Former dementia specialist nurse. Ask me anything.

[ElmtreeMama]

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

I'm surprised @Neolara they should definitely be used to dealing with it.
Is she privately funded? If not then her social worker will need to find a suitable placement for her. If privately then try a nursing home but it's really very common

Neolara
Someone told me before (not sure if it's true) that as nursing homes only have a certain amount of staff - and my father's place seems to constantly be understaffed - they may be reluctant to take on more than a few 'high needs' patients, as it means the limited staff they have will be under more pressure.

Like I said, not sure if that's true, but certainly when we were looking around, we felt as though my father was an 'undesirable' candidate because of his behaviour.

@Farmageddon definitely make sure he has a legal dnar in place.

@Neolara sadly that is probably true and of course they can refuse people if they don't think they can meet their needs. So it may be a case of having to try a few sadly.

Its a huge issue that needs looking at nationally
Why is it that over 90% of hospices receive outstanding CQC reports and less than 10% of nursing homes do when it's essentially the same thing.
Lack of funding, Lack of kudos and public support. The inequalities in end of life care in this country are woeful and sadly families have to pick up the slack.

Such an interesting thread! Thanks OP.. I will practice more mindfulness!
I am learning the flute as an adult .. I will be really peeved if I get dementia after all that musical effort!

Just as an aside, I am a GP and will often notice that someone’s behaviour and thinking has changed. When I mention it there is often relief from the person and from the family. There is a lot to be said for having the same GP for a long time ( some of my patients I have known and cared for 15 years). Sadly it doesn’t seem the norm anymore.

thanks for this thread OP could I ask about some of my grandmother’s behaviours. She is now in a nursing home for dementia. She has started saying she’s giving birth and has found 3 teddies to be her children. Also when she sees me she thinks I’m my other grandmother. Tbh I just go along with it. Even regarding the teddies being her children!

One of my parents died during covid lock down and we were not allowed to see them. They had stopped eating about 12 weeks prior to this and weight was in freefall. Symptoms were very distressing, hallucinations, anger, crying, abuse and some awful revelations of abuse as a child which I knew nothing about. (Still not sure if these are true or part of hallucinations but they relived it crying and pitifully saying stuff like "I'm only a child/I want mummy/(pleading)please don't do that/no...no..no etc) They died during lockdown having spent weeks alone. I can't imagine what went through their mind as we didn't visit. I am traumatised and will never ever get over thinking of this. Ultimate failure to be there. (Meanwhile bastard fucking BJ and cronies were having drinking parties)

I was so scarred by the experience watching their distress for weeks and weeks after years of constant decline and difficulties. It's taken me 3 yrs to stop thinking of killing myself so frightened am I of going the same way. I have LPOA, advanced statement and directive logged at hospital, with GP and family.

I wanted to ask how to kill myself successfully and when will I know I need to...but anti depressants have actually helped me so I don't think of this all the time and know you can't answer.

Is this a normal reaction? Any thoughts about the memories and hallucinations?

@UnsureSchool32 my knee was confused for the dog. They'd pat, stroke and talk to "the dog" We had dolls and fake pets as this seemed to be enjoyed

@ElmtreeMama Thanks for the thread.

I was interested to see you mention the book 'Contented Dementia'. I have read it, so it's reassuring that you rate it.

My DF is in a care home with Alzheimer's. He is visibly deteriorating mentally and doesn't seem to realise that he is in a care home. Circumstances mean that I need to take my DC (pre-teens) with me when I visit and they find it quite hard. Do you have any advice on how best to support them?

Thank you for posting!

My dad is in late stages of dementia and has been in a care home for nearly 4 years. He now can't walk, is fully incontinent and can't talk. Except for the odd random nonsensical sentence or expletive! He spends all day sitting and napping, or laying in bed when he's resisting getting up. Although he still does eat like a bloody horse!
I'd say he's been at this stage about a year. Although he wasn't diagnosed until late 2018, I can look back and confidently say the onset was about 2008. Is it more usual in someone like my dad to go before he gets to the stage where he's not eating or drinking? I am terrified I will have to see him go through that stage and the last few years have devastated me enough. He's also diabetic. Honestly, I have no idea how he's still here - he's outliving everyone!

My heart will break when we lose him but I can't bear the thought of seeing him get worse. I miss him so much even though he's not gone yet.

And in response to a previous poster, my mum left my dad when he was diagnosed with dementia although not divorced. But that's a whole other thread!

@AvocadoRock anticipatory grief is real and unrelenting with dementia. It's complicated by the difficulties you face, your humanity, resilience, watching them suffer with no quality of life and wishing it would end.... and then guilt. ❤️ to you

Yes she’s talked about a cat. No one can recall her having a cat. I guess these things are all comforting. Sometimes she says she doesn’t live at home anymore. She gets paranoid around male doctors. She calls the carers after relatives names.

Such a helpful thread, thank you.

I wonder if you could give me your thoughts on the risk/benefit of respite care relatively early on? My relative has LBD and is moving (I would say) from the mild to the moderate stage (not too much personal care needed yet, and plenty of lucidity at times, but he has become very slow and uncertain all the time, and is sometimes very confused). His wife is finding it all very relentless and is interested in him having a week or two in a care home for respite. He's worried that he'll never come out, however, and she's worried that the change of scene will be very unsettling for him and will cause a decline.

Have you seen this work well?

@UnsureSchool32
Thats very common and I was a big advocate for doll therapy when working.
I had a patient who spent hours every day 'breastfeeding' her doll. Controversial to some but gave her such enormous comfort and calm.

@CJat10 💐
I have had many patients and relatives ask me about 'when to end it'. Obviously I can't comment but what I will say is that it's human nature to move the goalposts as you go along, so you think you could never live with a diagnosis but then you get a diagnosis and you actually feel ok so you think ok well when I can't remember my children's names easily but then this happens and you move the goalposts a little more. I've seen this with other illnesses too.
I finished working just prior to covid so I can't imagine what you went through but I will say I have nursed people through similar experiences including the revelations of abuse and it is of course incredibly distressing.Your post reminded me of one such woman who seemed permanently in anguish- although a lot less so in her final days as she then had a restful passing. I dont have the answers - it's a relentingly awful disease which we just don't know enough about.
I used to say my days were filled with joy and heartbreak in equal measure.

I am very sorry about your parent and it sounds like you (very understandably have ptsd) I'd definitely recommend grief counselling if you've not already had it and forgive yourself as I have no doubt you'd forgive your child if it were them.

Hi @PerrinAybara
I think knowledge is power so them understanding as much as they are able about what is happening and why and what they might expect to see. And then practically I think giving them something to actually do when there like go through the sports pages or read him a story. Or even if they are able help organise his room or play simple games. You could do 'taste tests' with a couple of different chocolates or fruits if your DF is able.

@AvocadoRock
I've seen people last for years.
I once looked after someone who survived on half a Mars bar a day for months!! Ultimately the heart keeps beating until it doesn't.

All I can say is hope for the best, prepare for the worst which terribly trite I know. And for what it's worth there can still be joy in the very late stages. I have said to relatives before 'there will be many times in the coming years when you will wish yourself back in this room with them' so remember that when you're wishing for it to be over.
Anticipatory grief is a huge strain physically and mentally so look after yourself as well and go easy on yourself and seek support from those around you.

Hi @twizzlet I've seen it work well in the earlier stages particularly when someone can remember when they are going home and mark it off on a calendar so to speak.
But I would also say its common for the carer to realise that they can't carry on as they have been so respite usually becomes more frequent after the first time.
If it does go ahead and is possible I'd recommend being really clear about his routine with the care staff and if family besides his wife can visit and reassure him regularly that does help.
Also could set up phone calls etc with his wife but it is important she has a proper break.

I hope I haven't missed any questions.
Please tag me again if I have.

And I'm sorry I don't have all the answers. Xx

@ElmtreeMama thank you so much for the thread.

My auntie has Alzheimer's- was diagnosed about 6 years ago. She's now at the point that she doesn't know anyone anymore, is mostly non verbal, her ability to eat is reducing and is now doubly incontinent. Recently she has become exhausted and is sleeping more and more. Blood results are normal but when speaking to her dementia specialist nurse we've been told this isn't a symptom of her disease which has really thrown us, do you think it is likely linked to the Alzheimer's?

@Pjmaskmummy thats interesting.
If you look at it in the context of dementia being brain failure and the brain controlling sleep then yes I'd say is linked.
Although I also think it's potentially age related in general.
If her bloods are normal then it could be her emotionally retreating as well.

If you're interested there is a book called Namaste care which is hugely beneficial (in my opinion.) It gives ideas for the later stages.

Thank you so much, that's really helpful advice. One of the sad things is that he does still have enough insight to realise how much his illness is 'ruining' his wife's life, so in his more lucid times he feels a huge amount of guilt on top of everything else.

Hi again. Your MIL doesn’t need ID to revoke the LPA. She must have the mental capacity to understand what she’s doing - a dementia diagnosis doesn’t automatically mean loss of capacity. If she understands the LPA and knows the changes she wants to make, then she can do so by obtaining a copy of the LPA (both health and welfare if it applies) and writing a ‘deed of revocation’ letter to the OPG, enclosing the appropriate LPA. She can be helped to do this, but the deed of revocation must be her wish alone. It is also her right to have access to the LPA documentation if she wishes and the attorney should provide that if asked to do so. Once the OPG receive and process the application, they will then cancel the original LPA and another can be set up according to her wishes. If MIL isn’t exempt from the registration fee, I think this will have to be paid again when the second LPA is registered, but you need to check that.

It’s important for the attorney to understand that having someones’ LPA doesn’t mean they can do as they like. Everything they do has to be in the best interests of the donor, and if they have gone against her wishes in the actual setting up of the LPA, then you are right to be worried, and it does sound at the very least as though MIL has been rushed into signing something without proper explanation. If you are concerned that the LPA is being abused I think the best course of action is to insist that the appointed attorney respect MIL’s wishes and allow her to revoke and rewrite the LPA, adding the other attorney. If they won’t, that should be enough to confirm your suspicions and the best thing you can do is report to the OPG that you have concerns, and they will investigate.

@ElmtreeMama thank you so much. Just to say all this helped

@ElmtreeMama thank you so much for this thread .Your replies are so kind and thoughtful you must have been (and will be again I hope ) a fantastic nurse .

I have a couple of people in my life who both have Chrons ( one has Chrons and other auto immune conditions ) .Both get B12 injections but I strongly suspect not frequently enough and both have forgetfulness .One is convinced she has dementia ,has been tested and depression not dementia confirmed .

Is there any research on B12 deficiency and cognitive impairment that you could link to or recommend ?
PS as a SAHM I'm assuming you have a child /children and I can't stop myself from thinking that your "put yourself in their world" and your techniques of distract rather than confront will make you a fantastic mum.