Very Strange Place

[Jennyc]

Early January I got ill, chest infection, flu, and couldn't manage care for husband diagnosed with Alzheimer's six years earlier - always managed up till now. He was declining, could no longer feed himself, going downhill but we were still coping. Lovely daughter arranged respite care via social services from beginning of February. For the last two weeks I've recovered and am now visiting hospital 20 miles away daily whilst husband is on fast track end of life NHS continuing healthcare, as they look for a suitable nursing home.

I find it extraordinary how fast this has happened, he refused food or drink in respite care home, then had a seizure and was ambulanced into hospital. Pulled drip out, aggressive, distressed. I feel so guilty that I couldn't keep caring for him.

Is this what happens? Suddenly everything changes? I watch him disappear daily. The hardest thing is that I had reached the end of my tether, many, many years of unhappy marriage and wish to escape, Alzheimers taking over and my wish for it all to be somehow taken away from me, and now it seems to be happening, I feel terrible.

 

[HillyBilly]

You were obviously doing a brilliant job of caring for your husband. I bet it really took it out of you which is why you ended up ill yourself.
Maybe, in some way, things have worked out for the best? I don't mean that in a callous way.
Don't feel guilty - you're still doing your bit. I hope that a suitable NH is found soon and you can get into some sort of new routine and role.
Don't wear yourself out again x

 

[LadyA]

JennyC, I don't mean to sound callous either, but right from when your husband got dementia, it was only going one way. Even had you not become ill - as so many carers do, from sheer exhaustion and stress- this would have come eventually. Sometimes, infections take hold or a sudden stroke or (as in your husband's case) a seizure, and with what seems like unimaginable haste, we are suddenly at end of life stage.

It is not your fault! It is just the way that dementia goes sometimes. I do hope a suitable nursing home can be found quickly. But you have nothing to feel terrible about. We've all been in the position of wishing the whole scenario of the exhausting and soul-destroying aspects of caring could be taken away. That's not at all the same thing as wishing ill on the person we are caring for! Because if carers got more support, more help and could access more social and community supports so they could have regular rest and breaks - then they wouldn't reach that breaking point, would they?

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[Jinx]

Totally agree with LadyA, sadly dementia is a one way road. My husband went downhill very quickly, couldn't/wouldn't eat, endless infections and it all takes its toll. You're still caring by visiting and supporting him but others are taking the strain (and none of them have to do it 24/7) no guilt required you're doing your best. xxx


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[Spamar]

Like Jinx, my husband went downhill very quickly at the end, even the care home staff were surprised!
My thoughts are with you.