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?

HannahHillier

You have summed up exactly why I started this thread in your answer.

It is for the relatives whose lives are stolen that I wish there was a greater awareness of what having a mother/father/partner with dementia really means.

I have been variously a Ward Sister (Elderly Care) and Matron of a Dementia Care Home.

Latterly I worked privately in people's homes as a specialist carer.

The devastation dementia wreaks is unbelievable unless you've been there.

I cared for one lady who I thought was the most aggressive patient I had ever had (in thirty years of nursing) and yet at times she was calm and sweet-natured.

After she died I remember telling DH that my next patient could not possibly be more challenging......except she was.

It was unbearable for this woman's husband to hear her fighting three nurses and carers off, every time we washed and changed her when she was incontinent.

We were unable to brush her teeth or her hair for over two years. It was too distressing for her.

And in fact, one of the worst things was trying to get her GP to prescribe anything to calm her down. This particular GP clearly thought that we were exaggerating.

It wasn't until another GP at the practice came to do a home visit that some sedation was prescribed. He was horrified when he overheard the lady being changed - he had not realised how terribly violent she could be.

At one point this lady had to go into hospital.

It took four police officers and two paramedics to get her to the ambulance. It was absolutely awful.

OneAboveAndOneBelow

Average age for diagnosis

I've posted a link here

And needless to say, it is essential that there is someone there with the person who has dementia, all night long. They frequently get out of bed and can have very unusual sleeping patterns.

Has anyone had any experience of memantine for advanced dementia?

I found it to have so many side-effects that its benefits outweighed its disadvantages.

I actually don't agree we need to know more. I think dementia friends is great but if the worst happens we will deal with it but life needs to be as good as possible for as long as possible.
Alsoz I know this isn't trie for all but a lot of dementia and cancers share the same risk factors as cardiovascular disease - obesity, smoking, alcohol, diet. It's a myth that they don't. And I say that as someone who is overweight and probably drinks too much.

StealthPolarBear

I would not normally respond to a post like yours, which in all honesty I found deeply concerning.

What are you suggesting? That we should lock dementia sufferers up and throw away the key? Or worse? Where would we draw the line so others' "good lives" are not impacted negatively by a loved one with dementia?

Regarding risk factors, we all know being obese, drinking too much, smoking, lack of exercise etc. are risk factors for lots of things. But they are just that, risk factors. They aren't proven to be the cause except in special cases like lung cancer and smoking.

It does no one any good to blame a person with dementia for causing their own problem by not exercising enough etc.

The main reason we can't cure dementia in most cases is because we don't understand the causes. This is true for many diseases.

Please give your head a shake. As humans, compassion to our fellow humans is a key to who we are.

Only about 10% of the elderly population is ever going to get dementia - about 30% of the over-eighties but that is still not a large number. So not everyone is ever going to have to deal with dementia in their own family. Teaqching everyone about living with dementia, won't be much good for those who are dealing with Parkinsons' disease, heart disease , stokes etc. Maybe it's OK for people to find out as the situation happens to them.

My sister is currently caring for her partner with terminal lung cancer, emphysema, and has had a leg amputated. My sister knew nothing of any kind of disease, and nothing about home care. But she educated herself through Dr Google and is now doing a sterling job with him. We can all do that when the time comes.

I haven't read the whole thread but there's a fair few facebook support groups around for carers of those with dementia. Often, if carers can't leave the person with dementia, these groups can provide much needed support as a place to share the caring load, vent, cry etc.

Admiral Nurses may also help those who are carers.

I really like Teepa Snow's videos: .

If anything, we need more people to understand what is available in terms of advance directives. Pretty much everyone agrees that they’d rather be dead than have dementia, and while you can’t request euthanasia at present you can decline medical treatment and hope something else finishes you off. I’d rather sign a DNR/no antibiotics etc and then die of a survivable heart attack at 76 than not sign it and end up with 10 years of dementia.

Reading everyone's experiences makes me realise again how lucky we were. Hannah your 3rd picture of your grandad is just how DPs mum looked in her last year, really like looking at a male version of her. She was lovely too and your poem is wonderful.

Difficult to write more as feeling quite emotional. to all living with or who have lived with this in any capacity.

StealthPolarBear I understand what you’re saying - I would probably prefer not to know as much about dementia as I do! I think the problem arises when people don’t understand the reality and judge/make crass comments to those who are dealing with what can be a hellish situation on a daily basis.

OP my mum takes memantine - started at the early stage and 2 and a half years in, she is just getting to moderate stage. My understanding was that it simply slowed the decline? She has never had any side effects.

@TheMustressMhor my grandad took memantine for a while, but I found him so much worse on it. He had very bad hallucinations and night terrors where he'd act out. He had demons in his room and he was fighting them off. This happened day and night. Aricept wasn't any better either, and made his muscle stiffness and jerkiness worse. But mementine made his life unbearable terrifying. I chose to take him off dementia medication altogether as I preferred him to live a shorter, happier? life, rather than a longer life in terror every single day. I use the term happier lightly. But certainly not terrified which was how he was when he was taking the memantine.

He always used to enjoy watching the news, BBC News 24, and I had to take the colour off the tv, turn the saturation off so it was just a black and white tv, because the red colour of the news bar at the bottom of the screen terrified him. He kept saying it was coming out of the tv at him.

Thank you @Neome it got shared by Alzheimer's society quite a few times and I've had lots of people read it at their loved ones funeral. It was overwhelming the amount of response I got from it because I'm not actually a poet, or I don't class myself as one, I just write bits here and there.

It's incredible how they change. It's so heartbreaking watching them. My grandads eyes used to be the brightest blue but they've gone so dark now I don't understand how it can change them so much.

No one should have to care for a dementia sufferer at home, this is a job for professionals in a professional environment

I'm hundreds of miles away from my grandma with it (doing a PhD). I hate it.

I used to phone her a couple of times a week when I was walking home from the university (I did that for years before she was ill too), but it's getting harder and harder now and I don't know if I'm doing it for myself rather than her benefit. She's very anxious and spends most of the phone call asking where my DF is and can't think of anything else. I wouldn't mind if she thought I was a schoolfriend or was telling me she was on her honeymoon or something, even if we were going around in circles but she sounded happy. I worry that I'm upsetting her, but feel like I'm giving up on her if I don't ring... She's also not English and I'm scared that at some point she'll go back to her mother tongue and then I can't do anything (well, name colours and count things but that's not much good!).

She's in a care home five minutes from my family, so actually sees a lot more of us now than when she lived a couple of hours' drive away. The place is nice, the food is good which is great for her (she's lost a lot of weight), they do lots of activities and some trips out and entertainers come in. It's just that she can't really enjoy it now, she's always scared.

I wouldn't want that to be something other people thought about to be honest — I don't want them to worry about it or think it might happen to them when they're planning nice things with their grandparents or chatting to them, because that was what I was doing two years ago. There's not a great deal you can do about it, even if you know.

And of course it's much worse for my parents, who are the ones who get the calls about going in to calm her down or that she's been shouting his name over and over again for an hour. It's just that every time I see her she's surprisingly much worse — it seems to be very quick for her. I don't know if it will stabilise.

@Blutopia and @HannahHillier

Regarding Memantine

Thank you for sharing your experiences regarding memantine.

Yes, it is given to hopefully slow the progress of dementia and improve the quality of life of those suffering.

In my work I have seen it given to a number of patients and I have not (yet) seen it make a significant difference. In fact most of the people I have seen it given to have had horrendous side-effects.

I think the problem arises when people don’t understand the reality and judge/make crass comments to those who are dealing with what can be a hellish situation on a daily basis

Yes to all of that.

I have met too many people who think that dementia means a slight inability to remember where you put your glasses.

If only...

My mother ate well, read, exercised, never smoked and was never overweight and yet she has dementia. She was diagnosed around 9 years ago at aged 72, after a few TIAs

This demonstrates that despite doing the right things, some people will get dementia anyway.

I’d rather sign a DNR/no antibiotics etc and then die of a survivable heart attack at 76 than not sign it and end up with 10 years of dementia

I don't think people understand about advanced health directives TBH.

A good many people think that signing a DNR mandate is all that is needed.

I personally cannot see the point behind giving antibiotics to someone with advanced dementia. Why prolong their lives?

It's like a zombie plague waiting to get us all if we live long enough....🧟‍♀️

21tryingtobebetterallthetime you have completely misunderstood my post. I didn't intend any of the stuff you suggest.

Just to address the risk factor issue, no OF COURSE smoking etc being a risk factor doesn't mean all smokers will get it. That's true of very few diseases. I have no intention to blame anyone but to say there is no link is misleading. Most people accept smoking is a cause (not THE cause of lung cancer) yet we've all heard the stories about people who smoked all their lives and died in their nineties.

Definitely recommend all the videos on YouTube by Teepa Snow.

As for the other issue and I am being very careful about what I say, please believe my intentions are good.
My grandma had dementia. She was aggressive and paranoid. Then she became a shel of her former self. By the time she died I had grieved for her a decade earlier. I was also shocked by he reality of dementia. I don't think that's unusual, I know little about the effects of cancer, or chronic pain. Should we all learn more about the realities of these very distressing things or should we live our lives in knowledge of the existence of these things and the need to make allowances and be good people but in ignorance of the horrific details unti we need to. We don't know what horrible things life is going to throw at us. Why start inviting unpleasant things into our lives unnecessarily?

My mother never had any risk factors for dementia - she lived a very healthy life, never smoked, drank or used any medications at all. She was never overweight and she walked everywhere . Ended up absolutely helpless with dementia. There are definitely no guarantees about this disease.

I am really sorry about your mother. But that really is true of most diseases. Risk is not certainty. Absence of certainty does not mean absence of risk. If you smoke its not certain you'll get lung cancer. And some people get lung cancer having never smoked. It doesn't mean smoking isn't a cause.

Coming from a family riddled with dementia, I think life style is a red herring, it’s genetic. Which is why there’s an advance directive in my medical notes that no condition following a dementia diagnosis is to be treated. The first chest infection or UTI can take me down.