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.

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.

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.

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.

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.

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

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.

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.

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

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.

Oh @BabylonianChild , that’s terrible!

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

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

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

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.