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Dementia and Alzheimer's

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How will they tell her she's got it?

65 replies

Haveyoubrushedyourteeth · 25/02/2024 01:34

My elderly mother has been behaving oddly for a few years now, but it's got much worse over the last one.

Whilst she's not struggling to find the right words, she talks absolute fantasy I'd say 90% of the time. If you didn't know her you'd believe that she absolutely was a teacher/nurse/social worker. That she bought her children their houses. That she met a lady who was looking for work whilst on her daily walk, employed her as a cleaner and now she can't find her jewellery. You get the picture.

Last year her anxiety and inability to sleep was getting too much for her, and she quite suddenly became aware of a problem that she's lived with for years. She couldn't settle, repeatedly saying that her problem was ruining her life and she didn't know why she had it (it was a result of a car accident many years ago) She refused to go to the doctors, so I requested a general health check with her GP and they sent her for tests including at DAT and MRI.

We've yet to get the results, but I'm almost certain it's dementia, and I'm absolutely certain that she has no idea that thats what they're going to tell her. I know she's going to be terrified, and I know she's going to look to me to tell her it's going to be OK.

Can anyone please tell me from experience how they deliver the diagnosis? Will it just be "sorry you've got xyz" and then we're left to it? Will they just drop it on her,, or do it softy so that she's not frightened to death?

I'm sorry for waffling, and thankyou if you've got this far. I don't feel anywhere near adult enough to know what on earth I can say to her, or how to put the positive reassuring spin on it that I know I'll somehow have to do. My logic is that if I've got something in my head already prepared then I can keep her as calm as possible for as long as possible..

OP posts:
Exasperateddonut · 02/03/2024 21:25

Haveyoubrushedyourteeth · 26/02/2024 19:49

Thankyou @Exasperateddonut sending you a hug, it's a really horrible club to be in. I stupidly thought it was just being forgetful, God how I wish it was 😔

It’s so awful. Big hugs to you too. I’ve found myself having to take a huge step back for some time as my own mental health was suffering terribly. I hope you find some help and strength.

jamswell · 02/03/2024 21:38

My mum was never told it was dementia. She used to get upset about not being able to remember things and I used to say to her

'You've lived for 90 years so you've got so many decades of memories to store. Your head can only store so many, and you remember all about the war and lots of other things, it's just that some things you haven't got room for sometimes. It's totally natural when you've had such a very long life'. This would be acceptable to her and she'd forget we had the conversation shortly after.

CadyEastman · 02/03/2024 22:26

That's such a lovely way of reassuring her jams Flowers

Supersimkin2 · 02/03/2024 22:32

Does she drink? Lots of confabulation going on, which is typical of drink damage to old brains.

DM won’t understand or remember the diagnosis. Don’t worry. But dementia’s a master of irony, so suggest the doc uses a term she doesn’t associate with senility.

Get POA sorted so you can protect her.

HoneyButterPopcorn · 02/03/2024 22:46

Hopefully it won’t be the way they told my sister (in her late 50s).

Consultant (humourless and smug cowbag of a woman) ‘…and my other dementia patients say…’

My sister and her husband in unison ‘your other WHAT patients???’

Haveyoubrushedyourteeth · 02/03/2024 23:28

@Supersimkin2 nope never been a drinker at all, very health conscious and very clever indeed. I think that's why she's not showing confusion with words, because her brain can easily replace them.

@CadyEastman I think we need a diagnosis before any allowances can be applied for. The main thing that would help would be a disabled parking disc, but as her mobility is fine there's no chance of that. Trouble is when I'm taking her somewhere I often can't park, but I can't drop her off nearby and leave her to make her own way there while I find somewhere for the car.

@jamswell thanks, that's almost word for word what I've been telling her when she's been worried about forgetting things. It makes sense to her that that's what it is, so I'll be doing it for as long as possible

@HoneyButterPopcorn that's dreadful, your poor poor sister. That's exactly what I'm frightened of. Mum's not right at all, but on a good day she's still sharp enough to pick up on something like that.

OP posts:
Exasperateddonut · 02/03/2024 23:37

@Haveyoubrushedyourteeth

you can apply for attendance allowance now. The form is LONG but doesn’t need a diagnosis. A blue badge is easy if she’s got attendance allowance or a gp will write a letter in support before that.

Haveyoubrushedyourteeth · 02/03/2024 23:37

@Exasperateddonut I can absolutely understand why you needed to take a step back and how hard it must have been to do so. I've never experienced mental exhaustion like it.

When she needs me I have to jump immediately or she gets upset, and upset makes it worse. There's never a quick pop in because I feel so guilty that she's alone, but then I feel guilty for leaving my kids on their own while I'm with her for hours....

There's no winners in this is there.

OP posts:
Haveyoubrushedyourteeth · 02/03/2024 23:39

@Exasperateddonut that's really helpful thankyou so much.

OP posts:
baffledmum · 02/03/2024 23:41

Hello, I can speak from experience here. I went to all of my mum’s appointments and was with her when the diagnosis was given. We looked through the dementia with Alzheimer’s leaflets together and then she asked me why we had the leaflets. I realised then that while the dementia was my mum’s, the loss was mine. We never spoke of it again. I remember seeing a poster that said “Looking after someone with Alzheimer’s can make you forget who you are.” Never was a truer word said.

Dressinggownonthefloor · 02/03/2024 23:48

My DF has just been diagnosed but he didn't want to know the findings so the memory clinic just rang and wrote to me with the diagnosis.

Haveyoubrushedyourteeth · 02/03/2024 23:54

@baffledmum I'm very sorry to hear about your mum.

I'm nowhere near as far down this path as many previous posters, but already I'm getting lost in it and forgetting who I am. I used to be sociable and have energy, now id rather stay at home and make excuses.

We don't dare make plans for summer holidays, because what about mum. I've been approached to apply for promotion at work, but declined because, well mum. We were set to downsize in the next couple of years, and relocate potentially, but....well you get the idea.

You've given me clarity when I didn't even realise I needed it, thankyou.

OP posts:
Exasperateddonut · 03/03/2024 00:28

Don’t put off those life changes. You need to live for yourself.

CadyEastman · 03/03/2024 10:08

I think we need a diagnosis before any allowances can be applied for.

I think that's true for the reduction in Council Tax but I'm sure that Attendance Allowance is need based rather than diagnosis.

I don't suppose it would hurt to ring them and ask them to send you the forms to fill in? It can take a fair while to fill in but if you've called and had the forms sent to you, they'll backdate payments to the date of the phone call if the application is successful.

Another thing to fill in is the Herbert Protocol. Google her county police name and Herbert Protocol, first example "Derbyshire Police Herbert Protocol".

It's designed so they you have all the information on hand if they ever go missing. We were very lucky that DMIL went missing in the middle of summer. God knows what would have happened if it was freezing.

I'd also recommend filling in This Is Mee* and keeping an electronic copy handy. It can be given to Carers, the Hospital if she has an admission and to anyone looking after your DM. Most Carers are happy to receive it as it can help them form a bond and look after your DM appropriately Flowers

Haveyoubrushedyourteeth · 03/03/2024 10:40

@CadyEastman that's so helpful thankyou, very much appreciated.

OP posts:
Exasperateddonut · 03/03/2024 20:56

Oh yes!!!!! So. If you get a form sent to you by post, it is backdated to the day you phone and you get the money from that day. If you print it then it goes from when they process it. In our case it was THREE MONTHS. But they backdated it as I used their form that was posted out.

CadyEastman · 03/03/2024 21:05

Exasperateddonut · 03/03/2024 20:56

Oh yes!!!!! So. If you get a form sent to you by post, it is backdated to the day you phone and you get the money from that day. If you print it then it goes from when they process it. In our case it was THREE MONTHS. But they backdated it as I used their form that was posted out.

3 months is a huge amount, especially as Attendance Allowance doesn't pay nearly enough.

Exasperateddonut · 03/03/2024 22:41

CadyEastman · 03/03/2024 21:05

3 months is a huge amount, especially as Attendance Allowance doesn't pay nearly enough.

It wasn’t ideal. But I’m glad it was backdated. It just angers me that you have to know all the tips and tricks to get anywhere . It’s not good enough.

CadyEastman · 04/03/2024 07:40

It wasn’t ideal. But I’m glad it was backdated. It just angers me that you have to know all the tips and tricks to get anywhere . It’s not good enough

It really isn't good enough. When I said it was a bit of a steep learning curve with my DMiL I really wasn't joking.

Two books I wish I'd read at the beginning were:

The Twighlight Shepherd by John Oakstone &

Contented Dementia by Oliver James.

CadyEastman · 04/03/2024 08:02

*Twilight!

Exasperateddonut · 09/03/2024 14:46

CadyEastman · 04/03/2024 07:40

It wasn’t ideal. But I’m glad it was backdated. It just angers me that you have to know all the tips and tricks to get anywhere . It’s not good enough

It really isn't good enough. When I said it was a bit of a steep learning curve with my DMiL I really wasn't joking.

Two books I wish I'd read at the beginning were:

The Twighlight Shepherd by John Oakstone &

Contented Dementia by Oliver James.

Thank you so much- I have ordered both!

StormsAreNeverNamedAfterMe · 09/03/2024 15:22

DF was told at the memory clinic &handed an Alzheimer’s society book. But he wasn’t having any of it, was rude about the medication and doctors to the Dr’s face , and in his hurry to leave the clinic fell over.

We got no further help from the clinic after that, and he remained in deep denial, and sadly paranoia that I’d got him falsely assessed in order to steal from
him :(

Alzheimers society and here were good for me to vent, and reinforcing that such accusations were common and I should try to distract him, & ignore them.

As others have said,
Attendance Allowance - order form now by phone, doesn’t need a diagnosis, just fill it in with worst possible day. If you need help they can send someone out to fill it in for you.

When you get diagnosis ask for confirmation in writing from clinic & her GP. With this find her Council’s Severe Mental Impairment reduced council tax form and fill it in, accompanied by copies of those letters as required proof. Ask Council to send letters about the award to you, or intercept them as DF raged when he saw the factual but awful form name and destroyed the first few before I caught them.

The Hospital admission booklet is invaluable, and be warned that every UTI and every hospital admission will probably increase dementia symptoms. I’d have pushed harder for hospital at home treatment at the beginning if I’d known what a terrible impact a week in hospital would have on DF’s state of mind going forward.

I added Tiles or Apple tags to his keys, wallet, anything else he regularly used and misplaced. And bought kids name tape stickers with my phone number on for lost things. This helped with the constant lost keys, wallet, phone, glasses cycle.

Hearing loss makes everything worse, so I got hearing aid tethers for out and for hospital, so that they were less likely to go missing. One was always attached to his coat and one in his hospital bag.

Our GP say they couldn’t help with the blue badge, as it is outsourced. We had to go for an assessment, which thankfully he failed. Once we did get it, register with the hospital car parks, and congestion charging zones.

After he died I found many books on preventing dementia & coping with symptom's in his library. Some with multiple copies, forgetting he already had bought them :(

Exasperateddonut · 09/03/2024 19:03

@StormsAreNeverNamedAfterMe your post is so useful. I’m just jumping in here to say thank you even though it’s not my post. I’m sorry you’ve been here too.

Haveyoubrushedyourteeth · 09/03/2024 19:35

@StormsAreNeverNamedAfterMe I've had a really rough couple of days, (we're now back in the looking for an argument/paranoid/thoroughly unpleasant stage of this again) so your post is EXACTLY what I needed to read. Thankyou for taking the time to write down everything so clearly. I'm so exhausted with it and you've made things so much easier. I really appreciate your kindness. I'm so very sorry that you've been here too.

OP posts:
Exasperateddonut · 09/03/2024 20:35

@Haveyoubrushedyourteeth we’re going through this too. You’re very welcome to message if you need someone to chat to. It’s bloody tough isn’t it?