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Elderly parents

Did your parent's dementia start like this?

76 replies

choisia · 05/03/2023 22:33

And how did it progress? I know everyone is different, but just trying to get some handle on how things with my mum might develop, and what we need to be thinking about for the future.

For the last maybe two years, we've been getting increasingly concerned about my mum (mid 70s). She's become more forgetful and more repetitive - telling stories frequently, losing things a bit more - but has also become more withdrawn and anxious, not wanting to go out much any more (having previously been fairly sociable). She's also developed terrible insomnia. I think the Covid period both exacerbated and masked some of this. My parents also moved house about 18 months ago, which was stressful but necessary.

More recently, perhaps in the last 3-6 months, things seem to have accelerated a bit. Mum's now sometimes forgetting basic words as well as facts or names - not all the time, but she's sometimes unable to 'find' a normal word mid-sentence. She's misremembering things that have happened (eg she'll swear blind that an event or conversation either happened or didn't, which we know is incorrect). She's repeating not only stories, but also questions, sometimes two or three times in the same conversation. She's increasingly flustered by things she would once have taken in her stride - eg we went over for lunch today and she was cooking a fairly simple roast, and I had to gently take over, as she was really struggling with how to get things ready at the right time, how to tell if the meat was cooked, getting very anxious over the whole thing. We played a couple of board games with the kids (games that she knows very well), and she was very confused about how to play. We were having a chat about my grandparents (her parents), and she didn't have the vaguest idea of what year her mother died (she would once have known the exact day without thinking). She also got quite cross with my dad over a couple of very minor things, which he was totally blameless about. But I don't want to exaggerate the issues - a lot of the conversations I have with her are still pretty normal.

I'm thinking this may be the start of dementia, but I want to know whether I'm jumping to conclusions and this might just be ageing, or whether others experienced similar symptoms with their parents. I feel so sorry for my mum - I know that's she's worried and unhappy about her memory, as she's talked to me about it. She's had a memory test and the GP has referred her for a more detailed test, but warned it could take ages to receive an appointment.

As far as I can see, there's nothing much immediate that I can do - except talk to her and see her as often as I can (I work FT and don't live that close, so it's not easy), and try to take any pressure off her by inviting them to stay with us, or suggest we go out for lunch when we visit. I try to suggest that she still tries to go out, see friends, and get a bit of exercise, but she's very resistant. We've done LPOA, so that's sorted. My dad is very capable, so she's in pretty good hands day to day (though his own memory is not what it was, and I do worry what would happen to mum if he suddenly died or became ill). I just have no idea really if my worries about dementia are justified, or how quickly things might deteriorate if I'm right. Thanks for reading.

OP posts:
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PaulaPaola · 05/03/2023 22:41

I'm sorry, it does seem as if it might be.
It's not a pleasant road.

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TokyoBouncyBall · 05/03/2023 22:49

It does sound similar to our experience. But you can get drugs which slow the progress down, so it is worth pursuing with the GP

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Confusedsyravauser · 05/03/2023 22:51

Sounds very familiar indeed. I’m slightly further ahead on the same journey. Well done for getting her in the system towards seeing if this wretched disease is the reason.

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GreatContinental · 05/03/2023 23:21

Repeated stuff for years
Clothes on backwards
Had to be reminded to use cutlery

Not sure why you would want to slow it down? In the hope that they die of something else first?

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amysmom · 05/03/2023 23:32

It’s possible that this is the start. My dad has recently been diagnosed with early mixed dementia - his became obvious when he could no longer handle his diary and couldn’t remember what was happening in the immediate future - if you met him
you wouldn’t have a clue as he is quite capable
of discussing politics, the news and everyday stuff but planning what’s happening now is hard. My mother in law has been diagnosed last week with vascular dementia and struggles with names and finds following instructions hard such as receipes etc … both parents were diagnosed via the gp and clinics and tests - it’s a bloody hard journey to go on and watch and i feel for you - the only way to get a diagnosis is to do the tests and remember that in some forms of dementia there are tablets to slow the progression down. It’s tough but thinking of you x

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Enthrallingstory · 05/03/2023 23:35

GreatContinental · 05/03/2023 23:21

Repeated stuff for years
Clothes on backwards
Had to be reminded to use cutlery

Not sure why you would want to slow it down? In the hope that they die of something else first?

That would be my thinking probably

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NoPrivateSpy · 05/03/2023 23:44

Very similar over here and she has just had a memory clinic diagnosis of Alzheimer's.

MIL is very depressed and anxious she is going to die. It must be very hard to hear.

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vipersnest1 · 05/03/2023 23:52

@GreatContinental, maybe because dementia is such a cruel disease? The person who has it is still alive, but has lost all of the things that make them, them.
I understand your meaning but it does come across as callous.
I have a friend who had to cope with her DM living for several years with dementia and it was heartbreaking for her.
I watched my DM's loss of memory and grasp of things before she died (for another reason) and that was difficult enough.
@choisia, no-one here can tell you - it varies so much. I really feel for you. Flowers

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MarshaMelrose · 05/03/2023 23:56

Yes, that was pretty much my mum's journey with dementia.
Get LPA while she's still got capacity. It makes life so much easier further down the line.

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MarshaMelrose · 05/03/2023 23:59

Enthrallingstory · 05/03/2023 23:35

That would be my thinking probably

I had it explained to me like this. Dementia is going to kill her. The medication won't stop that. But it might help keep her able to dress herself, feed herself and stay continent for longer before she dies.

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GreatContinental · 06/03/2023 00:04

vipersnest1 · 05/03/2023 23:52

@GreatContinental, maybe because dementia is such a cruel disease? The person who has it is still alive, but has lost all of the things that make them, them.
I understand your meaning but it does come across as callous.
I have a friend who had to cope with her DM living for several years with dementia and it was heartbreaking for her.
I watched my DM's loss of memory and grasp of things before she died (for another reason) and that was difficult enough.
@choisia, no-one here can tell you - it varies so much. I really feel for you. Flowers

Didn't mean to sound callous- just practical

My DM always said that she didn't want to live with dementia- which she now has- our hope is that she doesn't have to live with it for long

Delaying would increase the risk that she outlives her husband- which neither of them would want/have wanted.

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TheOtherHotstepper · 06/03/2023 09:05

MIL didn't send me a birthday card, for the first time ever. DH glossed over it saying he thought she had just forgotten, which would have been unusual. Four months later, he did not get a birthday card either and then I knew. Things went downhill very quickly after that, but she lived for another six years, although she did not know me for most of that time. Very sad and very difficult for her DC who found it almost impossible to accept.

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scoutcat · 06/03/2023 09:19

My grandpa was on the coach back from a trip to Eastbourne and asked my grandma where they were going on holiday - he'd obviously completely forgotten that they'd been. My grandma told my dad who is was a mental health nurse, with lots of experience working with people with dementia and he got him seen by the memory clinic quite quickly. His diagnosis came soon after. It was quite sudden and within the year wasn't able to drive or be without constant supervision.

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MereDintofPandiculation · 06/03/2023 09:28

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MereDintofPandiculation · 06/03/2023 09:29

Things you can do apart from encouraging exercise and social activities:

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Hotcuppatea · 06/03/2023 09:32

Mum repeated things for years, found it impossible to remember any instructions that were two steps or more, and then started to hallucinate.

She's now in the late stages and wants to go home to her mum and dad's house. Doesn't know who any of us are. Sometimes doesn't know who she is. It's very sad and she suffers with it, but there are still moments of laughter, connection, and joy.

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knittingaddict · 06/03/2023 09:33

Yes, that's how it started.

💐for you op.

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So1invictus · 06/03/2023 09:35

Exactly the same. Almost word for word.
Including the meals and timings. She was looking after DD and DD would say that they had lunch about 4 because Nan wanted to go to the bank, so they went out to the bank about 12.30 then did the shopping etc. Or she'd be cooking for all of us and the portion would be for one person.
What we did was quietly have a word with the GP who set the wheels in motion for a memory test. She said "they're calling all us oldies in to do a test".
Getting a diagnosis is useful, because it gets you in the system and opens doors to help. Once my mum was diagnosed she went to a memory group twice a month for example.

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MereDintofPandiculation · 06/03/2023 09:36

…hit “post” too soon

  1. get her hearing checked. It’s difficult to know your hearing is deteriorating, the only sign is people are mumbling more - in fact your losing the top frequencies and hence not hearing “s” and “t” and similar. Loss of hearing means it’s easier to sit in the corner and let the conversation wash over you. Poor hearing is linked with development of dementia


2. Get her blood pressure and cholesterol checked. Dementia is thought to be to do with oxygen supply to the brain, and so it’s recommended to deal with high blood pressure and high cholesterol
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girlwhowearsglasses · 06/03/2023 09:40

GreatContinental · 05/03/2023 23:21

Repeated stuff for years
Clothes on backwards
Had to be reminded to use cutlery

Not sure why you would want to slow it down? In the hope that they die of something else first?

Yes another agreeing that that is exactly why you’d want to slow it down. It’s brutal all round and you don’t want to see you relative die of it if a heart attack or pneumonia might happen before dementia kills you.

OP people can live girly normally for quite a while (esp if they do take the drugs that can slow it) with dementia- witnessed by how long people generally mask it for. I’m May dads case years looking back with hindsight. There are lots of things you can put in place before diagnosis as ‘helpful reminders’ - for instance a dementia clock, and setting up ‘Find My’ on her phone, and plenty of written notes like what you need to take when you leave the house…

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neilyoungismyhero · 06/03/2023 09:50

I could have written your post word for word about my DH. He has random rages about irrational stuff too, I've learnt to not argue.
He is also waiting for an appointment at the Memory Clinic. It's beyond heartbreaking thinking about what lies ahead for him.
I'm sorry about your relative It's hard to deal with.

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MatildaJayne · 06/03/2023 09:57

Yes, it sounds all very familiar. My mum has vascular dementia and started out just being a bit forgetful in her mid 70s, but that did progress to forgetting how to do some basic tasks, like which food needed to be stored in the fridge, how to use the TV remote control. Later stages were anxiety, paranoia and hallucinations which seemed very real for her, sadly. She went from twice daily care workers to needing 24 hour care within 3 years. The whole thing went from being very forgetful to her needing 24 hour care in 6 years. She had drugs at that point to ease her anxiety which made her last year much happier and calmer but they did hasten her demise.

Get lasting power of attorney, health as well as finance asap, it will help you later on.

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countrygirl99 · 06/03/2023 10:40

Sounds very familiar. I echo what Meredintofpandinculation said about getting hearing tested. BUT if it is dementia she may well not remember having her hearing tested and insist that they must be someone else's hearing aids.

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Crazycrazylady · 06/03/2023 11:30

I'm afraid this does very much sound like dementia. Some good drugs out there now which can help a bit. My dad started oh something called Donecept which he and we think has improved things.
We started it as soon as we noticed a few bits though so not sure if that made a difference

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IthinkIsawahairbrushbackthere · 06/03/2023 12:16

My mum does not have a diagnosis but she clearly has dementia. She was at home (in my garden) with two care visits a day and I did everything else - took her to the toilet/cooking/cleaning/shopping/sitting with her for hours. She had hallucinations - visual and audio - and strange obsessions. She would worry for hours about Dr Jenny Harries, the deputy medical officer, and worry that she had been killed off!

In the six months before she went in to hospital and dementia was first suggested she couldn't use the tv remote, would struggle with the telephone (although strangely she could always get hold of me!) she couldn't understand instructions - not able to turn around to sit down in the wheelchair for instance. Also she could not follow the plot of a tv show - not even something simple like Mallory Towers on Cbbc.

Then she had a fall and after speaking to the carer and the GP we called the ambulance and said that the GP queried a stroke. It was while she was in hospital that "cognitive impairment" was first mentioned and then when she was transferred to rehab it was apparent that without me to prop her up and help her mask her symptoms she clearly had dementia. By the time she moved to the nursing home she was doubly incontinent and was confabulating every conversation.

So from the first suggestion of dementia to her being unable to hold any sort of conversation was a very speedy decline.

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