What next - bridging the gap......

[Triffid]

After advice again!
Dad has Alzheimer's and vascular dementia. He's been managing with a live in carer who looks after him from when he gets up about 9:30 til he goes to bed at about 10:00 (although he is quite unsteady, and gets up once or twice he generally manages himself at night. They have a 2hr break in the afternoon and leave him a message on a white board saying that they are in the house and will be back at 4:00. They have also left him a note next to his chair in the sitting room with details of a film he might like to watch.

This has worked fine until the last couple of days when he has gone to sleep and woken up distressed that he cannot find anyone in the house. They have come down to find him sitting in the dark in the sitting room with tv, fire and lights switched off and very upset. He hasnt remembered to read the white boards :-( I live 200 miles away so cant go in to cover that time although my sister and I are usually there for a couple of days each week- we'd like to keep him at home if possible, at least until covid is under control and we can visit where ever he ends up

Any suggestions on

1. what we can do right now to help this? (gadgets, strategies' or next steps). I'm going to try ringing him as he has a phone next to his chair and will usually answer.
2. what we should be planning/putting in place as his condition deteriorates? He doesn't want to go into a care home "and sit in rows watching the telly" but he really does need constant company and increasing assistance (i.e. he forgets where the bathroom is but can find it when he goes to look)

Thanks!

 

[Cat27]

Is he switching everything off himself or is he incapable of switching them on?

 

[silkiest]

Hi @Triffid, your father seems as if you need to start considering a care home. I have read so many threads on here where the PWD gets frightened , confused and lonely when there is nobody around and the only help seems to be 24 hour care. If this is a sudden change in your dad it may be a temporary decline caused by an infection so it could be worth getting him checked by his GP.
We investigated a lot of local care homes last year when MIL started to deteriorate more. Of course there was a couple that I would never consider but we were very impressed with a lot of them. Most of the homes had an activity coordinator and had a program of weekly activities for residents. A couple of the larger ones even had rooms set up as hair salons and cafe's to give the residents a change of scenery. I would recommend visiting a few locally, you may be pleasantly surprised.

 

[Rosettastone57]

There comes a point where the person with dementia's needs become so great that they outweigh what they or family members want to happen. I think you are about to reach that point. If you are saying your father needs someone with him all the time, then you should be thinking a care home. Of course he doesn't want to go into a home, but that's what he needs. Or you organise further carers to cover the 2 hour breaks. It doesn't matter how many notes , reminders are left, he's got to the stage where he ignores them and needs constant reassurance. That's not going to change. You might find, as others have found on this forum, that your father will thrive in a care home setting

 

[Triffid]

Thanks, that was sort of my thinking too. He’s just getting g over an infection so that may have been part of the problem, but yes, I think we are getting to that stage.
My sisters’ very against the idea of him going into a hone, particularly at the moment when we can’t visit and many activities in are shut down. I’m hoping he can manage for a little while longer until things improve. It’s really nice still being able to spend longish visits with him,
It would be complicated enough without COVID!

 

[Triffid]

@Cat27 he switches everything off when he leaves the room (always has done!). I think that he is too miserable to turn tg back on when he thinks he’s been abandoned. It’s been ok for the last couple of days, so fingers crossed....

 

[Triffid]

(Sorry for delay in replying but been buried in what I’m learning to call “dad stuff”). The other challenge we have is my sister and I live 200 miles away from dad, I’m renting and trying to buy a house so not sure where I’ll be in 6 months and dad doesn’t really have any friends, so it may make sense to move him down near my sister...:

 

[t0ria]

He sounds very similar to my dad. He had live in care for a couple of years, the same as yours with a 2 hour break. He couldn't cope with being on his own during the break and got extremely anxious, and we worried about him getting up and getting lost of falling. I ended up paying a bit more for cover over the 2 hours. Actually it worked out that the carer just did the full shift and got paid a bit extra for not having a break, which was fine to start with but as he got more and more needy it was just too much for them and they were exhausted.
He went into a home in the summer and actually he's doing really well. He still needs constant reassurance but he's so much more settled and he's sleeping through the night which he's not done in years.