Adult Social Care assessment

[LouLou]

My husband has vascular dementia and prostate cancer. The prostate cancer has affected his bladder and bowel frequency. Night times are increasingly becoming more difficult as he gets up for the toilet on average every three hours. One night it was ten times. Unless I also get up when he does he has accidents and needs clean pyjamas so it's much easier for me to be with him.

As I care for him during the daytime too I am exhausted. I've contacted Adult Social Care for an assessment and was told someone could come to the house in the night, wake him up and take him to the toilet. When they come it wouldn't necessarily be when he needed to "go". The dog would wake up, he loves a good bark, I'd wake up as I'm a light sleeper now and I can't see this would be of benefit to us.

Does anyone have a similar experience with night time toileting? What help from ASC would be best for us? I manage ok with his personal care during the day.

Any thoughts and advice appreciated.

Izzy.

[bowlingbun]

Welcome to the forum. This must be utterly exhausting.

First stop should be your "Continence Nurse" from the doctor's surgery.
Social Services idea is clearly a non starter!!!!

Are you getting any support from the local hospice? My dad, had prostate cancer, our local hospice were amazing, they had a day centre and all sorts of services as he slowly got worse.
Have you been in touch with the Prostate Cancer charity? They were very helpful to me when dad was clearly very ill and no one would talk to me properly about life expectancy. I shared the same surgery as my parents and they knew that mum was very disabled and I'd end up caring for her when I already had a son with severe learning difficulties.
Is your husband claiming Attendance Allowance, if over 65, or PIP if he's younger?
Has anyone told you that he is EXEMPT from Council Tax since the diagnosis of dementia, as that counts as a "severe mental impairment".
Have you thought ahead to the time when your husband is nearing the end?
Do you want help at home, or nursing care? The surgery should be talking to you about this sort of thing.
There is also something called NHS Continuing Healthcare, free care either at home or in a nursing home. Your GP should know about this and how to apply, sadly, it's a postcode lottery.

[LouLou]

Thank you for telling me about Prostate Cancer UK. Their website looks useful and there's the opportunity to chat with a nurse. I've been so hung up about the dementia that I didn't think to look there.

He's claiming Attendance Allowance, I claim Carers Allowance and I recently found out about reduced Council Tax.

His doctor was going to ask the surgery's care co-ordinator to contact me. Not heard from her and I must chase that up. I'm usually well organised but it's so easy to procrastinate when tired.

[bowlingbun]

Tiredness is my biggest enemy, I had about 3 hours sleep last night. Just about enough energy to do a bit or ironing, much easier just sat at the keyboard!