To ask for positive dementia stories

[Doughnut100]

Surely there are some people out there whose parents got it, they took care of them and dealt with the whole situation, they eventually died, and it wasn’t utterly harrowing?

My mum has it. (We have lasting power of attorney, I know that’s the thing people always say you need.) She is not your average old person, she runs a business, has hobbies, more of a social life than most of my friends. She never sits down, never watches tv, always thinking, doing, opinionated as hell, won’t be told a thing. Already as mad as a box of frogs, never mind that she can no longer remember anything.

I’m just waiting for the sh*t to hit the fan and wondering if there is any way it might just be ok. Hoping she can stay at home without any major calamities until she’s bad enough to not really know what’s going on, then she will need a nursing home and hopefully there are nice ones out there.

Am I just in denial and deluding myself? Or has anyone experienced this and managed to get through it thinking it wasn’t the worst?

I am sorry in advance for your losses - I am asking people about their parents dying and I do not mean to be flippant about that. Really sorry if this makes anyone feel sad. I’m sad too.

Having looked after my DMIL fir 18 months in our home with mixed dementia, until we could no longer keep her safe, I feel I can comment that it is often a gruelling situation. While every situation is different, and there can be brief moments of humour and a glimpse of a fading loved one as they onvmce were, the stress is enormous by any standards. Essentially you have a fully grown regressing toddler and the point at which capacity is considered lost can also variable, leading to all sorts of moral, legal and ethical issues.

But aside from that, the push back from some regarding how brutal it can be and the relentless positivity is very undermining and somewhat patronising. It can leave one feeling that despite every effort somehow a carers exhaustion and distress is down to lack of resilience, and the distress at watching his DM decline . definitely contributed to my DPs escalation with alcohol consumption. These situations can cause untold damage to wider family and It smacks of toxic positivity sometimes, although it is often well meaning I know.

It's definitely a situation that until you're in it, you have no idea how it will go.

I have agreed with my adult son that if im ever diagnosed he will obtain enough drugs for me to finish myself off while I'm still cognisant enough. I would rather die like that than have my DS go through what we did.

For the record, my DP died in January 2022. My MIL lives on, unaware, as she stopped recognising either of us 4 years go. Bedbound, incontinent, medicated for muscle constrictilure, un responsive and non,,,- verbal. I now have full POA. Another small part of why my mental health is now in the toilet.

I’d like to come back on the never disagree with them stance.

My father has mid stage dementia. His career was quite stellar, and unfortunately his delusions are that he is off to such and such a board meeting, the airport or shareholders meeting. He will get up in the middle of the night, get dressed, and tell my mum he’s off.

He won’t be told. He wouldn’t listen if she says it’s not now. What do you suggest she do when he’s doing that other than talk him down and suggest he has a nice, retired life in his beautiful house with his wife of 50 years who he adores meaning he doesn’t have anywhere wise to go?

Please… I would love to know… so please advise…

All I know it’s heartbreaking all round.

I'd tell him that the plane has been cancelled and offer to help him to book another one in the morning.

@Possiblypossible - confabulation means that a dementia sufferer's brain fills in the gaps that have formed in their thinking/memory. So they effectively know something to be true because that's what their brain is telling them. Therefore they won't believe you when you tell them something can't be true - because they KNOW it is. All you can do is deflect/distract. Easier said than done when someone is trying to leave the house I know. Years ago my parents had a neighbour with dementia who would set off down the street in the middle of the night. His wife would ring my parents and my dad would drive past and casually ask if he would like a lift home. He always did.

I remember being with my mum in hospital when we were still getting used to the idea that she had dementia and her announcing that she was going next door to see her mother. My mum was 90 at the time and her mother had died when my mum was 30. 'Fortunately' mum had limited mobility by then so she couldn't get very far. I was totally exasperated but a nurse stressed the importance of not disagreeing with her.

I was totally exasperated but a nurse stressed the importance of not disagreeing with her

Yes.

Just imagine how you'd feel if your DD (and everyone else) told you that you were wrong about absolutely everything you said.

You'd soon get very confused and distressed.

Thank you for that information! I didn't realise the guidance had changed & I still regularly hear staff correcting patients that they are in hospital etc. I've even pretended to go downstairs and turn off a gas fire before so an elderly man could settle and go to sleep! So glad this is now being encouraged! So much nicer for everyone involved!

My father suffered from vascular dementia - I was told not to contradict or correct ( his main delusion was forgetting that mum had died the year previously ) as all it did was cause distress .

Once, when my MIL could still have outings from her care home, we had a family get together at her sister's house. She barely knew who were were, but was reasonably comfortable and happy in our company.

Suddenly, out of nowhere, she asked me where my late husband, her son was. Or at least "where... where that man...? ....your man?".
I was taken by surprise. She'd not mentioned him for a couple of years and we assumed she had forgotten his existence.

Because I loved and respected her so much, in that split second I felt unable to lie to her, and gently told her that he'd died. It was a huge mistake. Her eyes filled with tears and she looked distressed. And everyone else in the room looked at me like "what were you thinking?"

If I'd known the question was coming, I hope I'd have responded differently. But it's so hard.

@Doughnut100 @EllieQ s list is full of wise advice but I would 100% emphasis this one

Lots of people will tell you about wills/PoA but this

• Check important financial info (for both parents) and that you know as much as possible about their finances and where key paperwork is kept (maybe make copies/ take photos).

is VITAL and I'd recommend it to any one with aging parents even if they are both fine mentally. It is fairly typical for one person to deal with finances and if that person dies suddenly (or becomes mentally unwell) and there is a survivor who doesnt have the vaguest idea how many accounts there are inc savings or investments or ISAs and pensions, which of the bills are paid by Direct Debit or not, whether there are credit cards, how many, whether they get paid by DD or have to be paid manually it is a tough additional problem for a surviving child to deal with.

@NotAClueZ - that's such good advice. When MIL died a couple of years ago DH could only find a copy of her will and not having the original caused a few issues.

At least my parents' generation had hard copies of most things, but I'm very conscious of the fact that we do so much online now. DH tends to sort out stuff like car/house/pet insurance online; whilst I tend to do online banking.

I've started compiling a list of what accounts, policies we have, where our wills are etc to make it easier when one/both of us die.

You can still have little moments that make you/them smile but there is no happy ending and the journey to the end is just horrendous. I wouldn't wish dementia on my worst enemy.

We're currently dealing with trying to distract my 90 year old mother in law from being totally heartbroken that her Mum didn't visit her on Christmas Day. Her Mum died 35 years ago....

When she is finally released from this devastating illness it will be a relief for us all.

Yes. This.

No even to do with Dementia, everyone whatever age.

My Dad died suddenly and was the person who did all the bills and finances. I had a nightmare sorting it all out for my Mum and putting it in her name.

Do it. Do it now as you never know when you'll need it.

Re - POA etc:

I've made a folder for my children, with all pertinent documents and information in it, for my children.

We've both written wills.

Am currently sorting out POAs. It's not the same in Scotland though, so it's annoyingly complicated.

This is because I don't want my DC to struggle with this stuff if we lose capacity or die suddenly.

A couple of other things if the person with dementia suddenly starts becoming odd like shouting at people who aren't there or I'm my DMIL's hostage ( let me int the room but wouldn't let me leave ) get the checked for a UTI.

Secondly my MiL recognised me to the the end in that she recognised me and knew my name but didn't realise I was her DiL in fact one day she told me how wonderful her DiL was.

@Possiblypossible I'm sorry it's so tricky with your Dad. With my mum the best way we found was never to disagree or say she was wrong. Your mum telling your Dad he's retired is true, but to him it's nonsense as his need to get to the conference is very real, so it's bound to just wind him up further. As others have said, she could say plans have changed and he's now leaving in the morning, or that the taxi's delayed and there's time for a cup of tea. With my mum, we found the act of moving to a different space often helped, eg: once he's in the kitchen, your mum could ask him to do a task like putting the kettle on (if he's still capable obviously!), or even just finding a teaspoon. Distraction works as the person will often forget whatever it was that they thought they needed to do. It only works when they're calmer though and obviously that's very hard in the middle of the night when your mum's tired. 😕

@Doughnut100 - there are some positive stories in this article about caring for a parent with dementia in today's Guardian

https://www.theguardian.com/lifeandstyle/2024/jan/08/i-wouldnt-have-missed-it-for-the-world-10-things-i-learned-when-my-father-had-dementia?CMP=ShareiOSAppp_Other

My nana is 86
And has dementia

Her dementia has progressed a lot lately.

Shes happy in the moment though - so grateful 4 that

My DM (dementia) in her late 80s went through a phase of wanting to go and see her parents ‘because they must be getting old and could do with some help’.

By then I had learned the hard way that telling the truth was useless and probably very distressing, not to mention that it’d be forgotten so soon anyway.

So I’d say e.g. that I couldn’t take her today, because my car was being serviced/the roads were very icy/closed because of a bad accident, but, ‘…maybe we could go tomorrow?’

That always kept her happy (or as happy as she was ever going to be) for the moment. And her short term memory was by then zero, so I could recycle the same excuses ad lib.

From the Guardian piece, this:

"Until my father had dementia, I had been lucky enough to not have to acknowledge that there is a secret world of carers (professional and unpaid) dealing with difficult and stressful situations every day."

is very odd.

Not 'hadn't known' - which would show a striking level of obliviousness and self absorption, but is just about believable. But 'have to acknowlege' which suggests knowing but deliberately ignoring - and thinking that's a reasonable (even a good) position to take.

Weird.

I don’t find that odd at all. Until we first had to deal with dementia (FiL, followed not much later by my DM), dh and I were utterly, blithely clueless. ‘Just getting a bit more forgetful - how hard can that be?’

I dare say that’s what a lot of people think - until they’re living or coping with the daily, practical realities.
So many people only learn the hard way.

I might add that some professionals, who may very well have had some sort of training, will still have no idea of the practical realities. Why else would a GP or social worker say, ‘Well, if she can’t remember to take her medication, you could always write it down for her. Or phone to remind her.’

Absolutely no idea of what short term memory loss so often means in practice.

She didn't say she had no understanding of the reality of dementia, though. That would be completely reasonable.

She said the she had not previously had to acknowledge that there are carers doing stressful jobs. Not knowing the details of those jobs is one thing; turning a (deliberately) blind eye to the fact that they exist at all is another.

I think you're being quite literal minded there.

Before my dad required 24 hour care and spent some time in nursing homes I hadn't really acknowledged or engaged with what it actually entailed. I knew people provided paid and unpaid care, I acknowledged that it was sad and must be really difficult, but I didn't spend huge amounts of time thinking about it until it happened to my family. And then I needed to think about 4 times daily visits, the washing, the changing, the feeding, and the actual reality of people's lives up and down the country, in a way I hadn't before.
If a difficult situation doesn't affect you personally it's human nature not to spend time dwelling on it. I took that to be what the writer meant here.

Same way I read it. There's knowing about stuff and then there's experiencing that stuff. What you might have thought about it up until the point of direct experience is meaningless. I, like most people I imagine, had committed about "I hope I never have to do that" amount of thought to the practicalities of caring for an adult sized baby and I don't really believe anyone that says they've given it any meaningful thought if it doesn't apply to them. You definitely give it much more thought when it looks like it might be the next 10 years of your life anyway

If a difficult situation doesn't affect you personally it's human nature not to spend time dwelling on it. I took that to be what the writer meant here.

That was my take on it too. I mean, I have a DS who was fairly recently diagnosed with Crohn's Disease. Before that, while I might have been aware that it must be 'pretty awful' to deal with, that was the sum total of my thinking on it. I'm now very up close and personal with all the daily delights of bowel movements, bleeding, cramps, exhaustion, colonoscopies and possible future surgeries. But only through experience of caring for my child. It was the same when my mum got Alzheimer's. A very hands on fly-by-the-seat-of-your-pants education for me!

My mother was diagnosed with Alzheimer's last year, but there were definitely signs before 2020 that were then exacerbated by lockdown.

Some positives:

1. She's much kinder to us. She was always judgmental and comparing her life or her children's lives to others' in a bitter way. Like she was always expressing passive-aggressive 'sympathy' for me that I live in a city or that I hadn't got married in church (both of which are very much my decisions).
2. My father, her husband of almost 60 years, died recently and she doesn't seem much fussed. He adored her right to the end, unhelpfully so since he hid lots of her deterioraton from us, and would have been devastated had she gone first. She just took in her stride.
3. Despite being near immobile, she's pretty happy. She loves eating and online shopping. After a lifetime of dieting and a complicated relationship with food, she's stuffing her face with as much sweet food as she can.
4. She's not in any pain nor does she rail against her situation.
5. I can now spell Alzheimer's.

She can afford to pay for her to have a live-in carer, though not indefinitely. It's depressing that just one year of care fees would massively help one of her grandchildren get on the housing ladder, especially since it's not money she earned, but we're so lucky that she's able to do this.

At the risk of sounding like a heartless bitch, the idea of this going on for another decade or more, as it has for so many PPs, is depressing.

There are many many negatives, not least my inability to distinguish between what was the undiagnosed illness and what was her just being selfish and uninterested in my children for the decade before diagnosis. It makes it hard for me to access the compassion that I need, especially since she showed precisely zero towards my dad.