Dementia- what had you wished you’d known?

Honestly it doesn’t sound like she has capacity to grant POA.
she had to understand it and make a free choice of attorney. Doesn’t sound like she can to be honest and therefore it won’t stand.

there is also a lag time 12 weeks maybe ? Which a person needs to retain capacity before it becomes registered.

you may be dealing in with the court of protection im afraid.

Agree with so many PP, sundown syndrome, lack of recognition of household cleanliness etc

I would say, bring in help before you need it, we introduced a career fairly early on as a friend of the family, who would come and have coffee each week, so when we needed to step up visits it wasn't a shock

Routine is massively important- after a few disasters we learnt holidays etc were not worth it

And take care of yourself, it's often a long haul

I would say that you are doing one for yourself, would be a good idea, for example if she got knocked over by a bus, someone could deal with everything for her till she was able to look after it herself again.

You will have to find someone to certify that she understands what she is doing by giving Power of Attorney

Hello. My mum is awaiting an MRI to confirm vascular dementia. She can hardly walk, didn't engage in conversation unless you ask her a question and has just changed so much very rapidly. How do I ask her to agree to Power of Attorney? Without upsetting her as she just doesn't seem to understand what's wrong with her, it's so helpless and sad xx

Oh @BabylonianChild , that’s terrible!

I wish I’d known never to use the word Dementia to the afflicted when talking to them.

It led to my dad telling me I was dead to him and that was the last thing he ever said to me.

I'm finding the book Contented Dementia by Oliver James incredibly helpful.

Keep a close eye on personal self care. My mum got a few horrendous skin infections in her feet and legs partly due to poor hygiene.
Also that putting them into a nursing home when they've become a danger to themselves is nothing to feel guilty about. My DM positively thrived there particularly with the activities and lots of different people coming and going. We were so happy (and relieved) to see the improvement in her general outlook in life and energy levels - at home she had got to the point of doing very little apart from getting up and dressed then sleeping in her chair and going to the loo. I think the sheer effort of trying to keep up appearances (even when it was at the stage of me going in and helping her get up and dressed etc) was completely exhausting her.

Honestly as brutal as it sounds, the thing is wish I'd known was their opinions on resuscitation, withdrawal of care, and places like dignitas.

Having been through it once I won't ever again.

I absolutely agree with getting a power of attorney- NOW. Not just for medical things, but financial also.

In hindsight, I wished we'd employed a cleaner much sooner- to give my mum a break.

I also wish we'd moved nan to a care home sooner- to get her used to the layout and be more familiar with it and the staff- before she declined further. Also- by that point- my mum was visiting daily, emptying a commode, doing all the washing and cooking and helping nan dress etc.

Whilst still living at home, nan ended up with a UTI and in the middle of a winters night, walked barefooted in a summer nightie, up the a neighbours house. She asked them for a long ladder because she thought her daughters (in their 70's) were playing on the roof! She developed pneumonia and we thought it was the end.

People worry that relatives will decline in a care home, and obviously some are better than others, but my nan lived for another 5yrs there and died at 102.

Age UK or some of the dementia specific charities could provide more advice too

Music is a really positive tool to use with people with dementia - the brain remembers songs and melodies even when it's forgotten everything else. Also pet therapy - real animals, or in later-stage dementia stuffed animals. You can get clever 'toy' cats that move and purr, they can be a source of comfort to people who stroke them and think they are real. Also some people with dementia find dolls comforting.

It is very sad but people can go back through their lives until they are a child again. You have to deal with who they are in the moment, not who they used to be.

We've had 2 family members who developed dementia - it's heartbreaking.
Make sure POA are in place to ensure any bills utilities are all paid up-to-date.
Agree with any confabulations they come up with. "What did you buy this morning then?" - in response to a totally bedbound aunts' "recollection" of her trip out to the shops that morning.
Or when she'd forgotten her DH of over 60 years, brother or parents had died just agree "you havent seen them today? They've probably just popped out to do some shopping/gone for coffee and will be back soon". Don't argue for the truth - it'll just repeatedly upset them as they won't remember.
When reading became too difficult, favourite old music and films on a portable dvd player were a firm favourite. I was very surprised that DM could still sing along to the notes of a favourite old tune despite losing her speech.

My m-i-l used to work on a geriatric ward, as a ward clerk, and mostly the patients didn't interact with her very much.

Then, a patient was admitted one day, saw my m-il, and called her over (in a loud, clear voice) 'Umm, Miss! Can you come over here, please?'
So, over she went, and asked 'What can i do for you?'
He said 'I'm going to Germany, so I need you to book me a flight, hotel and hire car'.
She said 'Right-o, i'll get that sorted for you'

He thought she was his secretary, so asked her the same thing each day that he saw her.
She just went along with it. He wasn't doing any harm, bless him.

It sounds daft, but I bought a few old copies of the Radio Times from the 60s from eBay.

My father in law loves them. He just leafs through them and enjoys the adverts, etc; and we have a little chat about the programs.

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.

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.

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. 💐

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

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.

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/

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.

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.

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 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.