OT - he didn’t want bed rails, or a hoist, or a ‘hospital bed’. Me and his dad got the OT in - he refused to engage with her, so me and his dad sorted out what was needed - they are all in place, and he is much more comfortable (and safer) for it. Although he doesn’t “want” any of the equipment, he will accept it when it’s here.
Maybe you can ring Social Services - explain the position. My husband has gone as far as telling our OT to “f*** off out of my house”, but she knows he rages against things and she accepts/ignores. Please don’t think we bully my husband - the fact is that he has a hard time accepting his level of disability - hence he doesn’t see the need for help - until it is actually there.
As for the GP… our GP talks to me directly about his medication (regular or changes to), I attend GP appointments instaed of my husband where he gives me advice, prescriptions etc, in fact the neurologist appointment a few weeks ago was just the neuro, me and his dad. I’m not sure why you’re GP is telling you he cannot discuss your mother’s condition - I know there is patient confidentiality, but if you’re asking for advise and help, surely they have a duty to do this? If your mother is bed bound, surely it is a better option for you to attend a GP appointment than it be a house call? Maybe it makes a difference that I’m officially logged with the GP as his carer - maybe you can officially notify as your mother’s and see if that makes a difference to their attitude?
As for your statement about ‘normal’… what’s normal in MS!!! My husband lost the ability to weight bear in March, and since the summer has spent all but 20mins or so in bed. He draws the curtains because of his sensitivity to light. He is asleep most of the day. If I go in there during the day, he will tell me to go away more often than not because he wants to sleep. His way of dealing with things. Maybe not what I would choose - but he seems to have lost the will to fight.
Perhaps he summed it up for me last night when he was waiting to go into the hospital for another urine infection. He didn’t want to go and told me to cancel the ambulance. As it had taken nearly 2 hours to pursuade him to go in the first place I refused. (OK I didn’t, after 3 hours sleep the night before I shouted at him) “you know you have to go in - you’re dehydrated and have an infection and it could bl**dy kill you if you don’t. Is that what you want?”. His reply? “Yes. I’ve just had enough”
Sad, isn’t it? He’s 43 - we’ve got kids of 5 and 8. Maybe everyone has their cut off when enough’s enough - maybe he’s reached his, and your mum’s reached hers.
Hope I’ve not offended you with anything. I hope you get the help you’re after - but I think you and I have to understand that we’re not the ones living with the pain, and the knowledge that every day we may be worse. We live with the pain of watching them - but it’s their choice.