My Alzheimer's mother has recently started imagining things, does this mean it's entering the middle stage?

[falstaff1980]

Up till a few months ago it was memory lapses and struggles using home appliances, but recently I arrived her at the house to find her looking very stressed and telling me an impossible story about something that I was able to prove to her had not happened. Just this morning she phoned me stressed about me having 'rearranged' a room in her house and she couldn't find some xmas presents she left there - I had moved some furniture that room a month ago, but there were certainly never any xmas presents there (they are all in a different room).

A few days ago I was talking about taking my daughter to the natural history museum, and I asked if she remembered taking me when I was a boy, and she asked "where did you live when you were a boy?", she at least immediately realised what she'd just said and corrected herself (slightly embarrassed) "of course, you were living with me and dad".

I'm about to get quotes on a deferred care annuity for my mother (where you pay a lump sum, and then get care home fees paid for as long as the person lives), I was thinking to defer payments for two years (to get a cheaper quote) on the assumption that she can manage at home with just a single daily care visit for now, but wondering now if I need to plan for full-time care being needed sooner.

That sounds like assuming a lot which is a bit risky. As you can see from many of these threads, things happen to the elderly in the early-middle stages of dementia which accelerate the decline - infections and falls and hospital admissions. I don't really know how care annuities work - who pays the bills if the person needs care earlier than anticipated? It does sound like your mum is getting confused and that's not a good sign if she lives alone. The state-funded care packages aren't very good, the visits are very brief. You may be making a rod for your own back by planning on keeping her living in her home for two years, you may end up dealing with crisis after crisis and running yourself ragged.

Every Alzheimer's diagnosis is different and can take different routes.
No-one can say.
In your shoes, I would look also at Plan B and Plan C and view altogether.
So Plan A was two years' time
Plan B is one year's time
Plan C is a flexible plan which might not have an annuity.
A lot will also depend on DM's physical health and ability to look after herself.
Kindly, she could be away with the fairies but still able to get dressed and make her own meals for a good bit longer. It's just when she starts to leave the gas on and forget to lock the door and become unsafe to live by herself that you need to have a rapid response.

Check the cost of immediate needs rather than deferred annuities. They may be higher, but there's less risk - you're paying for something you know is needed when you need it, rather than something that may not be needed at all or may be needed at the 'wrong' time leaving you a gap to fill.

You need to go with the flow when she thinks she's lost stuff or been somewhere etc. There's no point trying to prove they're wrong, their brain doesn't really work like that anymore. It just stresses them out or upsets them.

TBH I wouldn't bother with the annuity. We had one for my Aunt, we still had to top up and it would have been cheaper overall to just pay care costs from capital.

Generally speaking, it's only when they reach stage 6 that things become unmanageable and that's usually the point at which most people will enter residential care.

Sometimes people with dementia or Alzheimers do not feel hungry or believe they have eaten when they have not. This can lead to imaginary incidents and confusion which is sometimes put down to the disease.

I have no idea if this is true for you but speak from times when investigation showed spoilt and uneaten food with mum explaining what she had cooked and eaten when the oven had been dismantled months before. This coincided with lack of eating and drinking and was a time to review how food was provided and monitored.

Urinary infections can also lead to great confusion.

I would do some investigation first.

If it's a change that has suddenly happened overnight, get checked for a UTI first (water infection).

My MIL was probably not at the middle stage when she started imagining stuff but everyone is different.

Yes I agree about having a UTI checked out. My mother was very similar when she had a UTI but is normally okay.

For MIL when we first realised something was wrong it was quite advanced and she was masking very well. FIL has dementia so she was saying it was all him when in fact she was much worse. We moved them into assisted living last December and it all fell apart. By March she was under DOLS in a dementia care home. It happened so fast. She is imagining things, still knows who we are but is aggressive and has constant falls. It is practically every day. We could not manage her at home even with all the bought in care. I would seriously start looking at dementia care homes nearby. Always get them checked for UTI's first as others have said as a starting point.

A lady I knew was convinced she has been burgled and phoned the police. The reality was she had opened drawers and moved stuff but simply couldn't remember doing it so defaulted to what 'nust' have happened. She had quite severe dementia. Hallucinations are very common with uti or other infections though, so best get that checked

With Alzheimer’s I think buying an annuity is a risk as it can accelerate quite quickly or stay nearly the same for a while.
If she is living at home one care call probably won’t be enough and that is if she accepts the care.
My DM used to barricade the door and not let them in. Then we gave up with the carers and did the care between my sibling and I but she was still literally starving to death and a danger to herself and others.

I don’t think it’s much use really to think about Alzheimer’s in ‘stages’. Everyone is different and it can be stable for a while or accelerate very rapidly at other times.
The key is to try and stay one step ahead. If she has daily care visits, she might start to need more hours of support. But don’t be afraid of care homes. Start researching and find a good one - good doesn’t necessarily mean fancy though! It’s possible to leave it too late and then it’s massively stressful. Sorry you’re having to deal with this. It’s shit

I think there's an argument for people staying where they are but building in more support. Having familiar surroundings and routines helps people to stay orientated. With my father in law he stayed in his flat until he began to become anxious about stuff like locking doors - he was always giving himself food poisoning too because of inability to remember rules in relation to meat and chilcken. Then he went to sheltered accommodation where there was a communal meal - which solved the food poisoning issue. But eventually he was having 'accidents' e.g. incontinence - which was the point at which a care home was needed. Obviously the fees are really high so it makes more sense to pay for carers, apply for Attendance allowance etc - and live with a degree of independence for a longer period, if that's possible.

Thanks all, I have looked into care homes and we have some good ones nearby where my mother already visits friends, but she says she'd rather have care at home 'when the time comes' (she doesn't recognize the agency visits she already has as care, I sold it to her as 'just someone coming to check each morning that she's not fallen down the stairs', and something 'anyone living alone should have').

I wonder, is it ever 'too early' for someone with dementia to go into a care home? Perhaps I should push my mother again on this, point out that she'd have more enjoyable days with activities and different people to talk to.

Do any of the homes on your list have a day club?

My dad's one did, and it would be a good way to make the home and some of its staff and routines familiar while she's still able to build the relevant memories - then it's less disorienting if she needs to move there full time.

We had a chat with MIL carers alongside the Adult social care team, and they were both in agreement that Alzheimers sufferers should probably be cared for at home until nights are a big problem. This has meant she is still at home despite now being bedbound, with 4 care visits a day. She has little quality of life, but she does "like" being at home surrounded by her stuff.
So to be honest, who knows when the best time is.

Does your mum have a Carecall pendant OP? An accessible bathroom, can you create a bedroom for her downstairs...all things to be considered. Otherwise she might be better off in some sheltered/accessible living development (which can be a pain in the rear as the stays are often short as the person deteriorates and DOES need residential care.)