Did your parent's dementia start like this?

[choisia]

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more forgetful and more repetitive - telling stories frequently, losing things a bit more - but has also become more withdrawn and anxious, not wanting to go out much any more (having previously been fairly sociable).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.

[choisia]

Thank you all so much, and sympathies to those who have gone through or are going through this with their parents (or their partner - I'm so sorry 💐). It's really striking how many people said their experience was almost identical. I had hoped I was overreacting about mum's symptoms, but it sounds like I'm not.

Thanks for all the practical suggestions. LPA for both health and finance is already in place for both my parents, which is good. Mum stopped driving a year ago, which is also good (she always hated driving and was desperate to give up - though looking back now, I wonder if it was also a skill she was starting to lose).

It's encouraging that there might be drugs that can help, as her view is very much that if she's got 'it' then there's nothing at all to be done. Just have to hope that the memory clinic referral comes through sooner rather than later - though there's also a part of me that wants to put off the moment at which she might be told she's got dementia. She's already so down all the time. I do wonder whether anti-depressants might help her. .

[MarshaMelrose]

My mum is much further along than yours. As she got worse, she became very negative and down, and, as she was a bit scared of what was happening, she could be a bit sharp. I got the doctor to put her on antidepressants, (sertraline) and she's like a different person. Her carers couldn't believe it. O wish we'd done it a couple of years earlier. So definitely pursue that option.
We also found the memantine calmed her down as she started to get agitated as the disease progressed. Memantine won't cure her but it will slow the decline of those physical tasks, like dressing, going to the toilet, etc. The two together have been transformational for my mum.

[MarshaMelrose]

And the one other thing I would say is enjoy her now. Because from now on, each day is her best day as she progressively declines. I spent six months being angry and trying to find help, that I lost, wasted, six months of spending time with her whilst she was still fairly with it.
It's an awful illness but it really does teach you the value of enjoying each day.
Good luck. There's aways help and a friendly ear here.

[girlwhowearsglasses]

@choisia Just wanted to come back and recommend listening to

Travellers to Unimaginable Lands: Dementia, Carers and the Hidden Workings of the Mind by Dasha Kiper

All episodes available currently and a really in-depth examination of what it's like to be in a close relationship with someone with dementia - and how it affects us. I wish I'd had this when my DF was with us

[DappledOliveGroves]

It sounds very familiar and much like my mother's decline. She started off having to write everything down as otherwise she wouldn't remember. Then she struggled with tasks she'd been able to do - shopping, getting the bus, going to the allotment. She stopped all her hobbies. She got increasingly confused. Her writing became more erratic - she'd put letters alongside numbers when writing down a phone number for example. She had to stick labels all over the house to remind her how to use the TV, the remote control.

She was well aware that her memory was going as well - it was horrific for her and for us to watch.

She was prescribed medication to try and slow the dementia but she got so confused about having to take an additional tablet to her usual medication that we decided it was easier to stop taking it than have the confusion and agitation over taking it.

It's been 13 years since she was diagnosed. She is still alive (sadly). She is in a care home, weighs about six stone, has no speech, has no clue who we are and I pray she will die. It may sound callous but it's the most horrible disease.

If ever I am in that position I am going straight to Dignitas.

[choisia]

@girlwhowearsglasses thanks for that link, I'll take a look.

@DappledOliveGroves I'm so sorry, that sounds horrendous. Thirteen years! My mums youngish (76) and has no major health problems, so I guess any decline could take a long time for her too. My dad's always been adamant that he'd rather go to Dignitas than end up with dementia, but I guess the problem is that it's slow and insidious, and by the time youve really lost your quality of life, you're probably past the point of being able to arrange it. My mum might be depressed and worried about her memory going, but there are still things in life she enjoys, and I can't imagine her voluntarily saying goodbye to her grandchildren any time soon - yet she's already near or past the point where she'd have the ability to organise a trip to Dignitas.

[countrygirl99]

The problem with saying you'll go to Dignitas if you get dementia idms that a frequent feature is lack of insight that you have it. Often they forget that they have forgotten things or that they got in a state about something. My mum is convinced that she has no issues and manages everything just fine. She's forgotten all the times we've removed rancid food displaying an impressive mould growth from the fridge and every time we dois horrified and convinced she only bought/opened the tin yesterday. She forgot that a couple of days before dad's funeral she phoned another funeral director because she thought the hospital had only just phoned to say he'd died.

[IthinkIsawahairbrushbackthere]

@countrygirl99 "if you get dementia idms that a frequent feature is lack of insight that you have it"

Reading what you have written there has made sense of so much of my life while I was caring for my mum. It has flipped the way I view the past few years. Rather than seeing her as entirely self centred and entitled it really helps to understand that she could not connect her constant need for practical support ("turn on the tv", "take me to the toilet" "make me a drink" etc etc etc) with a need for care or the impact the constant needs had on my life.

[countrygirl99]

I think that's a large part of what makes it so awful. We are going to need to talk to mum about a care home soon. But she is convinced she is managing fine. She isn't and the things that are going wrong are hard to buy in help for or she won't allow the carers who come each day in. For example she has lost 2 debit cards and a credit card already this year. DB has had to cancel several cheques that have gone from her cheque book and she has no idea what she has done with them except to say she must have paid the gardener or window cleaner. She refuses to use a gardener and sacked the window cleaner for a spurious reason over a year ago. She insists she has a good social life but I know half the time her friend turns up to collect her for a weekly activity she has completely forgotten so doesn't go because she isn't dressed appropriately. The friend calls her about an hour before she picks her up.

[Losingtheplot2016]

It does sound like dementia but I understand there are other causes of these types of behaviours from what i understand. So it's always worth a chat with the GP.

What do her friends say? Are other people picking things up and raising it with you.

[choisia]

I don't have any contact with her friends, but my sister and I are very much of the same view. My dad is up and down - he's very worried about her but also very protective. He'll talk about his worries about her memory and her anxiety, but when the discussion moves towards dementia, he tends to deflect and say 'well all us oldies are forgetting things these days'. He's always had an absolute horror of losing his own mental abilities (very much a 'please god put a pillow over my face if I get to that stage' type) so I think he probably finds the prospect of my mum going down that road terrifying.

[mathanxiety]

I think you should have a doctors weigh in, but it does sound like the start of it.

[countrygirl99]

We managed to get mum diagnosed by contacting her GP and explaing our concerns. The GP called her in for a "general health check". Dad would complain to us but as soon as the GP asked any questions he was useless, but then he'd minimise his own problems so we shouldn't have been surprised. After the diagnosis we had a care needs assessment with social services and if DB and I hadn't attended you'd have thought they had no problems at all. At the time mum was caring for dad who had heart failure and mobility problems and it really wasn't working.

[choisia]

Thanks. I did contact her GP with my concerns, but never got a reply, so no idea if it was read (I realise they can't discuss her care, but an acknowledgement would have been good). I did persuade mum to mention her memory concerns to the GP, and they did a memory test there and then, so I wonder whether they had seen my email and were already primed for it. Dad was there too and said he thought the test was OK but there were some things she got wrong. Clearly the GP thought it was significant enough to refer her for a fuller test (or maybe it was the test result in conjunction with my email - who knows??).

[Butterflywing]

Yes, getting an appointment with the memory clinic is the first step.

It would also be a good idea to research Dementia and mental health, how it can impact a person's confidence and low mood and increase paranoia and psychotic episodes;, sexuality- it is common for people to become more uninhibited in what they say and how they behave; and dementia and aggression/ domestic violence- again it is not uncommon for people to lash out at their loved ones physically and verbally when they have dementia.

There needs to be much more awareness about dementia as it is very much lifestyle and country specific and not a natural progression for everyone in old age.

It is much more common in the west than elsewhere so nearly wholly related to diet and lifestyle.

We can do alot to safeguard ourselves from getting dementia and we should all be mindful about this.

Things that you can do now to diminish the chances of dementia developing:

Ensure you get a lot of good sleep - this is the time the body removes toxins/plaque in the brain.

Eat an anti inflammatory diet and limit processed meats.

Plenty of oily fish, leafy veg, unsalted nuts and seeds , fermented foods and and red/ dark berries .

Get in the practice of fasting rather than over indulging.

Learn something new every day.

Practice a musical instrument or speak a different language.

Take up vigorous exercise or at least double the speed you normally walk and then triple it if you can or go swimming if you prefer.

Keep your mobility and balance top notch so practice standing on one leg etc .

Having an open mindset rather than a closed one.

Keeping sociable, playing board games and anything with good hand eye coordination.

Doing daily wordle, nerdle, sudoku, crosswords etc.

As people can start developing dementia symptoms in their 20s and 30s ( yes really) it is never too early to start.

[gogohmm]

We think it was about 12 years from first signs to the end for my grandad. But might have been longer as we only noticed the issues after my grandmother passed away, at first we assumed it was grief but soon it was obvious that it was more. The first 5 years the symptoms were mild and we ignored them, but looking back that's when his symptoms progressed from. At the 5 year point we couldn't ignore it any longer as he was leaving the gas cooker on without a flame, going out naked etc but still could converse fine, not even anymore forgetful than he ever was (as far as my dad remembers, my grandmother was the organiser). But everyone is different, it's worth talking to the gp as there is medication to help keep symptoms at bay for longer now

[Streamside]

My aunt's dementia unfortunately started in a very similar way.She also had fairly frequent uti's and wasn't drinking enough so would get very dehydrated which really exacerbated her symptoms.

[amberedover]

haven't read thread sorry so may be repeating but this is recommended by friend
www.alzheimers.org.uk/about-dementia/symptoms-and-diagnosis/symptoms-checklist

[Sunshineismyfriend]

Gosh this is a worry. My relative had a memory test a couple of months ago as a brain scan (for something else) showed dementia was possibly in the early stages. Memory test was fine and relative did well but lately I’ve noticed some forgetfulness. Hoping it’s just usual forgetfulness but this person isn’t elderly and only 62. Am hoping if it is the start that this relative has a long time before they decline as they re so young.

[Valleyofthedollymix]

Has anyone got any experience of a relative for whom apathy was the earliest or biggest sign?

My mother was diagnosed with mild cognitive impairment last year and this week with Alzheimer's. I was musing on the fact that she just doesn't seem to give a monkey about my father's, whose older and physically very frail.

I googled apathy and dementia and was amazed by what a key symptom it is. I'm having to revisit the last 10 years - so many things now make sense. She used to be a brilliant cook and she just went on strike and swapped to ready meals. She never bothered with my birthday or that of my children. She refused to use any technology.

All the while, I was feeling resentful at how selfish she seemed and how callous towards my dad, but now I'm wondering if she's had frontal lobe damage for all this time.

I feel really ignorant, but I had no idea that this was a common symptom.

(I might put this in a separate thread).

[Clovacloud]

FIL didn’t cope well with MIL’s dementia at he was in denial about her ‘memory issues’ as he called it, even when she had forgotten him and lived in a little 5 minute bubble. He just kept thinking it was a blip and she’d get better.

Make sure your Dad has everything place to support him, he’ll need breaks from caring, he might feel that he can’t do her personal care when it comes to that point. Little things like a Blue badge so they don’t have to walk so far to the shops can help, or a portable wheelchair when she needs it when her mobility starts to go.

I would also recommend sort of tracker as a necklace or in your Mum’s clothes if she becomes a wanderer. FIL left MIL unattended for 20 minutes because of his denial (he thought she was fine looking round a shop) and she wandered off and was then lost for 8 hours on a boiling hot day. There ended up being a big police search for her.

I am so sorry you are having to deal with this, dementia is really awful

[FrownedUpon]

Sounds horribly similar to my DF. Good luck with your journey. It took 5 years from diagnosis to the end.

[Clovacloud]

@Valleyofthedollymix yes! MIL at about 58 basically stopped caring about anything. She stopped cooking, doing any hobbies, couldn’t give a toss about any of her grandkids who previously she’d been very doting on and basically became super bitchy and not very nice to be around. She also started behaving bizarrely like letting herself in our house and spending all day there while we were at work. We just thought it was nightmare MIL behaviour and moved further away!

She got diagnosed at 64 and died at 70. So in hindsight now we think it was the start of it, and she’d been ill for a lot longer than we realised. We feel awful because we didn’t know she was ill and we would have been way more understanding if we had known. It was so insidious, it changed her whole personality so slowly we didn’t realise.

[FirstnameSuesecondnamePerb]

My mum has not had a diagnosis but it's pretty clear that she has dementia. I'd say she was similar to what you describe in her mid 70s. She is 83 now and still managing in her own home. Moved her to a flat closer to me after covid. She struggles with word finding, and I suspect that she also has anxiety that she Masks from me.

[Timingiseverythingcoll]

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