How to face the next ten years without getting really depressed about witnessing parents dementia deterioration?

It's an awful disease, with many awful moments towards the final stages, and I wouldn't wish it in my worst enemy.

However, it's not so bad for a few years.

Definitely funny moments too. My father lost his inhibitions in relation to suddenly being willing to talk very openly, after being a very reserved and private man. Going through old family photos with him dishing the dirt on everyone was an eye opener and hilarious (and solved an 'skeleton in the closet' that had confused and annoyed me since I was a kid).

He also very much stayed himself, polite and a gentleman, with a dry humour.

Even when he wasn't sure exactly who we were, he recognised us as people important to him, and was very happy to see us.

He took great joy in the family babies and toddlers. he'd always been a loving Dad and Grandad but in a slightly more stiff upper lip way.

It kinda relaxed him out of his more 'Victorian Dad' mode.

OP don’t despair. Try and make a plan for care of your mum. Don’t feel obliged to do everything yourself. Ensure she has carers and can attend a day centre. Do you have siblings who can step up? My stepfather had dementia and was in a home for the last few months of his life. My mum was his main carer before that and it nearly broke her.

I am over 60 now. I still work. I have also started an MSc degree part time. I am proud of my kids but I don’t live life vicariously through them. Life doesn’t end with a parent’s diagnosis or at 60!

I wish that we could have a discussion as a society about where we should be spending our money.

I know so many kids who are suffering because their schools are understaffed and the kids themselves are not able to access medical care or developmental/neurological tests that they urgently need, or mental health care when it all gets too much to bear.

I feel as though the NHS is throwing money at prolonging life, but seems to think very little about quality of life. I think it's what Wes Streeting meant when he said "Children are sicker today than the generation a decade ago. Adults are living longer, but falling into ill-health earlier in life."

I think that we need to think about this as a society. I don't think it's something the government or NHS can just decide for us.

What we wished we had done is some of the practical stuff asap, as when it gets harder its best to have the time to do more self care and not to focus on all the admin. So things like decluttering Mums house, getting important documents all in one place including utilities. Checking through her clothes, etc for hidden jewellery / money / house deeds before donating anything to charity - My MIL hid all of the above throughout her wardrobe. Research care facilities and charities you can access for support. If house is owned have a look if any maintenance is needed. And of course arrange power of attorney.

Then do a list for you - what relaxes you and what takes you mind away from any troubles. What did you / your mum connect over and concentrate any activities around that with her.

Sorry you have to face this OP.

I’m so sorry you’re going through this. I lost my Mum to dementia (and Parkinson’s) 8 years ago now.

I would echo others who suggested getting stuff like POA in place if you can. It will be much easier than trying to sort it out during a crisis. After dealing with that for my Mum I insisted my husband and I sort them for ourselves so no one else has to do it.

Also, I found therapy really helpful. It’s emotionally tough and having that space meant I was able to cope much better, was better able to enjoy time with friends, and just process the grieving that happens as they decline.

Is there anyone else who can offer practical support? We accepted any offers from neighbours etc, just to sit with her, especially later on. It was good to know she was safe so we could rest and properly switch off.

But, mostly take it one day at a time. Sad as that period was, and much as I would have given anything for her to be well again, I still have some lovely memories of my Mum from that time.

@olderbutwiser excellent response. It is always good to hear real life experiences on here. Thanks

Unfortunately until things are clearly futile medics have a duty not to discriminate against people because of age/mental status etc; and they tend to be distanced (hospital medics, GPs dont know patients etc). The people who have considerable responsibility for making these decisions are the family and loved ones, which is hard.

DFIL died very recently in hospital - the hospital were trying to beat an infection and at the same time he’d had a life-changing event that would have hugely reduced his quality of life. DMIL and siblings were just going along with anything the hospital said until DH (who is a medic and has LPA) said to stop treatment and put him on palliative care.

I have a nailed down advance decision - and I am hoping that sometime around 85 I will have the guts to stop all life-protecting medical treatment.

@RoundAgain without wanting to start a contentious debate the answer to your question is because euthanasia is not legal in the UK and ethics are very complex. The Hippocratic Oath also instructs clinicians to ‘do no harm’ and as death is final it is complicated by the fact there are modern medicines that can generally deal with most problems. My Dad has zero quality of life, he is not in pain and as such just is fading away very very slowly. It is horrible to watch. Also Harold Shipman.

I'm a bit confused about why the medics keep people alive beyond the point when they have no comprehension of what's going on. It's like they are maybe penalised at work if they let someone die, and aren't allowed to actually think about whether it's sensible.

when I get to 80 or at first sign of dementia I'm going to stop getting any flu/covid jabs nor do anything to prevent conditions that give a better way to go out than dementia.
You know my DM used to say this, but something seems to kick in to survive at all cost and override the informed plans she had made. I know how heartbroken her younger self would feel about her current state, in a care home and no longer knowing the names and circumstances of her family members, but she clings on desperately to keep existing.

Yes to the family photos and stories. Dm has alzheimers, and I wish I'd asked and listened more. I'd love to hear more about her early life and my own childhood.

Contented dementia by Oliver James is a good book to read to instill some hope.

Compassion in dying does a living will template which I used and gave to my GP

Personally things I wish I had done (I didn't get on with my mum so this might be a bit different) was ask about photos
We have a suitcase full of photos and my dad is "oh that's bill. He was a friend. I think. Or maybe a relative"
I wish we had gone through them and talked about who was who etc and family stories

Same. I’m 20 years in with my Dad, 5 years with my Mum, who has Alzheimer’s. Dad just turned 70, mum still in her 60’s. Both now not completely bedridden but very sleepy and on liquid diet. I don’t know how much longer it will continue. I google Alzheimers life expectancy regularly and wonder why the fact that “some live on for over 20 years” is written like it’s a good thing. I love both my parents but this is beyond cruel. Now MIL has also been diagnosed. 3 out of 4 of the grandparents. I hate it so much.

The upside, which I didn't expect, is that I'm seeing how much my Dad loves my Mum.

They were kind of crabby with each other when I was growing up, and now he guards her like she was the crown jewels. Which is nice.

Empathy. I’m a bit older than you, 60, and mum’s further along. Its depressing, frustrating, sad.
At only 50, some of your best years can be ahead of you. Get out into the world, make time for yourself. You’re as important as everyone else.

I'm in the same boat. My DM has dementia, and it's kind of funny talking to her on the phone, but when I see her in person I feel like my soul is dying. My Dad is doing all the caring but it is very hard for him.

At the same time my son is out of school with crippling anxiety and every day is a slog to try and teach him that the whole world isn't some massively terrifying nightmare, and that GCSEs/A levels/school/university are a good idea.

I'm 49 and have had chronic health problems for years, which are currently fairly disabling.

My MIL has cut us off, for complicated reasons that started before I met DH. My DH is off work recovering from depression which is related to all the above stuff.

Life just feels very fragile at the moment and I sometimes wonder what we are contributing to the world. At the moment the answer seems to be "not much".

My DS and I have talked about it and we agree with the OP that we'd rather die of something uncomplicated before we get to the point of having dementia. My DM had pneumonia a couple of years ago and DS and I both agree that if it was us, we would have taken the quiet way out at that point.

There's a definite feeling of "what is the point" in our house at the moment.

Lovely post.

It is really comforting to read the posts on here. Mum was diagnosed with Alzheimer’s last week and dad has had dementia for last 2 years. The future looks really scary, but glad to see there is some light within the darkness.

I wish I had your foresight, OP.
This is an excellent and positive mission.
You absolutely can be alive again.
With hindsight learning how to compartmentalise would have been key @VimesandhisCardboardBoots
Also having a repertoire of interests and sacrosanct events to plan around.

Practicalities aside she’s still in there. MIL has Alzheimer’s and while we’re mostly strangers to her these days she still knows us as nice strangers, and there is a very occasional flash of her wicked sense of humour comes through which is heart warming and amazing. Don’t take anything she says or does personally, try to be sing song happy even when your heart is breaking, for us it makes a huge difference to MIL. Roll with the oopses and the bizarre moments, and treasure the many happy moments you still have to come. MIL has no idea who I am, but if I walk in with a smile and say I’m putting the kettle on then mostly she lights up because I’m ‘the nice woman who lives over there’. Other days she scowls at me, and yes the bad days are grim, and I know our days are numbered, but she’s not gone yet.

Be kind to yourself. You’ll grieve in a way for losing her before she’s gone. Let yourself feel whatever comes. Don’t be hard on yourself for feeling upset, angry, hopeless. Work through those feelings. Some days they’re all you’ll feel but most days won’t be like that. There’s always someone around on here to give a hand hold without judgement.

Do you have power of attorney, both legal/financial and health and care? If not, now (immediately) is the time to get it in place, signed and enacted.

My mum has just died of dementia, after a seven year deterioration from diagnosis onwards. I would say that it's only the last two years that have been really tough times, and during those two years there was at least a year that was calm, settled and affectionate. Even this year, when we had a three-month stint in hospital where mum was really poorly and didn't always recognise us, and a short stay in a new nursing home at a much lower baseline, there have been real moments of joy and connection. She lived to see all but one of her grandchildren born and had cuddles with them two weeks ago.

I'm not saying it has been fun, or as good as life would have been without this bastarding disease, but there is joy in living and it isn't all depressing. Honestly.

My only real advise is to just have to take each day as it comes.

I help care for my 81 year old mum, she is 6 years into her Alzheimer's journey. It is bloody tough going, some days are hell then others are smoother going.

I am 51 and part of the "sandwich" generation as I still have teens at home and work part time. I am exhausted most days.

My only advise is to get as much help as you can. I have full POA, we have a carer come in once a day to help mum shower and mum goes to a day centre a couple of days per week (the day centre is invaluable imo).

There is no denying though that dementia is a wicked and evil disease, a disease I had given no thought to before mum's diagnosis but now I live in complete and utter fear of getting it.

I don't think 60 is that old. (I am 65.) My husband's father, who had dementia, died at the age of 97. Since then my husband, who is in his seventies has done a PhD, we've gone on loads of walking holidays, joined the U3A etc. Quite apart from the stuff we've done together the last 5 years have seen a certain amount of excitement for me. I've been on TV and in the newspapers, made loads of new friends and am currently learning a new language.

I do appreciate how tough it is with dementia. But there's a sort of funny side in with the tragic stuff. We also had a great GP and some other people who provided support - though looking after my father in law was certainly a responsibility.

No advice but I’m facing the same thing. I’m mid thirties and I’m expecting my Dad to get this diagnosis next week. I sway from feeling desperately sad to feeling grateful for everything he’s done and still does for me and my (very) young kids. I feel worse for them really as he’s an amazing grandad.

I believe in God and a life after this one though, and that gives me an immense amount of comfort and hope for the future.