Dementia again

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Texaco Shirley
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Dementia again

Post by Texaco Shirley »

I thought I’d start a new thread rather than piggy back on an old one. Apologies now, it will be a bit of a brain dump.

As I think I’ve splurged on here my mum’s mental state is giving us increasing cause for concern. Up until maybe 6 months ago it was difficult to work out what was down to her usual personality, a normal consequence of ageing or actually a worry. At Christmas she managed to arrive in Frome a full day early with no apparent understanding of why this might be a problem and it was sheer luck that we happened to see her crossing the road when we were driving past (on a road we rarely ever drive along). Since then she has increasingly lost track of the day and time although some of that is a natural consequence I think of living on her own without a regular routine. We went up to stay with her overnight for her birthday in January and discovered that she had no hot water, hadn’t done for weeks possibly months and just hadn’t mentioned it (she’d accidentally turned the immersion off at the mains). In February MrTex got a birthday card on time (this is at least positive) but she was then here for mother’s day/my birthday and was surprised to get a mother’s day card. She asked when my birthday was (the following day) but that was it. I opened cards at the breakfast table but she didn’t even register it enough to say Happy Birthday (I wasn’t expecting a card obv). I’ve just spoken to her now and she was asking if there was anything the boys particularly wanted. I took this as positive thinking she’d realised it was their birthdays (L’s last weekend, A’s on May 21) but it transpired that she thinks it’s Christmas Day and spent today writing Christmas cards and being amazed that she couldn’t find any cards in the shops. We did however have quite an I depth conversation about Jill Dando being shot as she remembers that quite clearly.

Anyway (brain dump over) clearly there is a significant issue which she is unable or unwilling to realise. We have been trying to work out how to get her closer to us. Initially we were thinking of the retirement village type option but we also considered renting the cottage round the corner at least as a trial but she absolutely will not have it. I think the only thing that would persuade her is an official medical opinion but I’m dithering about the best way to approach it. I can suggest it would be helpful to see a doctor and I will go with her but she could well get defensive and refuse to have anything to do with it. Alternatively I could try to get in touch with her GP and ask if they could call her in under the pretext of a general health check (my friend had some success with this approach with her dad).

Does anyone (Goat? :goat: ) have any experience/advice?

Congratulations if you got this far and thank you.
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Glint
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Re: Dementia again

Post by Glint »

Tex, I'm sorry to read things have deteriorated. In your position, I think I'd try going down the gp /nurse routine visit initially.

Others will be more helpful than I am.
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sally maclennane
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Re: Dementia again

Post by sally maclennane »

Oh Tex, that sounds very hard. Your poor mum, and poor you too. I would definitely pursue the GP thing, could you contact her surgery and see what they could suggest?

In the meantime, what about organisations like Dementia UK? Just to get some background info, and they have a helpline. https://www.dementiauk.org/
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Texaco Shirley
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Re: Dementia again

Post by Texaco Shirley »

I’m trying to find out who her surgery is. I have asked but she couldn’t remember the GP’s name and her description of where he is narrowed it down to 5 surgeries. She said she’d check the name so I’ll phone her again tomorrow.
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Lily
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Re: Dementia again

Post by Lily »

I have no advice, but I didn't want to read and not post. I'm sorry. It may be worth asking your GP for advice as they will have experienced this a lot and will be able to advise on how best to approach it.
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Texaco Shirley
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Re: Dementia again

Post by Texaco Shirley »

Actually that’s a good point Lily. Not so much my own GP but my neighbour is a GP, she might have some advice. Thanks.
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Morganna
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Re: Dementia again

Post by Morganna »

My mum is 84, and a few of her friends are going through this. One of them struggles to find a word, to the point where it can take ten minutes for her to finish a sentence. She went to her GP about her hip, and the memory loss was so bad that she picked up on it and referred her for an assessment.

When Eric (my mum's late partner) developed Lewy Body (a form of dementia) she went to his GP and said she was concerned. Eric was somehow persuaded to make an appointment for something (can't remember the detail) and things went from there. The GP wasn't at my mum's surgery, but was still willing to listen to her.

I am not at all sure that retirement villages will allow people with dementia to stay. Another of my mum's friends enquired about one, when her husband was in the early stages, and it was in the regulations that residents had to have a medical before they could live there, and they couldn't support residents with serious medical conditions. They may all be different, but it's worth bearing in mind.
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Texaco Shirley
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Re: Dementia again

Post by Texaco Shirley »

The retirement villages we’ve (MrTex and I, not my mum) looked at Do all offer dementia care but I’m not sure they would be suitable anyway as they tend to be a bit isolated p.
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Zoomer
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Re: Dementia again

Post by Zoomer »

I have no advice, but I’m so sorry to read this, Tex. Poor your mum and poor you.
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Re: Dementia again

Post by Mountain Goat »

Oh Tex, I'm sorry to hear this. It does sound terribly familiar. I don't have much time right now (but will come back to it tomorrow) but it's completely standard that she's reluctant to engage with the possibility something's wrong. It's a lot to admit to yourself. How you deal with that is entirely dependent really on her personality, but I've had success with the general health check approach too, so I'd certainly consider that. I found that being a bit eye roll-y about how they're always making you go for these checks these days, but if we just get it over with then it's done, and we can have a sandwich in that nice cafe next door after, or similar. There is likely to be a Memory Clinic or similar at the local hospital, though I can't remember if you need a GP referral or anything.

If she has dementia, then it will make a big difference to your planning to be on the route to finding out what kind. If it's Alzheimer's, it can often be effectively managed with drugs and the progress slowed. In that case, long term plans about moving to somewhere like a retirement village could be good. If it's vascular, it progresses in sudden bursts, and I'd be wary about making plans to move her until you know more. Moving someone with dementia can make things worse in the short term as everything is unfamiliar, and if it's a situation where she might need additional care and have to move again fairly shortly, it might be better to hold on.

I'm sorry you and your mum are dealing with this.
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Re: Dementia again

Post by kiwi »

We've been through this with M's mum over the last 8-9 years. I think in your case the first port of call would be your GP to find out what you can do from a distance. It may well be that social services could get involved if there is no relative living nearby? Then there will be referrals to a specialist for all manner of tests and things before they will give any official diagnosis, which in our case took so frigging long they were almost pointless as her condition was so obvious, but you need the diagnosis to get access to the care she will need blahblahblah.

I hate to be blunt, but do you have Power of Attorney over her financial affairs? It was the first thing her doc said to us, which seemed a bit heartless at the time, but I cannot tell you how much easier it has made some things. I'm really sorry you're having to go through this.
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Texaco Shirley
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Re: Dementia again

Post by Texaco Shirley »

The POA for her financial affairs is in progress.
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Texaco Shirley
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Re: Dementia again

Post by Texaco Shirley »

Mountain Goat wrote: Fri Apr 26, 2019 8:41 pm Oh Tex, I'm sorry to hear this. It does sound terribly familiar. I don't have much time right now (but will come back to it tomorrow) but it's completely standard that she's reluctant to engage with the possibility something's wrong. It's a lot to admit to yourself. How you deal with that is entirely dependent really on her personality, but I've had success with the general health check approach too, so I'd certainly consider that. I found that being a bit eye roll-y about how they're always making you go for these checks these days, but if we just get it over with then it's done, and we can have a sandwich in that nice cafe next door after, or similar. There is likely to be a Memory Clinic or similar at the local hospital, though I can't remember if you need a GP referral or anything.

If she has dementia, then it will make a big difference to your planning to be on the route to finding out what kind. If it's Alzheimer's, it can often be effectively managed with drugs and the progress slowed. In that case, long term plans about moving to somewhere like a retirement village could be good. If it's vascular, it progresses in sudden bursts, and I'd be wary about making plans to move her until you know more. Moving someone with dementia can make things worse in the short term as everything is unfamiliar, and if it's a situation where she might need additional care and have to move again fairly shortly, it might be better to hold on.

I'm sorry you and your mum are dealing with this.
Thanks Goat. When you say sudden bursts what sort of timescale constitutes sudden? To me this is how it seems but it could just be that I don’t see her often enough to realiseit’s gradual IYSWIM.
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Re: Dementia again

Post by Mountain Goat »

In vascular dementia, they have tiny strokes (TIAs) that damage a small part of the brain each time. Sometimes it's clear that one has happened, sometimes it's more subtle, but the impact is more or less immediate. With Alzheimer's it's more of a gradual progression.

I am writing quickly while out so really hope I'm not being blunt.
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Texaco Shirley
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Re: Dementia again

Post by Texaco Shirley »

No it’s fine. I know the difference in the 2 types but have no idea of relative timescales.

Don’t worry about replying tonight, enjoy yourself!
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Re: Dementia again

Post by kiwi »

M's mum has vascular dementia and has bursts of change as Goat describes (although not so much now that she is a long way down the road.) It's impossible to say how long each step down will last, and annoyingly at times M's mum would appear to improve which led to us questioning our own understanding of the situation. The changes could be sudden and almost overnight, or so it seemed.
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Texaco Shirley
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Re: Dementia again

Post by Texaco Shirley »

That sounds very familiar kiwi. Every time I speak to her I expect the worst, am pleasantly surprised and then there’s a step down.
kiwi
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Re: Dementia again

Post by kiwi »

That was the worst for M really, the days when she was so clear and coherent that it was like his mum was back. Then the next day, back to talking nonsense and knocking on the neighbours doors for a sandwich. If it's any consolation the more she has deteriorated the 'easier' it has become, you're really at one of the most difficult bits at the moment. It sounds very similar to Pick's Disease which is what his mum was finally diagnosed with, albeit about a year after we'd Google diagnosed her ourselves. :ella:
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absley
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Re: Dementia again

Post by absley »

I'm sorry you're having to deal with this Tex, it's so hard.

With my dad, my mum arranged 'normal' check ups with the doctor but briefed them in advance so they could give us a longer appointment and to make sure the mental stuff was looked at. He'd then inevitably be having a good day so the the picture only emerged v slowly for the doctors.

With my dad there seems to be a general slow deterioration but then bigger changes as well. Someone described it like walking along a gentle downward slope but with stairs interspersed. Sometimes the stairs are in close succession and they vary in depth. It's a clumsy metaphor but helped me to understand a little more.

Is your mum reluctant to move, full stop? Is she close enough so you (or someone) could pop in more regularly, to try and notice things like the hot water issue?

WRT to POA - I think it's helpful to have the medical version as well as financial. I think that's what we have in place anyway.
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Bat Macdui
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Re: Dementia again

Post by Bat Macdui »

I'm sorry, Tex, that sounds really hard.
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