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.

Oh we don’t have a diagnosis. I haven’t managed to get her to a GP. I never really tried to be fair. I thought the knowledge would be more upsetting while she can still understand. And she won’t want to take the drugs anyway. I know that’s not what most people would agree is best.

I'm glad you posted this as you will have a bigger range of experiences than most people. I agree I don't think there are positive stories unfortunately. It's heartbreaking as you go through grieving the person they were whilst they are still alive.

I'm so sorry op it really is tough. You can read all the books and still never know what's going to come next. It is good that you have an early diagnosis but IME with my grandad, there will be a lot of denial coming your way.
If you can speak to people who've gone through it you can try to be ahead of what's to come but in reality you never really know what's around the corner

My grandad went into a care home each time he had a decline (usually following a UTI) until the house was safe for him again to be discharged. My gran totally refused help from carers etc as she wanted to care for him herself. I can see why she wanted it like that but it made everything much harder. ESP since he had Parkinsons too and was supposed to live on one floor of the house but instead she took him up and down the stairs and couldn't manage when he became incontinent. If I had to go through it with him again and had the power to make decisions he would have had all the carers offered, accepted all the help, been more honest with social workers/doctors and all advice followed re living situ

It may be a long journey, it may not. You really can't know until there's a decline.
Im sorry, wishing you all the best x

First thing to note is that different types of dementia are different and coping with them is different. For example, Alzheimers patients tend to retain their true personality which (if it was nice) is a huge bonus. Vascular dementia can be more brutal and have severe consequences in terms of not just personality change but smearing shit on walls, throwing it around, that kind of thing.

Second thing is that the only really positive thing you can hope for dealing with dementia is one to try to slow the decline for as long as possible and keep them stable for as long as possible (medication, exercise, their own home with a familiar environment all help).

Third thing, its that as it progresses it becomes harder because you are dealing with loss on a daily basis. However hard it was today, you will look back in six months and think that was a golden time because then they could still read/use money/recognise their friends/use the telephone/use the toilet unaided/were continent/ eat normal food/swallow. It teaches you much about being grateful for today and what love means.

The residents in my late MIL's nursing home mainly had high needs dementia. I'm sure they were all difficult in different ways, but a notable few seemed mostly good-humoured and content, even when they weren't making any sense. Which was pretty much all the time. (We were frequent visitors.) That's probably the best you can hope for.

@Doughnut100 she - and you - need a diagnosis. Really. Its time to face the music, for her safety, your sanity and the safety of other road users.

Do they offer medications for it now? My relative certainly had never had them.

While your mum has capacity to agree to medication or not that's her choice.

But a diagnosis will give her greater control over what happens, even if it feels like the opposite at the time.

The way dementia affects people varies hugely, as well as how fast it progresses.

I am not denying that later stage dementia can be very challenging but it's also possible to live well with dementia particularly in early/mid stages - to be sociable, to take part in activities, to maintain independence. Look up Wendy Mitchell, who has lived with dementia for maybe 10 years and has written about her experience.

Do they offer medications for it now? My relative certainly had never had them

Medications have been available for nearly thirty years. Some are more successful than others.

None of them really do much in the later stages.

"Mum, if you don't do x/y/z we will need to put you in a home, no one wants that, do they? "

That is a fucking awful thing to say to someone with dementia. Imagine just dangling that power in a persons face who had no control over their mind
Disgusting. They should be ashamed

Example - I was told at the dementia clinic a way to help support my grandad was accepting that he was seeing men on the roof and also telling him 'I can't see them but I know you can't etc.
Not outright saying 'there's nothing/nobody there'
His biggest fear was being out in a home and forgotten about so I could never threaten anyone like that. Absolutely awful.

Thank you for all your messages. I have a baby and a toddler and I’m struggling as it is. I live two hours away from my mum. This is so hard. I need to get up early and I’m lying here crying so I need to stop and go to sleep.

So sorry about your Mum OP.

My Mum had Alzheimer’s, Dad had vascular dementia, and I was alongside my DBro and SIL supporting her Mum through Alzheimer’s.

All 3 of these stayed in their own homes, lived until their 90s, died knowing who everyone was and where they were.

It isn’t one illness, the effects are a lottery depending on which bits of the brain are affected. Tragically for my Mum, though she could have nuanced and reasoned opinions her language went. She couldn’t make the words she wanted to use come out of her mouth.

The ability to follow processes went, how to use the remote, cutlery. Memory was disordered. But all 3 retained pleasure in being with family, listening to music, going for a walk or a simple outing.

My parents eventually had a Live in carer, my DBro’s MIL managed with private visiting carers 4 times a day and a lot of support from family (they had webcams in all her rooms and lived nearby).

It wasn’t easy, but in terms of what dementia can be, it was easier than many.

I recently read about Dementia Villages https://lottie.org/dementia-support/what-is-a-dementia-village/

Just wish we had these in the UK!

I despair.

Unfortunately we weren't involved in my relatives care in the early stages.

Oh love, I'd give you a hug and cuppa.

Do you have any siblings, aunts or uncles who can help with your mum?

What about someone who can look after your children for a while if/when you need to concentration on your mum?

I am so sorry you're going through this. Ultimately, its easier to deal with this head on earlier than it is later.

Not a relative with dementia, but I used to work as an activities organiser at a nursing home for people with dementia.
I loved that job, and I loved the residents there. We worked really hard to keep them safe and happy. The care staff would look after their day to day needs and my team would make sure that they had things to do and people to talk to through the day. People worry so much about putting their relative in a care home, and they do vary enormously. But the place I worked was lovely.

I know. Nobody “allows themselves” to deteriorate. Dementia robs them of everything that makes them the person they once were. It’s a vile disease and it’s worse for the family than it is for the patient. I wouldn’t wish it on my worst enemy. I’m sorry @Doughnut100 but there’s nothing positive about it. It’s a living death.

This.

Every time I think I've thought of everything, turns out I haven't.

It's soul destroying, but my mum remains blissfully unaware of the risks she's taking.

Being forgetful is nothing to cognitive decline.

Op, it's worth seeing what local support there is for your mum to help her live as well as she can. Speak to the Alzheimers society, also worth checking out whether there's any meeting centres near her: https://meetingcentres.wordpress.com/locations/

Not exactly the same, but there are dementia care homes which are set up to allow more ‘Independence’. The one near me has a cinema, a hairdressers, a shop, a cafe. In the garden there is a shed that they can potter in. There’s a little road with a bus stop and a bench that people sit at and chat. The building is secure, so residents are allowed to wander, but it is circular so you never come across an obviously locked door.
Expensive though!

This thread makes hard reading.

Both my parents are in varying stages of dementia. Can I ask how long the decline is likely to last before the end?

I am currently considering the different care options and permutations (depending on which parent goes first). In addition to legalities.

The only positive I can think of is that I managed to keep my mum in her own home, which was what she wanted, despite being desperately lonely. I was her main carer and there were 4 visits a day from a care company for washing, dressing, changing incontinence pads etc. But it was more stressful than anything I have ever experienced. There were endless crises. Phone calls from her, from the carers, from the company that monitored her pendant, at all hours of the day and night. Massive overnight drop offs in her capabilities. For example, one day she was able to make her own porridge, scrambled eggs and microwave meals and the next day she forgot and never did it again. I loved her dearly but it was a living nightmare and I never want my children to endure similar. Horrible, horrible disease.

It wasn’t so bad for my uncle, OP. Obviously not good, but not awful.
He didn't get angry or aggressive. He became childlike and passive and ‘meek’, always very polite and grateful for everything to the very end. By the end of his life he was very confused and became upset / scared but could usually be comforted with stuffed toy animals.
He went to a nursing home but seemed to think he was in his childhood home most of the time.
Sending love and hope to you OP that your mum’s decline will be as peaceful as possible.

I would be very interested to know what makes you think she has dementia, in that case?

My heart breaks for your Gran reading that. 🥺 What a woman 💐

Nobody “allows themselves” to deteriorate. Dementia robs them of everything that makes them the person they once were. It’s a vile disease and it’s worse for the family than it is for the patient. I wouldn’t wish it on my worst enemy. I’m sorry @Doughnut100 but there’s nothing positive about it. It’s a living death.

I think this is a bit too far the other way tbh. As others have said, it is possible to live well with dementia for prolonged periods - years even post diagnosis - depending both on the person and the type of dementia diagnosed. As I said above there are things that you can do to support your loved one to delay the decline - how effective they will be or can be will depend on many variables but things that can affect quality of life for the better include:

-type of dementia suffered. .It's all difficult of course and horribly sad but some are easier than others to manage. Ability of patient to know and recognised loved ones for example survives in some forms of dementia and this makes for a much better quality of life both for them but their loved ones too.
-general nature, personality and compliance of patient
-how advanced they are when diagnosed - the earlier the better, too many people wait too long
-whether they have a type of dementia that is amenable to medication (most medications slow the decline which can last a long time and be a huge boon to retaining quality of life
-accessibility to medication (we ended up with a private prescription which was expensive but very very worth it, were told we would never have been given this on NHS due to budget cuts)
-regular exercise helps if they have the ability to do it
-maintaining hearing - this is very important, get hearing aids as soon as any indication of impairment and also get ears checked regularly for wax clearing.
-established daily routine - certainly for Alzheimers this helps a lot
-familiar environment (won't be suitable or possible for everyone but if you can keep a person in a home they've lived all their life, this will really help if it is manageable and safe. if you know you can't keep them at home, then moving to their long term residential plan earlier rather than later is a good idea)
-socialising and personal interaction especially with people they recognise and know love them.

I work in aged care. Are there "positive" stories? Well, it's always very upsetting for the families, to see their loved one slowly 'disappear', but yes of course there are many residents who have transitioned smoothly into care.

As far as not being any "major calamities" though... honestly this is less likely. Our new admissions usually have come to us after an event, most common examples are a bad fall with fracture, being picked up in their pj's by the police while wandering in the middle of the night, becoming accusatory to their neighbours (usually about stealing), becoming aggressive toward their family, kitchen incidents (leaving hotplates on etc), an illness like pneumonia, or because they've denied all assistance and have been found to be living in squalor and are malnourished (this is sadly very common).

Reading about your mum's personality... of course it could be fine, but honestly I'd just prepare yourself. If she's fit and active, I'd be worried about her wandering. Also the kitchen incidents. Does she still have a business or is it closed? Money could be at risk here, as well as customer relationships. Her friendships too; she may alienate herself and cause arguments.

As far as coming into care, we've had many a resident become very angry and upset that their families have "thrown them into a nursing home", usually accusing the families of not loving them, or trying to steal their house. Almost all of them settle eventually, but it's always very difficult for the families to listen to that. A few ways this has been dealt with... family not telling them, and just letting patient transport break the news when transporting them from hospital, and instead of going home, they drive to a nursing home... God don't do this!! This is always a horrible traumatic experience. Family insisting the nursing staff say this is a 'hospital', not a nursing home... never ends well, they always find out. Family caving and bringing their loved one back home... always ends with an incident at home, and the resident returning, worse off (healthwise) than when they came the first time.
What usually works the best is telling them they're starting with a respite stay, with a vague duration, for a reason, for eg "while your xyz health diagnosis gets better", and telling your loved one when they ask to go home "we have to wait and see what your doctor says". It seems to minimise the blame and upset toward the family, and staff. Then you keep up with that vagueness for a couple of months, and most of the time, in the meanwhile, they get used to being in care and come to accept it.

Good luck OP.