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Dementia and Alzheimer's

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Original poster

Feeling like we are limbo

2 replies

Imamumgetmeoutofhere · 27/02/2026 20:53

Dementia is so bloody cruel.

Ive posted here before about my father in law. He’s 83 and has been in a care home for 2 years now due to his dementia becoming unmanageable.

He’s had a recent decline to the point of not being able to eat at all, and barely drinking, having to have thickener in water as he cannot drink water as it just runs out of his mouth. He’s lost so much weight he’s practically skin and bone and moans all the time and we think he is in pain as he is bed bound.

He’s also had recurrent chest infections, and is not barely conscious most of the time. He’s on antibiotics (again) but we’ve decided not go for hospital admission as it would be incredibly stressful for him, not to mention painful and could potentially end up with him just in a corridor somewhere as it would be an A&E admission and then no guarantee how they would get him back to the care home.

We've been told he is end of life, not imminently but could be a matter of days or weeks. We've been told this before though (probably about 3 or 4 times since September) and he’s rallied and then been a bit better.

What do you do when you are just waiting for something to happen? It feels like we are stuck in limbo, grieving him before he’s gone due to the dementia but knowing the actual end isn’t far away.

Everytime the phone rings I feel sick incase it’s the care home, incase it’s the end, which then has me thinking it might be better for him to go in his sleep but then feeling guilty at thinking that.

I feel so worried about my husband and the stress it is causing him, especially as he is one of the LPA and the care home ask him lots of questions, about my mother in law about what is to come, about the stress that she’s already been through. About my children who are going to lose their grandad.

I just hate this whole situation. It’s heartbreaking, stressful and just fucking awful. I hate Alzheimer’s and I feel so sorry for everyone else who has been there before us, for who are going through it.

Sorry for rambling, I can’t really talk to my husband as he’s so stressed at the moment.

OP posts:
helpnavigateteens · 27/02/2026 21:37

I don’t really know what to say other than to offer a virtual hug. I just lost my dad to Alzheimer’s and I recognise your description of grieving before you’ve lost him, and feeling in limbo. We were lucky in that he was only in a care home a short time before he died. He also just stopped eating actual food, and was on Complan and similar, for maybe a month before he died. Like you we instructed no hospital admission and it was definitely the right decision.

I hope for your father-in-law’s sake and for all the family the end comes peacefully. Take care x

FunJadePlayer · 07/03/2026 20:08

Imamumgetmeoutofhere · 27/02/2026 20:53

Dementia is so bloody cruel.

Ive posted here before about my father in law. He’s 83 and has been in a care home for 2 years now due to his dementia becoming unmanageable.

He’s had a recent decline to the point of not being able to eat at all, and barely drinking, having to have thickener in water as he cannot drink water as it just runs out of his mouth. He’s lost so much weight he’s practically skin and bone and moans all the time and we think he is in pain as he is bed bound.

He’s also had recurrent chest infections, and is not barely conscious most of the time. He’s on antibiotics (again) but we’ve decided not go for hospital admission as it would be incredibly stressful for him, not to mention painful and could potentially end up with him just in a corridor somewhere as it would be an A&E admission and then no guarantee how they would get him back to the care home.

We've been told he is end of life, not imminently but could be a matter of days or weeks. We've been told this before though (probably about 3 or 4 times since September) and he’s rallied and then been a bit better.

What do you do when you are just waiting for something to happen? It feels like we are stuck in limbo, grieving him before he’s gone due to the dementia but knowing the actual end isn’t far away.

Everytime the phone rings I feel sick incase it’s the care home, incase it’s the end, which then has me thinking it might be better for him to go in his sleep but then feeling guilty at thinking that.

I feel so worried about my husband and the stress it is causing him, especially as he is one of the LPA and the care home ask him lots of questions, about my mother in law about what is to come, about the stress that she’s already been through. About my children who are going to lose their grandad.

I just hate this whole situation. It’s heartbreaking, stressful and just fucking awful. I hate Alzheimer’s and I feel so sorry for everyone else who has been there before us, for who are going through it.

Sorry for rambling, I can’t really talk to my husband as he’s so stressed at the moment.

How is he doing? I didn’t want to read and run. Sending love and hugs

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