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?

That is very difficult to cope with Alsohuman and I sympathise.

Did they both go into the same nursing home? I am assuming your 98 year old father didn't want to?

Frankly I have difficulty understanding how dementia care is not funded in the UK. Is it not considered a disability like everything else that leaves a person needing care?

It can be funded if you can get Continuing Care in place.

This is incredibly difficult to achieve.

I’d appreciate a long running thread on support /chat for living with relatives with dementia if there isn’t one already. I know there is one for elderly parents but I’d like something specific to dementia if someone wants to start one.

DGM was diagnosed 2 years ago. She’s 86. Im so torn with worry over her but also my DM and DUncle who in turn are feeling this so much. My DM is in remission from cancer and I worry all this stress will not help her keep her own health in check. I can’t vent my worries or questions to either my DM or uncle as I don’t want to add to their burden or pressure, and I’d love a thread to let off steam on....

It’s a shitty horrible thing to go through.

I totally agree that the reality of dementia is woefully misunderstood. People seem to have this image of adorably dotty grandma who has a bad memory but loves to talk about 'the good old days', sing Vera Lynn, cuddle toddlers, and look at photographs.
My mum has frontotemporal dementia. She talks rarely (mostly to say no currently), can't recognise any photos/people or even food, will throw and spit food if it isn't 'right', tantrums like a toddler, and in the earlier stages could be incredibly rude and nasty. She hates children. Oh, and music means absolutely nothing to her, even though she loved classical music before her brain was eaten by the dementia.

@TheMustressMhor, you’re right, he fought going into a care home tooth and nail. Eventually I persuaded him to have a two week trial. There was no mention of leaving at the end of the trial, I suspect he was relieved. They had rooms opposite each other.

My father has Parkinson's and a lot of that has been the Dementia side, he's now asleep most of the time. When he does wake up he sometimes forgets how to swallow. He spent his whole life being healthy trying to avoid heart disease etc. We now have to watch him die in this awful way. Even the doctors have said his heart is so strong he keeps going on. These diseases are so cruel and as for funding and support it's a constant battle. We've also had agreed now that he will not go back in to hospital (unless unavoidable) as everytime he's gone in he's come out worse.

My gf died of dementia in the mid 1980s when I was a teenager.

What was terrifying was the speed of it. My dad noticed there was a problem in the March, at which point he was living in his own quite successfully.

When he died in the following January he was in a nursing home and knew no one, and had been like that for several months.

He lived at a distance to us, so I’m
Sure I don’t know “the full implications” of dementia, but those are my recollections. Although some posters may argue that he speed of it could also be seen as a blessing.

AbiBranning

All relatives of people with dementia dread hospital admissions, unfortunately.

Patients become even more confused and sometimes come out with bedsores.

The reality of dementia was certainly misunderstood by my SIL, who cared for her DM for upwards of five years.

At her DM's funeral, I heard SIL say " Of course, she got a bit confused towards the end, but I never took any notice."

True dat. MIL had had mixed dementia for at least six years, didn't recognise family members, hallucinated, made sexual allegations against family members and her GP, could not wash herself or look after herself and, towards the end, developed the habit of shitting on towels and stuffing them behind the bathroom radiator, but it was all right, she was just a bit confused.

Angry? You bet I am.

@AlabasterAngel6

I'm sure we could use this thread as a support tool for people who are coping with parents/partners who have dementia.

Or shall I start another one?

NaToth

That's awful. Maybe your SIL just could not face what was really happening? Some people are embarrassed to admit that their mother/father/auntie/whoever has dementia.

But you'd think that in this day and age it would be brought our into the open.

What do people think of medication such as Aricept for dementia?

Did it help? For how long?

My dad has early onset Alzheimer’s, was was 59 when he was diagnosed.
He’s now 66 and is ravaged by it. He’s recently been sectioned because he’s getting very violent.
My mum is exhausted, he’s just been granted continual funding but we can’t find anywhere to accept him, so he’s in hospital.

my Mum was extremely health conscious and always followed diet recommendations about cholesterol, heart disease etc. she was an excellent cook and fed her family home cooked and nutritious meals her whole life.

My DGM was always extremely health counscious, too. She was one of those people who took supplements, drank herbal teas, ate wholegrain rye bread only, lots of vegetables etc. (She was quite into New Age and Woo, which seemed to come with an extra serving of vegetables back in the day. I remember fondly reading her UFO magazines outloud to her when I was a kid.) Ironically, she was very very healthy apart from her brain. I've always though, without any medical proof at all, that it's the reason why her struggle with Alzheimer's was so prolonged.

I know that my dad (who's the son this particular DGM) has two copies of APOE-e4. There are so many people with dementia (and several specifically Alzheimer's from post mortems) that he chose to take the test. So I know I at least have one copy of it. DF is 73 and healthy so far, so that's great. I'm still in my 30s and don't really know what to make of the risks, and I don't really feel mentally ready to start planning my own demise.

My Mum took Aricept. Found it quite difficult to tolerate at first, but then for a glorious few weeks it was like the clock had been turned back several years. Fortunately/unfortunately the new lucidity she had meant she was able to tell me the cancer in her breast had come back.
I think the way we care for people with dementia in this country is shameful. The burden is all on families to cope. Facilities are poor.
Tbh I would prefer to remain ignorant, but having had one parent die and am currently helping DH with his Mum,I am not.

Memantine

I have seen patients given this drug and the side-effects were terrible. Has anyone got anything positive to say about it?

I cared for a few people with dementia. My Nan had it and my mum has been diagnosed with early onset. The consultant reckons she has about 5 years or so
I'm terrified of getting it

My mother died 2 weeks short of her 99th birthday in a nursing home in March this year. The last time I saw her, all she would say to me was "Mum mum help me help me". She had been living in her own flat for most of the previous year and had made a serious suicide attempt (Tramadol overdose). Whether the overdose speeded up the onset/progress of dementia I don't know.
Dementia is my biggest fear. It's so terrifying. I'm fearful I will get it myself, that my husband (currently in his 70s and very fit and well) will get it and I even have horrific intrusive thoughts about our daughter who is only 28, one day being a frail old lady, all alone and terrifed with dementia after I am long gone. I suffer with depression and anxiety, so am rather prone to these horrible pessimistic thoughts I'm afraid.
To those who work with patients with dementia, does it not make you very fearful about what is in store in your own future?

We were talking about this at lunch. My friend's mother has Alzheimers.

Her stories of how she is progressively losing her mother, the difficulties, the rage, the self harming, the meltdowns, the forgetting how to use implements, her fathers' 'in sickness and in health' loyalty,

were truly heartbreaking.

It’s bloody heartbreaking watching someone reduced, terrified and confused by dementia. Both my gp’s had it and refused to accept it for a long time. For the last couple of years we told my gma that my gpa had just popped to the shops (he’d died) as each time we told her of his death it was like the first time and just watching the blow land again and again was too much.

Clearing out my grandparents flat after they died I found about 50 letters typed on an old type writer by my grandpa. He must’ve been in early stages of dementia then and had had his driving license removed as he’d driven straight into a wall. He’d written all these barely comprehensible letters to the dvla stating how much he needed his driving licence to live in his house, how he’d fought in the war and watched his friends die and they could at least let him drive to M and S once a week to buy his wife a fruitcake. Then he’d obviously forgotten he’d written them, put them in a drawer and typed the whole thing out again the next day. It just broke me.

When my dad passed away in June he was bed bound and incapable of doing anything for himself. He didn't die of dementia though, sepsis took him. My mum is still alive but has Alzheimer's and is still in the same nursing home as both her and dad were.
Every time I visit her she asks me if I've been in to see dad. This is the way it's going to be now until she can't recognise me. I have to deal with my dad dying all over again at every visit.

I can't wait for it all to be over to be honest.

To those who work with patients with dementia, does it not make you very fearful about what is in store in your own future

That's a good question.

For me, I can say that I do not fear getting dementia myself, but I fear for my DC having to care for me.

I have always believed that dementia affects the relatives of the sufferer far more than it affects the patient.

Once the early stages are over, the person with the diagnosis of dementia doesn't realise that they have it.

So it is for my children that I fear, not for myself. I have already discussed this with them and told them not to feel guilty if I need to go into a nursing home.

My gran has it. This time last year she was living independently and had memory lapses. As I write she's in a home, having paranoid delusions and awful hallucinations (e.g. that my dad and uncle have been murdered) that frighten her. She's picked all the skin on her hands and arms untill it's bleeding. She had her 90th birthday a little while ago and all I can do is hope she's relieved of her suffering soon.

By the way, for those who work in the sector - what is the best way of reassuring her when she thinks something terrible has happened to family members? We obviously can't use a "kind lies" approach, we can't always have said relative visit to show her they aren't dead/in prison/on the run. She doesn't believe it when she's contradicted/corrected. It's heartbreaking watching her get upset about these things.

FFSDH

That is a desperately sad story. I can quite understand how you felt broken when you found all those notes.

And to everyone who has to go through the hell of caring for a loved one with dementia.

www.mumsnet.com/Talk/dementia, link for those who asked.