To think that the reality of Dementia is misunderstood

[TheMustressMhor]

I think that most people cannot understand what the real day-to-day challenges are for relatives of people with dementia.

Until your elderly relative is diagnosed with this, you probably only have a hazy idea of the realities.

It has only been in the recent past that dementia has been given as a cause of death on death certificates.

AIBU to think we need to educate ourselves more?

This is indeed a very useful thread. Emotionally charged, but useful.

Alsohuman and CleopatraTomato mum is at that inbetween stage where I can't quite bring myself to lie completely - she still has a scrap of awareness there so when she asks if her mother is still alive I say, you're 81 mum so realistically it's rather unlikely. And she falls about with laughter. She screws her face up and says "Do I have any children?" or "What happened to my husband?", she doesn't tend to ask where they are so at the moment I just tell the truth and she nods sagely and says, oh yes that's right, of course.

When she had a UTI recently she went completely over the edge and was making no sense at all, so we just went along with it. She went right back to when my dad was vile to her just before he left, 47 years ago - she wanted to know why he was sleeping so far away from her at night and why he kept leaving and then coming back.

He actually did that. I found myself reassuring her that he was just rather selfish and self-absorbed and that he'd come around. He actually left when I was 5 weeks old for the OW!

I think you are absolutely right OP.

My grandfather died of it, well another stroke as he had vascular dementia, but even then I never really understood until my mother died if the same type of dementia. I spent a lot of time with her and Dad looking after her. It was cruel for everyone involved.

The stats linked by op above are quite scary tbh. 42,000 people under 65 have dementia in the UK!
I really did think of it as a very old age illness and that only an unfortunate few would get it in middle age. 42,000 is really really high.

My advance directive is very simple. In the event of a dementia diagnosis, NO medical treatment is to be given for ANY condition. The kids know it means don’t let a doctor anywhere near me.

My advance directive is very simple. In the event of a dementia diagnosis, NO medical treatment is to be given for ANY condition. The kids know it means don’t let a doctor anywhere near me.

Is this something you can ask your doctor to put on your medical records or do you need any legal input to get this in place?

I do think the reality of dementia should be discussed - by politicians who need to recognise the growing number of sufferers and the immense amount of specialised care that will be required. Much of this care is taken on by partners and families initially but as the disease progresses this can be impossible. My mum is currently in hospital after a series of falls while I was on holiday. They gave her a partial hip replacement and now weeks later she is bedridden, sleeping 22 hours a day and more confused than ever. She has mixed dementia and all she says when she is awake is that she would rather be dead. She recognises me but I'm not sure she knows who I am. The hospital is discussing discharge to a nursing home and all I can think is that I wish we could let her die with dignity instead.

I think it is only fair to say that not all dementia patients become violent.

However many become overly suspicious. One lady I looked after used to lock me out of the house as soon as I'd gone to the shops.

I had to climb in a window once. Then I learned to take the conservatory key with me when I went out.

This same lady used to Sellotape her curtains to the walls after she'd drawn them - and peg the middles together. Shades of the blackout during the war. She was terrified of burglars and used to go round the house at least twelve times every evening to make sure all the doors were locked.

My mum had vascular dementia for 11 years before she died of complications. She managed to live independently right up until her last illness although she really needed to go into a home. But that would have been by force and none of us kids could have done that to her. We decided that that would only happen if she became so incapacitated that we had no hope of looking after her.

What made me so angry, and the last precious couple of weeks so traumatic, was the hospital's inability to see the appropriateness of their recommended treatment. They wanted to perform very difficult, expensive operations, under general on a woman in her 80's with a deteriorating quality of life. Their treatment of us when we moved her to a hospice was vile. Mum died in the hospice and they were incredible. Any hospice nurse deserves the utmost respect and they aren't paid nearly enough.

This is the first time I've heard about an advance directive, and I'll certainly be setting one up. No way do I want to go through what DMum did.

Completely agree. My mum was diagnosed with early onset dementia at 55 and I didn't understand at all what was in store. I had no idea that dementia was the umbrella term for memory related symptoms and that there are so many variations. I read somewhere that 60-80% of dementia sufferers progress to Alzheimers which got me asking - well, what does dementia symptoms mean for the other 20%-40%? I did a lot of research to try to find answers myself. She recently had a brain scan (now 59) which revealed the exact areas of the brain that are being affected and we have been told she definitely has dementia, but I now know that this is an umbrella term and I want to know what exactly is going on. The scans show that her Frontal and Temporal lobes are what have been affected which is actually more associated with FTD not Alzheimers. The medical professionals are using the umbrella term dementia when in fact it would be incredibly helpful for me to know exactly what is going on as I know that loses in different areas of the brain affect different personality traits and have different diagnosis - I feel that it's important that we are educated, information can help us cope as we travel down a dark and scary path together. Education can help us shed light and better understand the changes in our loved ones. Information and education can help us cope and support our suffering loved ones in the best way possible and I don't feel the support and knowledge is there.

My advance directive is very simple. In the event of a dementia diagnosis, NO medical treatment is to be given for ANY condition.

According to the NHS website link below, you have to specifically name the treatments you don't want.
www.nhs.uk/conditions/end-of-life-care/advance-decision-to-refuse-treatment/
So you can say you don't want CPR to be done, for instance, or antibiotics, but not 'nothing at all'.
I also wouldn't want a blanket ban because I might not want harsh interventions or life-sustaining treatment, sure - but morphine to ease the pain in the last stages as I slip away? You betcha.

I doubt, for example, how many people know that dementia is an umbrella term for many conditions. Alzheimer Disease is well known, but many of the other kinds are not

Unfortunately only too many of us know this who deal with loved ones with dementia

Actually that sweeping statement is a bit presumptuous and offensive

My advance directive is very simple. In the event of a dementia diagnosis, NO medical treatment is to be given for ANY condition

So nothing for a sore throat, dental pain or an ingrown toenail - why, just why?

My directive says "pump it in" (morphine), but DNR and no active treatment for infections, cancer and so on if I am incapable of making my own decisions.

Out on a high. Whoa!

So nothing for a sore throat, dental pain or an ingrown toenail - why, just why?*

The PP means treatment which will prolong life, not treatment for painful conditions, where that treatment is solely to relieve the pain.

So no antibiotics for infections and no chemo/radiotherapy for cancer.

Unfortunately I think my mum (age 77) may have early stage dementia. She hasn't been diagnosed and will not admit there may be a problem.

Most of the time she is fine, then she appears to blank a very recent conversation and get confused and then often tries to cover it up. Once or twice this has upset her. She will often repeat herself too, although I am aware that this may be simple forgetfulness. Other times she seems quite sharp, so I don't know where to go with this. Any advice? Thanks!

Exactly @TheMustressMhor.

Ah - thank you - was taking the poster literally !!

@Aurea

Would you mother go to the GP? She can ask to be referred to the Memory Clinic at her nearest hospital.

If you can go with her (if she will let you) you can gently suggest this.

The PP means treatment which will prolong life, not treatment for painful conditions, where that treatment is solely to relieve the pain.

Their 'very simple' advance directive is going to have to at least spell out the above, then, to be accepted by the NHS if that's their intention.

Aurea there's probably better advice on handling the early stages online than I could give, but one thing I would say is to approach getting Lasting Power of Attorney in place. You can discuss it as something that should be done while people are well so that it's ready for when they aren't.

The directive does spell that out. My solicitor assured me that anyone contravening it is laying themselves open to a charge of assault. The wishes of the NHS don’t trump bodily autonomy or consent.

with increasing numbers of us experiencing the horrors of a loved one with dementia it seems likely that more and more of us will look into arranging advance directives and doing everything we can to avoid being in the same situation

My dad died with Parkinsons Dementia. In a way we were 'lucky' that he died peacefully in his sleep with a cup of tea and 'only' had about 3 months in a nursing home before his heart gave out. But reading his journals afterwards was harrowing, I hid them in the hopes my mother would never find the pages after pages where he had just written "help".

His lucid moments, and he had them right up to the end, were beautiful. My dad was back, a month before he died he held a little speech for us all at xmas when we made a big family visit and it was lovely. But they became fewer and further between, and the sheer fear in his eyes when you could just tell that he knew what was happening to him and it terrified him? That fear made everything not worth it at all. My dad would have rather been allowed to die peacefully at home in his own bed at a moment of his choosing than suffer through that. It haunts me still three years later.

@DamnTheMan

I do think that we feel guilty. But is there an alternative?

Thank you! I will take your comments about lasting PoA on board.