Is this the end?

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I obviously need to speak to health professionals but would appreciate hearing about anyone's similar experience.

My 95 year old mother with (mild) Altzimers is living at home. She's recently been in hospital which she hated after a couple of falls (more slumps really, so just bruising).

Her appetite is v poor ( yesterday - half slice toast, bite of egg sandwich but some sweet pudding, eaten at a couple of sittings) and 2 cups of tea (neither finished).

She's sleepy, dozing through the day while watching TV (she loves this).
Google suggests that her body is slowing down and this is a normal end of life progression.

Has anyone else experienced similar, and how long did this phase take. Trying to work out best way to care for her (I'm staying with her ATM). She needs help dressing, washing etc, so looking for support, but really needs to be 24/7 I think, so wondering if I move her or just stay put and struggle on.

Sorry, I think it's impossible to say. :( I think they say if noticeable decline is measured in years you have years, if they are declining month on month you have months, if it's weekly you
have weeks etc.

Some people seem to survive for a long time on not very much. :(
I'm so sorry you are in this situation. :(

Thanks, that month/week thing sounds sensible, I'd not heard that before.

My DGF would tell me he was eating but was always cold and wore many layers of clothes. So I didn’t realise how thin he was getting underneath - he had barely been eating at all. The dementia diagnosis helped get a lot more care involved, but it was a whirlwind from there and he passed away only months later. He took no pleasure from food and asked for hot drinks he’d never touch. I wish I’d seen this for what it was, and got a grip of his care much earlier but I was just in denial, I suppose.

He was getting infections all the time in the end and I think chronic delirium in the last few weeks. Hospital stays I think just helped see him off, as the care was dreadful. Still, Dementia was a secondary cause of death, to my surprise. The first was old age/ frailty.

I hope your mum stays well. Is she on Ensures or anything like that to keep her strength up? Has a social worker assessed her care needs?

Thanks, a social worker has been assigned, has assessed needs and is arranging carers, but struggling to find anyone ATM. I'll look into Ensures. Sounds like we're on a similar track as you, she feels cold and leaves hot drinks.

Thanks again for sharing your experience.

If def a decline but doesn’t necessarily mean the end
an elderly person who is barely active on mobile will survive on very few calories

avoiding dehydration is the big thing

Thanks, trying to tempt her with drinks and got some sweets that are mostly water, but she's not interested.

It sounds like months rather than weeks at this stage but definitely a decline which can often be the case after a hospital stay etc.
She may sleep more and eat less and this will just increase/decrease gradually until she doesn’t eat much at all and sleeps most of the day. I would get a GP appt though and ask if this is likely to be end stage dementia and could they consider palliative just in case prescribing so should she become agitated or nauseous you have medications at the ready. You may find she begins to not be able to swallow so a medication review would be a good idea. Are there some preventative tablets she could actually come off now? Get her assessed for a care package as you can’t do this alone. If her mobility declines it is sad but often means they’re safer as they can’t wander and fall. Bless.

My dad was placed on the end of life pathway in similar circumstances. He survived for over a year.

Frailty is a horrible thing to witness and I think very misunderstood by people who haven't experienced it.

Is your mum mobile within the home at all? If not you may need to get an OT referral so they can put a hospital bed and airflow mattress in at some point.

With dementia the person can forget if they have eaten or not try lots of snacks and water filled foods like melon and jelly. When I looked after these patients I always thought that the end wasn’t too far off when they started talking about their mum and asking where she was.

I'm sorry, this sounds sad. It's a good idea maybe for the GP to see her, if they haven't already. Firstly to have a think about anything reversible, also if she does die, they have to have seen her reasonably recently to give death certificate. Sorry you are going through this.

Maybe try Fortisip, or similar high calorie drinks? Just to say with regard to moving - of course you must do as your and her circumstances dictate, and there should be no guilt involved, but if it’s at all possible for her to stay put, it will probably be the most comforting thing for her to be able to remain in familiar surroundings, however long she may have left to her. Not always possible, I know…Sorry you and she are going through this.

Thanks everyone for taking the time to reply, you've given me a better perspective. We'll be getting support at home shortly and you've helped me think more clearly before my discussion with the GP.

Thanks, some good practical advice

Another thing to think about (I did some training yesterday) is to ask about having ReSPECT plan in case stating her care preferences going forward.

It can be changed at any time if needs be but might be useful (it's not just a DNAR).

https://www.resus.org.uk/respect/respect-healthcare-professionals

If you mean by 'moving' her you would be considering a care home, she will receive quite a lot of nutritional support there. They will put her on those fortified drinks, weigh her a lot and every aspect of her health will be very closely monitored, and she may live for years rather than months.

It's up to you, and to her, whether you think that is worth it. Facilitating a gentle decline in the comfort and familiar surroundings of her own home seems more compassionate to me. However, if she is alone for long periods of time, further falls and horrible hospital admissions are almost inevitable. It's a very hard choice to make, OP. I take it you're not in a position to be able to live there with her?