Former dementia specialist nurse. Ask me anything.

[ElmtreeMama]

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

Thank you for your help. Really good advice!

@rileynexttime it's pretty well documented https://www.verywellhealth.com/is-it-alzheimers-disease-or-vitamin-b12-deficiency-98738

The thing is so many things can affect cognitive function! It's great that there has been an increase in seeking diagnosis but often it is something else that is the problem.

Thank you thats very kind, I actually let my PIN lapse because sadly there was less and less nursing involved. I do still train other Healthcare professionals and hopefully will be able to do more of that as my daughter gets older:)

@rileynexttime

I once sat under a table playing cards with a patient because they thought we were in an air raid.
I thought about that the other day when I was pretending to be a cat in the garden!

Thank you OP .Fantastic that you're going to be training and passing on your experience and wonderful attitude .

Do you think euthanasia should be an option when patients lose their quality of life? Perhaps signed pre illness?

I would choose euthanasia over dementia any day.

I am pro euthanasia with the right protocols in place yes.
There have been cases of people with dementia going to dignitas.
I think we place more importance on physical pain than mental pain and I don't agree with that.

However obviously its a hugely complex issue and divisive for obvious reasons.

When asked by patients or their relatives I have always declined to answer because as a nurse my priority was keeping people 'well'

@ElmtreeMama

Thank you. And you are so right. My sister and I live for the moments our dad gives a little wink, or laughs or just gives us one of those looks that he always used to. It just reminds me he's still in there somewhere.

Thank you @ElmtreeMama. The chocolate tasting in particular is a great idea - DF is rather partial to chocolate.

@ElmtreeMama I'm a carer for my mum who has advanced stage dementia and I find it so difficult to get her to do anything. She won't wash, have her nails cut, change her clothes, clean herself properly on the toilet etc. Myself and her other carers have tried all sorts of little tricks to get her to do those things and they worked in the past but not so much now. It causes me and her so much stress and she becomes aggressive. Do I just give up on trying to get her to do those things? I'm thinking of putting her in a nursing home but reading this thread makes me wonder if one would have her as she is so challenging.

Thanks so much for this thread @ElmtreeMama . I look after my 69 year old mother full time, moved back home to do so. She has pretty advanced FTD with Primary Progressive Aphasia. My dad co-cares with me but I manage 99.9% of the practical stuff i.e. hygiene, personal care etc so that they can try to retain as normal a spousal relationship as possible. My sisters are not around much but try to stay involved. Between us all we are agreed that we want to aim to keep her home until the end if possible. My question is: how likely is this and what might the stumbling blocks be?
At the moment I feel like we are managing really well: we are confident we are keeping her healthy, happy and safe. We feel like we can manage well when she is being tricky and have lots of techniques for deflecting and distracting and we pick up each other's slack. One thing I have noticed though, which I am worried about, is an increasingly deterioration in her mobility. She struggles to sit down and get up from a chair and getting in and out of bed is a real problem. I'm worried about her getting injured, or one of us putting our backs out - my dad often has back pain and I'm also aware that my mother is more than twice my body weight so I'm concerned I might struggle to manage eventually. My main question is how do we know when we need more help/more devices to help with mobility? Is there a bottom line when we can't look after her safely at home?

What an interesting thread, thank you for it.
My mum doesn't have a diagnosis of anything, mainly because she refuses to see a GP, she never went.
Her decline has been rapid since my Dad died in October 21.
She forgets words, names etc all the time, but knows she's forget. She'll say "oh I can't remember anything I'm so stupid" .
She repeats the same stories but if she has spoken to my brother can remember something of what he told her, then we hear it for the next couple of weeks.
She doesn't go out anymore do isn't getting any mental stimulation. My DDs and I see her every day. She still likes her tv prorammes and music, and will read a magazine in bed
I was interested to see the phrase anticipatory grief, I started anti anxiety meds and few weeks ago. That is exactly what I have.
Mum is an old woman who just wants to die.
It's very hard.
💐to everyone.

@kickupafuss I think to a certain degree you may have to let some of the things slide a little.
I'd also consider medication if I'm honest to help with any aggression. You could start with a very low dose.
Teepa Snow has some good videos on the subject of assisting with personal care on YouTube.

It is a really common issue and I have no doubt you'd find a placement for her but it could mean speaking to several different homes or telling social services you can no longer cope and they need to step in and find her somewhere.

@Ankleblisters
As with lots of things in life, if you can finance certain things it's a lot easier to keep her at home.
I'd look at buying a hoist or stand aid straight away tbh to save your back.
If you can't afford these things you can speak to SS who can point you in the right direction of getting things in place.
You can also rent hospital beds.
If she has a dementia nurse or social worker already they will often have occupational therapist attached to their team, if they can do an assessment that would be a big help.

@Cocolapew
That sounds very difficult. It sounds as if you're doing all you can for her.
I'm pleased you have accessed help and started medication.

Thank you so much for your reply. Thanks for the book suggestion I'll look it up.

My DF is in a care home, needs help with everything, incontinent, lost most of his speech, unable to walk independently. Carers get him up and dressed each day and he looks ok. Is this still considered late stage dementia?

This is difficult reading for me as my family seems to be in denial.
My lovely dm had memory loss since aged early 60s. 10 years on and she is declined so much. Shes no longer safe to cook and can't remember whats she's done that day. Repeats conversation and fixated on one thing.
I begged her to gey help 5 years ago and she said the tests were all normal. Now my dad thinks there is no point in diagnosis as there is no treatment. He and I don't get on.. he only believes in private health care.

I was wondering about writing to her GP with some honest truths.
Do people really get to this point and seek no help?

Do dementia patients know about who visits them? Do visits from family members help? What's the best way we can help? What do carers think about visitors and non visitors?

@letscallaspade yes it sounds like he's somewhere between level 6 and 7 so late stage yes. 💐

@CottonSock it definitely does happen unfortunately.
Diagnosis is helpful for accessing support and services.
You could write to GP or social services if you feel her needs aren't being met/she's vulnerable and needs help.

Sorry @letscallaspade I see you have two questions.

I think its very variable as to whether or not they know who visits them. I'd say in nearly all cases visits do help.

Personally I always understood why family may not visit so never differentiated. Its a very difficult illness to witness.

Would like your opinion please. My husband has yet to be specifically diagnosed but his head scan showed reduced blood flow to his brain. The Gp advised on the phone call to tell him that she would recommend a memory clinic appointment - this was about 2.5 months ago now. He downplayed his symptoms either deliberately or maybe genuinely I'm not sure. The main issue is his speech. For months now his word retrieval has been getting worse together with long pauses. This is the main reason I was able to persuade him to go to the docs. He told her his other issue was forgetting where he puts his pen!

He has mood swings and often mimics me if I comment on the tv. I've had a look at the various dementia symptoms and he has a lot of them apart from the above. He's in the early stage I think. Should I push for the Memory Clinic? realistically will it help him? if not should I just leave him be to enjoy life in his denial phase. He's still very active and bright. Both his grandmother's had dementia later on in life and he seems to just remember them as being eccentrically forgetful - I don't think he has any idea of the actual horror so I don't necessarily want to disillusion him. He's late 70s so anything could happen before the dementia really taking hold. Just not sure what to do.

@neilyoungismyhero the big positive to diagnosis is access to services, support and medication. Only you can weigh up that balance.

In my former profession I'd always encourage diagnosis as on a national scale we need to know how big the issue actually is and those without diagnosis aren't counted in the numbers.

Also for support for yourself going forward it may be better for him to have an official diagnosis.

The different types also have slightly different symptoms as well so it can be helpful to know which type he may have

Thank you for this amazing thread!

Any advice for when you live quite far away? My dad is in the process of dementia diagnosis, my mum is taking care of him but it's taking a toll on her and her memory isn't great. Luckily she is very active still, mentally and physically. But, they have no one around close by and I live abroad.

I worry constantly about how this will progress in the near future.

@TitanicWasAGreatMovie
Is there anything practically you can help with? Like setting up online shopping or helping source cleaner/gardener etc
Or if helping financially is an option then helping with a carer or respite stay potentially.

Also getting comfortable with video calling now.

Checking things like they have a fire alarm, co2 alarm, panic button if necessary.