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?

We need proper solutions and proper support for people who have this in their lives, as a society we can't just let relatives bear the brunt of this and end up broken after their parents have passed away

If you were already or became a carer for a disabled child you'd already know just how little 'proper' solutions and 'support' there is now after 10 years of Tory government. What there was is totally gone now, PIP, UC, council cuts cuts cuts. Eroded. So there is about zero way there will be any proper solutions or proper support coming about for people with dementia or their carers. Zero.

No one wants to pay for it and people keep voting fucking Tory.

Regarding the book Genius Foods, you may be interested in this article about the author and his qualifications:

www.mcgill.ca/oss/article/quackery/brain-health-max-lugavere-and-bait-and-switch-maneuver

RB68, my heart absolutely hurts for you. My Dad had terminal cancer and my Mom dementia, at the same time. It was a complete train wreck. The stress was almost unbearable, but we do our best. I still look back and the pit of my stomach drops. They both died the same week. Hang in there.

@Blutopia how did you and your mum get on at the doctor's on Friday?

Haven't read the thread but I do have a good understanding of what dementia is but surely you don't die of it ? It doesn't actually kill you does it ? Just you as you were ? Can someone elaborate on that?

My nan had it 25 years ago but didn't die of it as such and it was much more rare then... I think it's something to do with the Wi-fi / tech around us as is the higher rate of cancers .. just something that goes round in my head and after chatting to my breast consultant he agrees .

I haven't read the full thread yet but it is an evil cruel disease.I have worked in community care for 25yrs and seem families struggle with the reality of dementia. I have made a cups of tea and sat and comforted family members who have torn themselves to bits over admitting they can no longer cope and need to put their relative in 24hrs care. I lost my own grandad to this disease. You lose them as the disease advances and then when they pass away .

@gubbsywubbsy

Yes - people do die of dementia. It is a terminal illness with a recognisable progression.

People's brains gradually deteriorate until they no longer eat.

The reason it is more noticed nowadays is that people live longer.

The biggest risk factor for dementia is increasing age.

We are also much more vocal about dementia now. Years ago it was hidden as the symptoms were deemed to be embarrassing (incontinence/violence/wandering)

And gubbsywubbsy it is only in the last couple of years that dementia has been given as a direct cause of death. But that doesn't mean that this didn't happen in the past.

Ok thanks for that info .. my son has a genetic condition similar to downs and it's terrifying that he will end up like this potentially .. I know it sounds harsh but it's a blessing if they die quickly , it's a awful life living with it ( my Nan lived for years) and she had no life and was such a burden on everyone around her Financially and emotionally .

I actually think awareness on dementia & its effects are very well known now due to a few high profile celebs who've been open about their parents etc & a run of documentaries on that & the elderly care time bomb now were living longer. I also find that nearly everyone I know, knows someone or has a relative who's got dementia. My Grandad on Dad's side & Grandma on Mums side had it way back: & when my Dad was in a private hospice (brain tumour) the old lady next door had dementia, so I'd often alert the nurses as she was stripping off & wandering around again etc.

My DM died of 'complications arising from Alzheimers'.
I felt we lost her way before she died as she knew she was meant to know me and my siblings (and grandkids) but coud never quite remember who we were.
She had hallucinations, cried and was quite child like. I missed the switched on gossipy woman she was and (sounds awful) longed for her to die. She was just existing.
My sister said 'shame we never knew she had dementia'...rest of us looked bewildered, as she had an official diagnosis 5 years before. People do seem to think it is a shameful disease.

One of my lovely friends DF has vascular dementia and can be quite violent. The DF punched another patient and caused harm. Police had to be called and my friend attend an interview as spokesperson for DF several days later. The father, victim and friend were all confused as no-one could remember/knew and it was all an exercise in futility.

So so sad.

and (sounds awful) longed for her to die

I don't think it sounds awful at all to wish for someone suffering to die, DemiGorgon and it's something most of us have wished for when watching loved ones die slowly of this disease.

My mother in law didn't have dementia but she had mental health issues for a long time and then developed Parkinson's disease so things were very difficult for her. When things started getting bad for her my husband was the main carer and it was an absolute nightmare and my heart goes out to anyone caring for an elderly relative as many people just do not understand how difficult it is. We now have three young DC and caring for them is a breeze compared to caring for my mil when things were at their worst. And when she had to go into a nursing home I was shocked at how unsympathetic some people were and how many people said "I'd never put my mother into a home" .

My nan,93, has mixed dementia, is currently in hospital, cannot get out of bed, barely eating and drinking. She becomes very agitated, fixates on things and keeps repeating the same over and over. On Sunday she was asleep when I was there. She woke once to confirm her name. Yesterday she looked straight through me and said 'who are you?'. She is now also incontinent. We have a DNR in place and end of life care agreed when the time is appropriate.
Sounds harsh but if she had been my pet, a decision would have been made long ago. Feels as if I am losing her twice.

You do die from dementia. It was the cause of death on my mum’s death certificate. It’s overtaken cancer as the largest cause of death in the UK.

@SparkyBlue

I was shocked at how unsympathetic some people were and how many people said "I'd never put my mother into a home"

That's part of the problem, I think. So many people just do not realise that dementia care is 24/7 and utterly unrelenting.

Very, very few people have the financial or emotional resources to be able to provide this at home.

There should be no guilt whatsoever attached to placing a very sick person into a facility which provides 24 hour nursing care for people with complex needs.

I haven't personally been touched by dementia but my mom was a care assistant in an old folks home when I was a kid and would be really brutally honest about how those with dementia were living.

It was shocking to hear but I think I've grown up with an appreciation of what it's like (though nothing compared with living through it with a family member obviously).

The morning my mum came home with a black eye from being hit by a dementia patient was particularly eye-opening for 8-year old me. No pun intended.

I feel like the dominant representation of dementia is dotty old ladies who occasionally go for a midnight wonder in their slippers but are found pretty quickly by a kindly neighbour and returned to their bed.

On TV dementia sufferers might waffle a lot and ask "who are you?", but they tell some really lovely tales from many years ago and occasionally have lucid moments of absolute love when they recognise their relatives and thank them for all their hard work.

I think there's space for much for realistic representations of dementia in the media.

I’ve just lost my mum to vascular dementia. She stopped eating and died 10 days later. After four years of hell it was a relief.

Same with me @Vix20678, it was a huge relief when my mum’s suffering came to an end, mixed with complete devastation at having finally totally lost her. 💐

I work with dementia patients and yadnbu.

I don't think a lot of people realise just how much it strips them of themselves. It's not just forgetting stuff, it's a total obliviation of everything that makes them them

That's the hard part - the relief that they've finally gone and it's over, and guilt over feeling relieved.

Again, I really don't think feeling guilty that you're relieved that your loved one has died after enduring an illness which strips them of every vestige of human dignity.

It's natural to feel this guilt but your relative would not want you to be feeling this, I'm sure.

Vix20678