Advice please

[MReader]

My husband has mixed dementia (following a stroke 5 years ago) and advanced prostate cancer (now in his bones).
The last 5 years have been challenging - as is caring for anyone with dementia - but the last 4 months have been particularly so as his dementia has increased quite alarmingly and his cancer has taken hold.
He sleeps about 20 hours a day & when he is up, he eats & dozes on the sofa. He is unable to follow the TV or understand the paper, and is having trouble forming sentences around ideas.
He has very vivid frightening dreams & often does not know where he is when he wakes up. He is constantly asking about his mother, father & brother - they all died many years ago.
His hospice nurse says he will probably not see the spring.
He stopped going to day care back in September as it was too much for him, and since then I have 3 hours a week sitting service from Crossroads.
Over Christmas I realised just how much I was missing out on - having to cancel or refuse many invitations - and, although I know the spring is not far away, I know I don't want to sit in doors until then. I go for days without seeing anyone - just the TV for company.
I feel very torn between caring for him until the end or him going into care & me having a life again.
Is this selfish or just natural - any suggestions please. I try to rationalise but get too muddled & emotional - people who are neutral but have an understanding of dementia dominated life (yourselves out there) have a better perspective.
Advice please

 

[Grannie G]

No one can advise you MReader, it`s too big a responsibility, we can only tell you or our experiences and how we feel.

If my husband had been able to keep his mobility I hope I would have kept him at home. It was my dearest wish to keep him at home but his loss of mobility stumped me. The paramedics were called out every night to lift him off the floor and the SW and CPN decided on those grounds they would no longer be able to support the care package I had.

The biggest problem was he didn`t realise he was losing his mobility so kept trying to stand or walk and so kept sliding to the floor.

I will say I had two hours care daily and eventually an additional half hour night and morning for help with dressing and undressing. In this current financial climate I doubt i would get this now . Because of this I wasn`t quite as housebound as I might have been, however even with this wonderful care package we were still housebound 21 hours every day.

My personal feeling was keeping him at home was the last thing I could do for him but sadly it didn`t work out that way.

 

[Oxy]

I'm very sorry to read about your so difficult situation. Very difficult to give advice. I don't want you to regret a decision you made afterwards. However 'spring could be autumn' and most importantly you need to get out more for your wellbeing. If you can afford it, could you not get a sitter in for extra hours? Is your area served by admiral nurses for advice? If not, you could ask them for advice on their helpline. Marie Curie-could they help. Age concern sitters? Just little thoughts that may give you advice on getting extra time to yourself. If the situation is untenable for you, a nursing home or would you get respite through a local hospice so you can just be you for a couple of weeks to recharge your batteries. I do hope you get more regular 'time off ' from the treadmill.

 

[lin1]

Oh Mreader . Though it's better than nothing 3 hours a week from Crossroads is nowhere near enough, if you can arrange /afford more please do.

My mum who had mixed Dementia started to have regular respite , one week every six weeks at our local Hospice , the care mum received there was wonderful, mum actually came home looking better than she went in.
Mum was the first person they had who had Dementia .
Mum was unable to get out of bed or walk unaided, couldn't make her needs known except by crying or moaning or feed herself .

Maybe have a chat with the Hospice Nurse to see if Hospice respite would be suitable for your husband. I'm thinking if he is quite mobile it may not be

A long time ago I learned , it was vital to have proper regular breaks , so you don't get so worn down that you can no longer cope.

If the Hospice feels your Husband is not suitable for Hospice respite at the moment then do look into care/nursing home respite.