Former dementia specialist nurse. Ask me anything.

[ElmtreeMama]

Opinions are my own obviously but happy to try and help.

@ElmtreeMama just wanted to say thank you for posting on here and for all the work you have done. Dementia nurses are amazing. Thank you. 💜

@Cantthinkofaname2203
It's quite rare for someone to be cared for at home until the very end if the dementia plays out in a predictable pattern (I.e. they don't die/become unwell with something else/have a bad fall etc). Because it can be a very slow process and it really is a 24hour a day job so usually at some point family carers get fatigued and can't continue.

Does your mil have a power of attorney for finances? That'd be first suggestion if she has capacity. Get her a social worker or independent advocate if she doesn't.

But if she does have money and goes into a home that money will soon go at between £800 to £2000 a week depending where you live.

@LunaTheCat @AinsleysOnions it's no problem. I loved my job very much but am now a shame so its nice to use my experience a bit.

Thank you @ElmtreeMama

@LunaTheCat it's a fear I hear often!
I'd second the advice I gave uptrend to get your affairs in order.

Take up mindfulness, some new studies show it may be our best defence against cognitive decline along with exercise and eating well etc

Try not to worry. I looked after many people without families and we did out best to make sure they had enriching lives.

Thank you.

sil has applied for POA, mil when you ask absolutely doesn’t recall anyone explaining POA to her, and is adamant she wants both her children as POA which sil is refusing to do.

mil is only very early stages, and while she may have forgotten, usually with prompting she recalls. So we suspect the POA has been done without her understanding fully.

what would you suggest in that case?

Thanks.

I'd suggest getting an independent mental capacity advocate.
If you Google getting an imca you can request one that way.

OP, thank you for this thread.

This post particularly resonates with me.

My mum is caring for my dad, at home, and it's utterly exhausting for her. Physically for now he can still move himself around, but slow and wobbly. But mentally he is steadily declining and needs more and more supervision. He's also getting less compliant and more pugnacious. I'm so worried for both of them. I cannot help because they're 7000 miles away (my brother also lives abroad).

My brother and I have agreed that we'll share costs for our dad's nursing home, but our mum keeps refusing even though she keeps saying how exhausted she is.

@FoxFeatures I've been present in tens of people's last days and deaths and have definitely come to the conclusion that it can only of benefit to have loved ones around.

I dont know if you have children yourself but I sense my daughters presence in every fibre of my being and in ways I can't explain so even if I couldn't hear or understand her I am sure I'd find her presence comforting and reassuring.

@Kucinghitam could you pay for a week respite for him in a local nursing home.

It may help her to see it could be necessary or it could be that she just needs that break.

Or pay for regular private carers to come in so she has respite.

HI OP, my father has late stage FrontoTemporal Dementia, and we recently put him in a home. He is losing weight and refusing to eat more than a few bites a day (but can still swallow), is incontinent and a bit weak, but he is still able to walk around and talk (although doesn't make a lot of sense).

We visit him everyday but he doesn't know who we are, and can get angry and frustrated. We were told he is in the later stages and to expect decline over the next few weeks/ months, and that what is most likely is that he will lose more weight, and succumb to an infection and be bed bound.

My question is, in your experience, how long does this process take? Selfishly I don't want to have to watch him waste away. Even though he does still have some nice moments, most of his day is spent in confusion and fear and unhappy.

Honestly I am dreading the next few months, is there anything we can do as a family to stop him being kept alive for the sake of it? I know that sounds awful, but my instinct is to protect him from what is to come, it's so sad that he will be allowed to deteriorate slowly. Surely it's just cruel to allow this.

I know you're not meant to correct someone with dementia but what do you do when it impacts your life? e.g. my mum in her head was 25 years in the past and thought that I still lived with her/was a teenager, every time I visited (roughly every 6 weeks) she would get very angry and ask me where I had been. The first time it happened it took me a while to work out that she thought I still lived there, I initially thought I was being told off for not visiting enough. So every time she did I told her that I didn't live there. Could I have handled it better?
(she's in a nursing home now, thankfully. The last 2 years have been so hard)

@Farmageddon 💐 FTD can be very difficult. Honestly timeframes could be months or years.
It's awful I know. You can ensure he has a DNAR in place and also a letter from his GP saying he's not to be admitted to hospital except for something acute (like a broken bone).

Thank you.

it’s causing arguments as dh wants to ringfence mil’s money for future care, sil is saying she will be doing the care so the money won’t be needed. She has plans to spend it.

hadn’t heard of an Imca so will google.

That's a brilliant idea, thank you! I'll look into whether those types of respite care are available in their country.

Honestly @user9989820190 I'd just step in to her world.
"Yes you're right I'm sorry"
"I'm home now, I'm so sorry shall we have a cup of tea" etc etc

Its not easy by any stretch.

A good book on the subject is "contented dementia "

All my friends and I worry we have early inset as we are forgetful whereas the reality is that we are juggling elderly relatives, teens, homes, work. What do you consider the most important first signs?

@Kucinghitam in my experience if you have money you can get what you need.
I know patients who had someone sleep over downstairs every night in case they got up and wanted to go out
Or takeaways who supplied every meal and also cupboard essentials for the right price

Sad but true and helpful if you're in such a position to be able to help financially.

At what stage is it negligent to not intervene with their normal activities? Someone I know, is fiercely independent still and capable of getting around, albeit in a doddery fashion with sticks and has regular falls to the point of the entire family believing that they will get a call to find the person died out on the street somewhere, but they insist on that level of freedom, and it seems wrong to deny it, but there is a fear that there will be some kind of negligence by continuing life is normal that way.

@TooooBusy if I had £1 for every time I did a memory assessment on a woman who was perimenopausal and stressed!

I used to say 'if you think you have it you probably don't!' Obviously it's not quite as simple as that but it often rings true.

If those around you are concerned I think that's more telling.

But there are so many different types of dementia that can present in so many different ways so it's hard to pinpoint something specific to be on the look out for.

Thank you OP for doing this!
A relative of mine is in a care home with moderate dementia. She keeps falling for her charming young male carers in a big way! On one hand the fantasy of being in a relationship makes her happy, whilst on the other she creates a lot of angst for herself (at times realising that they can't be exclusive as a "couple"!). Is this common? What's the best way to handle it, if at all? TIA!

@TimeToBreakFree unfortunately we need a change of attitude as a society I think!! Most of us would want the freedom but we live in a society that places safety above all else! I'd say get them a social worker as it takes some of the decision making out of your hands and also 'covers you' somewhat.

Hi @squishee it is common, often with other residents causing distress to their existing spouses.
Personally I wouldnt worry too much. If you think of all behaviour as 'an expression of unmet need' then you could try and meet the need in other ways.
Doll therapy, singing, dancing, companionship, none clinical touch (whatever it might be). But often it's easier to just agree and distract.

Are you saying society needs to change to value freedom more than safety or value safety more than Freedom ? I couldn't tell from your answer.