End of Tether

[Practice]

I have been looking after my husband single handedly for the past five to six years since his diagnosis. I retired four years ago and since then have looked after him with very little support. He is now getting more and more confused and going out walking several times a day. If I am not there when he gets back he gets very upset and phones a relative who immediately phones me. If he goes out after I go out he does not lock or sometimes even close the door. If I feel unwell and go to lie down he goes to his sister and tells her he doesn't know where I am. She phones me and I have no choice but to get up and carry on. It is getting to the stage that I cannot go out without him and cant even get time to myself for a shower without being phoned or interrupted. He failed his driving assessment several months ago but today got his hands on the car keys and took the car when I was in the shower.

My CPN made a referral to social work and they visited today but he absolutely refused to consider any respite for me or even to go for any day care. I now feels that the only way I can get any respite is for him to be admitted to hospital for assessment. It is very likely that he will have to be detained as he will not go voluntarily. I do not want to do this but cant see any other way. Any advice would be appreciated.

 

[HillyBilly]

Your poor thing - you certainly can't go on like this.
Your husband may not "want" respite or day care but I don't think anybody ever really does. In this case, it's not about him, it's about you. You desperately need a break and a care plan in place - for yourself. I don't know or need to know what your financial situation is, but could you employ agency carers (if social services carers aren't on offer - have you had a Carer's Assessment?) to give you a break during the day. Your husband may not like it but if they're dementia-trained professionals they should be able to "manage" him - even accompany him safely on walks, and back again. Is live-in care of some sort a possibility?
Have you been to talk to your own GP about your situation?
I know others who have been in similar situations to you will be able to offer you advice on how to get the ball rolling to get some support.

 

[JigJog]

Hi Practice,

I think HillyBilly has some great ideas there.

I am in a very similar situation with my OH and I am no longer able to leave him alone. We are self funding and I started bringing in agency Carers as companions to walk with him, stop for a coffee etc. It had to be carefully handled at first but I managed it. It was a case of finding something he really enjoyed doing or somewhere he really wanted to go and then suggesting he went with the carer, as I was 'unwell' and couldn't take him.

I told a good few white lies, saying I was too unwell to take him, before he really decided he liked going out with the carer. Now he loves it and I get a 3 hour break on one day and 5 hour break on another. I feel so much better for it, believe me.

Today, I've been trying to arrange respite. OH is young and so most places are not appropriate as many are so much older and less active. I have managed to arrange live in care through the same agency. Initially I'm just going to have 24 hours away each month. I'll then build this up so that I can have a week away.

The good thing about live in care is that I can book specific dates and so I can book a hotel or holiday. Respite in the care homes around here is not bookable for specific dates and you just have to wait until they have a bed free. This makes booking a holiday difficult.

This time last year I didn't think I would ever be able to get a break at all but I'm getting there. I do feel so much better and a lot of the negative feelings that we're building up have gone.
Good luck!
JigJog x

 

[optocarol]

Have to agree with the others - you must find some way. I wouldn't ask what the person with dementia would like or accept, just tell them someone's coming to do whatever sounds plausible. Or say you've met someone (anywhere possible) and they're coming for a coffee and go from there, gradually if necessary.

Hope I'm putting this clearly, but if you collapse then what? I went to a talk yesterday by a person from Alz Soc and one thing really struck me, though I have read this kind of statistic before, which was 60% of carers die before the person they're looking after.

Please try to get some help.