Considering how to continue caring...
I don't use this site much but your post caught my eye as I'm in a similar situation. My husband has Lewy Body dementia and Parkinsons but I am not coping at the moment. He is not a difficult person so I feel very guilty for not coping. I have carers 5 mornings to get him up, he then sleeps a lots. It is like is neither alive or dead - what a terrible thing to say... But this is all so sad and depressing and frustrating, I want someone to take the whole situation away. Sorry this is not coming out like I wanted and could become a rant so I will stop now. I do understand Marylil52. You're not good to anyone if you crack...
I don't use this site much but your post caught my eye as I'm in a similar situation. My husband has Lewy Body dementia and Parkinsons but I am not coping at the moment. He is not a difficult person so I feel very guilty for not coping. I have carers 5 mornings to get him up, he then sleeps a lots. It is like is neither alive or dead - what a terrible thing to say... But this is all so sad and depressing and frustrating, I want someone to take the whole situation away. Sorry this is not coming out like I wanted and could become a rant so I will stop now. I do understand Marylil52. You're not good to anyone if you crack...
I told him when we first knew that something was badly wrong that I would look after him for as long as I possibly could. We agreed that if things became too difficult for me, we would sort out professional care, most likely in a care home.
It has been coming for a long time, D's Lewy Body Dementia, and 20 months ago I left work to care for him full time. The last few months have been incredibly difficult (though I know others have things so much harder - at least we have a nice house, enough money and good friends, even if his children are a lot less engaged than I would like). D is very weak, though still mobile, but increasingly confused and deluded. Often he doesn't know where he is ("I want to go home" he says heartbreakingly) or who I am. His sisters and our friends say it's time he went into a home - I found a nice one not far away, which could take him; and I know that I'm getting close to cracking. I cry a lot and am horribly short tempered with D, especially when he refuses to let his carer wash and dress him (more and more often now) and insists that I do it. I'm pretty much under house arrest at home except for the few hours twice a week when I can get out to shop etc, with a sitter at home. I think I may be getting a bit bonkers. I'm certainly unreasonably angry a lot of the time.
BUT.....I simply cannot bear the idea of abandoning D in a care home, even one that I can visit every day. If I were advising anyone else, I would tell them all the things our friends tell me. But I can't do it. I said to D today, at the end of my tether after his obstructiveness made me miss a doctor's appointment, that we couldn't go on like this and we'd have to find new accommodation for him. He looked utterly stricken and said "but you promised to look after me". What am I to do???? He was and is my darling. I simply don't think I could live with myself if I left him.
I recently bought a flat very close by (a few doors up) as my pension income. Should I move D there and find a carer more or less full time for him, so that I can be near and help him (maybe do 9 days carer and 5 days me every fortnight?). Would that be less cruel than leaving him in a care home? It's a lovely sunny, warm flat, and near friends and family. I know that, with DLB, D will need nursing care in due course. But might this be a good interim measure?
please, what is others' experience? Does this idea make any sense?