Completely overwhelmed and looking for advice

Hi there,

I’m a 31 year old single woman who is pretty much the only family member my 69 year old Dad has in the country. He has primary progressive MS which is progressing very rapidly. I live in a different city and he lives in a first floor flat in Greater Manchester which he can not leave. He can no longer walk, is housebound and increasingly incontinent. He has carers come in twice a day and several neighbours and friends close by who look in on him. Several times he has got stuck in bed or on the floor and ended up being sent to respite care for a few weeks- which he hates. I am trying to get him into an extra care facility in the borough he lives in but so far have had no look. The local council requires you to ‘bid’ on properties every week- so I check the website regularly but there is only facility he is eligible for and so far it has only come up twice and been immediately allocated to someone else. Trying to enquire where he is on the ‘list’ doesn’t get me anywhere. I don’t know if this system is unique to the borough he is in? I’ve spoken to the local MPs caseworker, social workers etc Nobody ever really seems to know what’s going on. I’m told because he has PPMS, he will not be seen by a neurologist again as there is no point and no available treatment. He is not being offered any help for his incontinence, I didn’t even know there was such thing as an incontinence nurse till I came on this board, his MS nurse is basically unreachable and has little of any use to say when she is and he is not getting any physiotherapy. The carers that come to the house are generally very good, thankfully. They noticed he had a bed sore after his last stay in respite. He is quite literally being left to rot and I am unsure what exactly I need to do to get him into one of these elusive extra care facilities. Frankly, I feel like by the time one comes up he will probably have surpassed that level and need to be in a home anyway. His cognition is definitely affected- he talks absolute nonsense out of of nowhere more and more. Gets numbers/words/directions wrong but shouts at me like it is me being ridiculous. I feel very sad about the situation but I have to admit that I cannot bear to spend too much time in his company as I quickly feel like I’m on the verge of a nervous break down myself. I know this is selfish and that many of you on here have given up your life to care for family members. I’m just not willing to make that sacrifice. He is long separated from my mother who is re-married and could care less. And my elder sister is married on a different continent with a child. I am willing to try and move back to Manchester to be closer to him and visit him more for his mental well being. But I am unwilling to become a carer in any physical sense. Just feeling a bit lost and hoping for ANY advice over any of this to be honest. :confused:

whereabouts in greater manchester does your dad live because i’m in bolton and could give you the number of the continence service.

there is a fabulous ms therapy centre in trafford park.

loads of therapies on offer to both the parson with ms and the carer.

don’t compare yourself to what you think others are doing.

pm me if you want any contact details that i access.

in fact i’ll pm you now.

carole x