Dementia- what had you wished you’d known?

[baffledcoconut]

Just that really. We’re new to this with a parent and it’s so draining and sad. What helps either the sufferer or the family? It all happened so fast but there were signs for a couple of years if you look back objectively.

I'm sorry OP. I'd say keep a close eye on the cleaning- my Grandmothers housekeeping went very downhill quite fast and it was a godsend arranging a cleaning service for them. She didn't seem to recognise anymore when things weren't safe to eat.
Try not to take any aggression personally I think the confusion can make the sufferer seem mean sometimes if they are scared. If they are having harmless misunderstandings we didn't use to correct them as this seemed to upset them.
If a conversation is going badly try talking about the past. My Grandmother had great memory for her early life even when her current one was all messed up in her head and talking about things from when she was young calmed her.

Be aware of sundowning. It really is a thing. And you can mitigate against a lot of it. My mum would go batty after 4pm. We had lights on early and encouraged her to sit in the same place every meal time - and kept things as cal as possible.

^ calm

and we also got her out and about as much in the daytime as possible. Apparently that helps to regulate the mood.

How powerful music can be

Look at belightcare on Instagram she’s a speach and language therapist specialising in dementi and covers lots of topics and has lots of advice and tips on supporting people with dementia.
on a personal level I agree with the pp on how therapeutic music can be. Also just go along with their thoughts acknowledge and redirect/distract this is where music really helped my granny. Find your local dementia groups and get them attending thy may hate it the first week but the socialisation is such a positive for their mental health. Get them involved in meaningful activities as much as possible they use a lot of Montessori based activities to promote/maintain independence.
medication can be very effective
problems with continence can often be down to constipation make sure they are drinking plenty and going regularly

Don't sweat the small stuff. No need to correct them if they say or do something wrong that's irrelevant - you just cause them more confusion and stress. Far easier to smile and agree.

Keep things the same, they need routine. We used to take our mother away with us for days out, short breaks, even 1/2 week holidays when she first started with dementia and she managed fine, just us having to keep reminding her where we were, what we were doing etc. A couple of months ago, we took her for a 3 night short break just a couple of hours away from home and she was terrible - she kept asking where she was, was it our new house, even getting her house keys out of her handbag as we were parking up outside it, prowling around half the night looking for the loo (her room was ensuite!), refusing to eat, refusing to wash/bath/shower. It was a nightmare. Never again. Literally the moment she walked through her own front door, she was back to normal again, completely forgot about going away, couldn't remember anything about it, thought we'd just been shopping (which she's used to doing every week!) and wondered where her shopping bags were. Such a shame, we thought we were doing the right thing but she's got to the stage where she can't cope with anything different.

My mum is, at times, unkind in her confusion. Goes straight for the jugular in terms of saying things she "knows" will hurt the most. Except she doesn't know....she has dementia. But then I doubt myself and wonder if that's how she felt or what she thought all along and she was only being polite? I wish I'd known to develop a thicker skin, sooner.

That self care is important, its very easy to get caught up looking after and advocating for the person with dementia and forget to take time out for yourself

This is so true

Just keep reminding yourself anything unkind that's said is the disease talking not them

That its easier to just agree with them. They went with Betty next door to the moon and they had lunch? Sure, makes total sense. Frank Sinatra came in to visit them this morning? Oh really! How is he doing these days?

I was lucky that my relative didn’t have the aggression or forgetting our faces that so often comes with dementia. She was just living in her own world. Sometimes I wished I could live in it with her. Things seemed easier there.

That balance can become affected. That nighttime waking is common and then nobody else sleeps well because they're worried about not hearing the person getting up. With the nighttime waking you can fit an alarm next to the bed that will silently alert the carer/spouse that the person with dementia has got out of bed. So they cam sleep easily the rest of the time.

Sort out Power of Attorney if you haven't and you still can - both Finance and Health and Welfare ones.

Buy things to help and make things easier - Rosebud clock, Pivotell tablet dispenser, Alexa Show, Whiteboard with calendar on, dementia puzzles etc

Any trips/treats that your parent might want to do. We left this too late and now my DDad is in a care home I often think that I wish we had done xyz

If appropriate get a carer in a couple of times a week before it's necessary, so they get used to having someone else around/helping.

Consider applying for Attendance Allowance, Council tax reduction, blue badge, access schemes for cinema/theatre etc

Look for local carers support groups. Contact your GP and ask them to register you as a carer on your NHS record (this provided earlier access to covid vaccines for example).

Things I wish I had known are (1) that there was no point in arguing with my mum, when in early stages she told me she still did all the cooking, cleaning etc

And (2) that having gone through dementia diagnosis with my mum, to realise that it presents differently in different people - so just because my dad was able to cope with doing things my mum couldn't , didn't mean that his other odd symptoms weren't dementia.

Looking back, I wish I had been kinder to my mum and understood how frightened she must have been instead of getting so frustrated with her .

I don't know. Mum kept all the symptoms well hidden for at least 3 years, based on "in sickness and in health" and wifely duties etc.

I wish I knew what dementia felt like. I did my best, but I'll never know if he needed me at the end or wouldn't have noticed. I wasn't there.

Repeating others here, but agree that is much better to go along with whatever they are saying rather than constantly try to correct them.
It doesn't matter if they think they had something for dinner that they didn't have, or they forget someone has died, or they think it's spring when it's autumn. Just go along with it and use distractions when necessary.
(Eg, my grandma used to forget grandad had died and would ask where he was - when reminded he had died she was upset, when we said he was at work she was fine)

I know that you're right. Of course I do. And yet - sometimes I struggle with this. When she's so specific in her venom ...about life choices I've made, about my children's partners, about their qualifications and their jobs etc. It's like she's been given free rein to say all the things that were always in her head but society wouldn't have approved. And then I gather myself, and rise above it....until the next time. But I think that I can see her begin to lose the ability to have these "rationally irrational" explosions of thought, and that's both a source of relief and sadness.

That it’s easier to just agree and go along with what they’re saying at the time.
If you can manage to get Power of Attorney set up do it if parent isn’t fully lacking mental capacity.
Try and look for day centres to provide some respite.
Anything unkind isn’t them talking it’s the disease.
They will have good days and bad days - the good days can trick you into thinking things aren’t too bad.
Music and talking about old times, old photographs help so much.

Be really alert to UTIs - they will stop wiping/cleaning as well and may get prone to these. Plus a UTI will increase the dementia symptoms so you want to stop asap. We eventually got prescribed long term antibiotics as a preventive. If your parent is female, be really alert to any vaginal bleeding - my Mum had vaginal atrophy which we managed to get treatment for. Breaks my heart the number of demented women who may have it and be in pain.

Really try and ensure the eat enough - we used fortisip and made porridge with it and protein powder and gave at least one whole fotisip a day. Also ensure they drink enough - they will often try not to as get embarrassed at having to be helped to the loo. These are great www.jellydrops.com/

Appreciate the things they can still do and not just focus on the things they can't. At some point, your family member may not be able to speak or recognise you and you will wish you could go back a year or so when at least you had some connections.

On reflection, what age do you suspect was the onset of the dementia?

Thank you for all the lovely and kind messages. It’s an absolute fucker isn’t it?

Looking back it could easily have been brewing for 5-10 years. But where does general ageing stop and dementia begin? I guess there will always be the what if’s hanging around.

I do wonder if the things being said are true thoughts just without a filter and I’m struggling to really like them right now.

The cleaning issue is real- but apparently they are both coping fine. I strongly disagree but have no idea how to even tackle that.

Thank you all. Right now I feel I could run away and never come back. But I’ll keep doing my duty and hope for the best.

What @Neolara said. I’m Currently dealing with my uncle who is very poorly. He’s in end stage dementia, he’s lost all communication skills, and personal care is just not there. He’s in a care home, bedbound now and doesn’t even know if someone else is in the room with him. He is a shell of the man he used to be. Be aware of physical symptoms too. End-stage, he sleeps a LOT and can’t swallow so is on a liquid diet, so has lost a lot of weight. He also struggles to open his eyes. He caught covid in March, but in reality any infection at this stage means a rapid decline.
Things that helped him in the early days were visual things when he lost his speech he could point to things instead. Can’t do that now alas.
Honestly it’s a tragedy, but my uncle has already gone, it’s just his heart that’s keeping him going, which is ironic as he was a HEAVY smoker for years. Definitely makes the case for legalised euthanasia. It’s no life at the end-stages. It’s heartbreaking. 💐

The most important thing is to get Power of Attorney sorted while your parent still has the capacity to consent. This will allow you to do things like deal with doctors and pay for things and make other important decisions. Make sure you file the papers asap.

And, please try to enjoy the things your parent can still do and do them together. I think we were so blindsided by the huge loss in capacity that we did not take enough time to enjoy what we had because we were so focused on what was coming next. We should have done more things that she liked while she still could.

Don’t argue or try to correct. They’ll not believe you, and it’ll just upset them.

search out for and appreciate the signs of the “old” them

Get in as much help as you can, save yourself for the stuff they only you can do.