I’ve convinced myself that I will get dementia like my poor mum and that maybe it’s started already and that’s all I can think about.

[SausageChipsandBeanz]

Exactly that.

My mum is now in the advanced stages of Alzheimer’s. She was diagnosed 8 years ago but was displaying some cognitive decline a good couple of years ago and tbh, looking back I think she had some issues for a while so all in all it probably started in her late 60’s/early 70’s and from all that I read about dementia the brain starts to show signs decades before symptoms show.

I help care for mum, it’s so hard watching someone you loved so dearly, someone who raised you and looked after you become like a small helpless child. She is now double incontinent and has to rely on family and carers to do most things for her (thankfully she can still feed herself but that’s about it).

I am 53 and have noticed that I don’t feel the same as I used to and am fretting this is the start. I acknowledge I am stressed, who wouldn’t be watching their beloved mum becoming a shell of a human being? I am also in perimenopause and that seems to have turned my brain to mush (can’t take hrt as it makes my endometriosis pain worse). I was diagnosed with inattentive adhd last year and research show this puts you at risk of dementia and I am also on low dose Nortriptyline for my IBS which is an anticholinergic drug and apparently this also carries a dementia risk - I feel my brain is doomed.

I try hard to look after myself. I’ve never smoked, never drink alcohol - I only drink water. I am slim, I exercise, walk the dog every day, do yoga/stretching. I try to sleep well as mum was a terrible sleeper and I sure that contributed to her dementia as it’s not in the family. I do all of these things but I still feel my brain isn’t like it used to be. I feel drained, I have lost interest in everything, wish I could learn and take in new things but my brain doesn’t seem capable anymore and all I want to do is just want to lay in bed. I can’t motivate myself to do anything, I feel kind of ‘spent’ as though I am done doing everything for everyone that I just want an easy life with no thought processes to deal with stuff but I worry this is all simply because my brain can’t handle or take on anything new because my brain cells are dying and plaque and tangles etc are building up. Why is my brain so wooly-headed and tired? Is this how mum felt? I can’t even ask her anything, she only says a few words now, she can’t hold a conversation.

I know that I can’t predict the future but I’m so afraid if dementia now - no I’m terrified actually, absolutely terrified. We don’t have dementia in my family, not to my knowledge so I knew little about this wicked disease but since mum’s diagnosis it’s all I think about. I certainly wouldn’t want a test to see if I will succumb to it but how can I shelve this thinking and feel vitality for the future and not darkness and worry?

It’s taking over my life.

I’m so sorry you’re feeling so stressed about this. Alzheimer’s is so awful - MIL had it.

One thing that struck me was your age. You’re just the right age to have menopausal/perimenopausal brain fog which you may be mistaking for the onset of dementia. I was similar, couldn’t even focus on books, but now at 57 am feeling more myself and out of the other side. You’re really very young to have Alzheimer’s symptoms, so it’s unlikely you do.

The other thing is sounds like you have pretty bad anxiety. You’re tired, stressed, sad, overwhelmed and frightened because of your mums condition and it’s possibly taking its toll. Perhaps mention to the GP?

Sounds like you’re otherwise healthy and looking after yourself, so you’re doing everything right. Keep looking after yourself. You’ll be fine 💐

I really feel for you, but what I would say is, that all that you’re feeling would be very normal given the circumstances of caring for and watching your DM succumb to this horrible disease, with the added fear and worry that you too will suffer the same fate. You sound very low and when we’re depressed it’s hard to find any motivation, or positivity and every day can seem like such an uphill battle.

I am the same age as you, and somebody very dear and close to me, bought a 23andme testing kit for my 50th birthday - what a great surprise when it showed up that I have a copy of the Apoe4 gene… You can imagine what I’ve gone through since. There were times when it was an effort to even get out of bed or just function thanks to the paralysing fear and thoughts of ‘what is the point. Like you I have researched, listened to podcasts to try and ascertain what my likelihood is of developing it is (neither parents developed it, both died around 80), and look after myself now as best I can; the smoking and drinking in my younger years is done and there’s nothing I can do about that now. So it’s just one day at a time, keeping myself busy, but of course I’m forever on alert, watching my every action and interaction, wondering if this is the start…

So I totally understand where you’re at OP 💐

Do you take HRT? It protects against Dementia (evidence based) as well as osteoporosis, heart disease, diabetes, cancers - Oestrogen is anti-inflammatory. It's in our 50s onwards that everything generally starts to go wrong without Oestrogen.

Edited to say: just seen you can't take HRT. It might be worth paying to see a specialist either in Endo or such as the Newson clinic - they also have lots of informative guidance, info and podcasts on the Balance website.

It may be that a low dose would be ok, or testosterone also helps & protects the brain too. Getting the balance right might make it possible - you had all these hormones in your for the last 30 to 40 years, so it should be possible.

Have you tried HRT with extra progesterone? I have stage 4 endo and have a mirena, then I use oestrogen gel and take progesterone daily

Also the HRT will help with your ADHD - again there is a brilliant recent Newson podcast on this & all the hormones can help. (I'm waiting for an ADHD diagnosis & then I'm going back to the Newson clinic to re-evaluate my hormone combination).

OP, you say it doesn't run in your mum's family, therefore there is no reason why you should 'inherit' it.

Take on board some of the advice about hrt etc, if you are able.

I think watching your mum get old and ill and passing away, in my case, has totally contributed to my health anxiety.

Your brain isn't how it used to be because you must be under so much pressure with caring for your mother .
With respect the person being cared for is often in a much better position than the family members caring for them.
My mother has alzheimers but thankfully quite stable at the moment, it's still quite mentally overwhelming at times thinking of the responsibilities involved on top of work ,family, home etc.
I don't know about hrt but i do know that you must prioritise your own welfare , perhaps its time to back off a little and get more paid care.
Make time for yourself and do what pleases you , and also rest.
I do have empathy for your anxiety, until now i hadn't thought much about dementia but seeing whats happening with my mom has made me have some very gloomy thoughts about if this were me in the future.
I think the fact that you don't have a history in your family , same as mine thankfully is a positive.
I hope you can find some peace .

Thank you, that's exactly what is making me fret, the fact I just can't focus on anything. I love reading too and have piles of half read books, half watched TV shows, projects and hobbies started and not finished as I have zero enthusiasm to finish anything. If I have any spare time I either just want to sit and listen to music, scroll Tik Tok/IG or sleep. I feel that my brain can't cope with any other stimuli. I truly hope it's simply stress and perimenopause.

And scrolling endless tik toks of people with early onset dementia (often in their 50's) really is not helping, I'm my own worst enemy.

I do have a follow up GP appointment this week.

I have stage 4 endo.

Take mini pill to stop periods and HRT on top has made me feel almost normal.

Plus: IBS symptoms almost gone since I started Mounjaro, as it slows down gut motility.

Not all these things will be right for you, but exploring your options further will help. Find an HRT specialist as a priority.

Thank you. I sorry the test flagged that up, it hopefully doesn't mean you will get dementia. I suppose it's the same for me, I could well have that gene too? Who knows.

As you say, all we can do is keep ourselves as healthy as we can and hope for the best. As my (non worrying) DH likes to tell me 'You could get run over by a bus before any other fate comes for you' lol!

I have seen a few menopause and endometriosis specialists and trialled several HRTs but they all made the pain worse so it was decided I'm best to stay off it.

Stop TikTok. Just cut it cold turkey along with all other social media that has algorithms and “shorts” don’t cave ever delete your accounts and block them on your devices. Your brain will feel awful for like a week but then it will start to feel better.

It is scientifically proven to mess with your attention span, and it will learn you “like” content about dementia and feed you more of it making your anxiety worse, which will increase the brain fog.

It might take some time but do things like jigsaws, sudoku, play online chess, paint or draw, learn an instrument, anything which stimulates your brain. Start with things which don’t take long and build up attention span for books again.

take fish oils and eat oily fish.

good luck, it isn’t easy.

I've tried all kinds of methods. I can't have a mirena as I had a uterine ablation 4 years ago and it's sealed up my cervix. Id have to have surgery to have it fitted then again to have it removed if it didn't suit me.

I've tried patches, pills, utrogestan and oestrogen gels but they all made the pain worse. I also have adenomyosis.

It definitely has. My poor mum not only had dementia, she has breast cancer, heart disease and is bent over with osteoporosis. She lived a really healthy life yet still succumbed to so many health issues, it seems unfair and has definitely left me with a fear for my own future.

We can only do what we can for our health but I think it's often just down to luck. Mum has friends who drank, didn't exercise etc and are still going strong in their late 70's/80's.

Thank you. I'm sorry you mum has it too. It certainly is draining on the outer circle, mum used to cry every day and say she wished she was dead which was awful but now she is in the late stages she has become very child like and is actually quite happy, which I do see as a positive, it could be much worse.

I have taken some steps back and because of her double incontinence we now have carers in which has taken the pressure off the physical load but as you know, it's the mental load which is a lot at times. I know there is nothing I can do about poor mum's health now, she is loved and well cared for so I do need to start prioritising my health I suppose.

I hope all goes well on your own mum's journey.

I do really need to put that into action. I do love TT and IG, they do make me laugh and offer some light relief but there is a much darker side to it all, I can be laughing one min, scroll and be in absolute tears the next. I need to stick to my favourite comedy shows instead.

If you can maybe watch YouTube long form clips where you have to manually select the next video? Turn off autoplay and avoid the shorts as they are really what mess with attention span.

Ive just lost Dad to dementia and cared for him until.the final 10 months. I know what you mean. I think part of our cognitive questionning is that our lives have been on hold and its been centered on dementia living - it sort of sends you a bit batty. Well, it has me! And it exhausted me - that didnt help. And I went out less and met fewer people. Again meaning my mind was concentrated in a dementia world - you have to meet them where they are at.

All I can say is try and make sure you get support and do as much as you can to escape the bubble. If she ever needs a care home that is part of releasing yourself back into the wild, although it never ends as the care homes call if there are issues and you will no doubt visit.

Take care.

Bugger. I have adenomyosis too but the extra progesterone seems to balance everything out

'I hope all goes well on your own mum's journey.'
Thankyou ❤
I know how this may sound but i do hope that something else gets my mom quickly before she gets as bad as it can be.
It is a brutal cruel disease and as you know you lose the person long before you actually really do lose them.
And so much strain on the family for potentially such a long time, that's why we absolutely must accept help and support and look after ourselves.

But how was your Endo pain before peri/ menopause? As in, with your normal hormones was it ok?

Yes that's the scary thing, its all down to luck in the end.

I totally understand, when mum was diagnosed with breast cancer two years ago I actually found myself feeling relief that something else would get her before the dementia but the cancer is actually well under control with drug therapy and the cancer has struck to almost nothing so it looks as though the Alzheimer's will get it's claws in to the bitter end.

I'm really sorry for your loss. It really is such a wicked disease and it does take everyone down with it.

I too have found myself just not wanting to go anywhere or see anyone these days and that makes my stress why I'm feeling that way and everything comes down to me panicking that it's the start of the demise of my own brain health.