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?

My dm is currently late 60’s and watched both her parents and her older brother die of dementia. She’s convinced that she’s going to get it too and obsessively reads and obeys any health tips she finds that can avoid it. She’s made my brother and I promise to tell her if we think she’s getting dementia as she wants to kill herself before she becomes a burden. We’ve always managed to make a joke out of but deep down it terrifies me.

It's an awful way to go and I would want to be euthanized before I got to a certain stage

I am a nurse and I occasionally care for patients with dementia. I also briefly worked in nursing homes before qualifying. Dementia scares me, especially because my grandfather had two different types of dementia.
I hope that by the time I’m 50-60 I will be able to have an advanced health directive in place that specifies at what point in my dementia I should be euthanised. Even in the nicest of care homes, sufferers of dementia are always distressed to some extent.

I will just say this and leave it there. It does not have to be awful when a relative is in a professional care setting.

When Mum was dying I brought in the iPad with her favourite songs on and put the earphones in her ears. She sang along and used her arms and fingers. It is a wonderful memory.

Prior to her last days she resisted everything!

Bless her. She is at peace now. As are we, and none of us know how we will go either. Hopefully with the best care possible, which cannot always be provided by family either.

Kudos to everyone who has dealt with dementia in their family. I know what it is like.

Does anyone know if there's any link between having a general anaesthetic after 60 and the likelihood of dementia? I'm 65 and need knee replacements, but if the general anaesthetic will mean I have dementia earlier than otherwise I'd rather be in a wheelchair. I will ask the consultant the same question when I finally get a bleepin' appointment but would be interested in what people think about this.

Yes. My mum is essentially my dad's carer now. She does struggle with accepting his limitations and still asks him too many questions.
It's easily done, I took him to a cafe today and almost got him all confused in the queue.

She's struggling to be patient and because she asks/tells him about everything he gets stressed too.

Meanwhile he's terrified after seeing his parent go through the same thing.

I admit I don't really know anything about it. But I'm terrified of my parents or in-laws getting it. It sounds absolutely soul-destroying.

Is there an average age for diagnosis? My MIL cared for her mum at home for years but eventually she went to a lovely home but wasn't there for long before sadly she died of a stroke. She was late 90s and had done really well health-wise all her life but went quickly downhill in her last year or so.

My mum was diagnosed with alzheimers dementia at the age of 79, and she's had it for 2 and a half years. 2 weeks ago she had a fall and hurt her back, and it seems to have triggered a slip into the moderate stage - confused about where she is, denying that it is home, asking for my DSD who died of lung cancer 12 years ago etc. At the moment she believes me when I tell her the truth and doesn't seem distressed, but I have read Contented Dementia and the minute she is too far gone to spot that I'm lying, I'll say whatever I need to say to keep her calm. For now she still has a faint inkling that there's something wrong with her brain, but in the last 3 or 4 months she has given up on everything...going to church, going shopping, getting her hair done, going to lunches and activities. She just sits in her sitting room, and even before her fall sometimes she didn't get out of bed or get dressed. I took over laundry as she stopped doing any weeks ago, and my DH cleared 3 years worth of dust from the entire flat when she was too poorly to argue.

Then yesterday for the first time I found myself on my knees in her flat scrubbing shit off the carpet, and I nearly broke. It was a one off - she just didn't get there in time - but if this descends into incontinence I just can't do it.

One day I think she is ready for residential care, the next she doesn't seem too bad. I've arranged private carers to call in at her home now, but I still worry about all the time she spends alone, wondering why she hasn't seen her dead mother or dead husband and when she will be allowed to go home. She used to feel safe and secure in the flat, said it was her favourite place - today when I said it was her home she looked at me as though I was insane and said, why would I choose a horrible manky place like this as my home?

It's cruel, is what it is.

Thank you for the NHS research tip - I've signed up.

My mother had dementia and it's heart breaking. Ironically, of her siblings (she is the eldest of four), the others are all fine, in spite of one being a chronic alcoholic who has smoked 40 a day his whole life and is still fit as a fiddle in his mid-70s, the other still fine despite having a heart attack in his 40s and my aunt, also fine, despite cancer and always struggling with her weight. 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. She's been in a care home now for 3 years.

She is physically pretty fit. She gets immensely frustrated with the other people in the home and will hit them from time to time (she's never had patience in her life!) She knows me and my daughter, but she couldn't tell you who we were. She asks about her husband and mother and we just say they aren't here at the moment, rather than tell her that they've been dead for years.

All her savings have gone on care. The care home is as good as it could be but the place is soul destroying. Confused, frail people, shouting, shuffling, unable to speak much. It's a living hell.

My biggest fear is her lasting another 20 years like this. I just hope that she will have a massive stroke or heart attack or something so that she isn't living like this anymore. She always said to 'push me off a cliff' if she ever got dementia, but that's not really an option.

All I can do is hope to god that assisted dying gets brought in, and that if I ever get a dementia diagnosis I can just swallow some tablets and never wake up.

Grieving for someone whose body is still going is soul destroying. I just want my mother back.

Both of my grandmothers had dementia. I'm well aware of the realities

It’s awful. My DM has it and everyone just assumes that there are two stages:

a) you’re a bit forgetful
b) you’re in nappies in a nursing home not knowing who anyone is with the functional ability of a baby

It hurts that there is so much in the middle, where it’s so much more than being a bit forgetful but people have so much more they can do before reaching the final stages.

Absolutely - the day to day is crushing and exhausting as you watch your loved one slowly disappear

FreckledLeopard, I’m so sorry. I feel exactly the same, it’s awful. Weirdly I feel like my “Mum” will come back when she’s gone.

*Weirdly I feel like my “Mum” will come back when she’s gone."

What do you mean?

Namechanged because the poem has my name on it and it has previously been shared a lot so people may recognise me by it, but my grandad has end stage Lewy Body dementia. He brought me up and is more of a dad than my biological one will ever be. I wrote this poem for him.
He's very ill now and I like to think he still knows me, but he hasn't spoken for well over a year and is just a shell of the man he once was. Dementia is awful for everyone. It made me incredibly ill too and I was just looking after him. It takes everything away. That's why I named this poem Dementia the Thief. The second photo is me and my grandad before he became ill. He looks nothing like this now as you can see in the third photo.

Can I ask though - unless it is your current reality and happening to you now, what is the point in ‘educating yourself’? What will happen will happen, none of us know how our parents or indeed ourselves will end up, is there any good in depressing yourself?

Not meaning to be goady, I can only imagine how horrendous and heartbreaking it is. But given there’s nothing you can do apart from be aware of the signs and talk with family members about their wishes if it happened, unless it’s happening right now is it not better to just enjoy life as it is?

Thank you for the thread. DM has it. Terrible for her. The worst thing she could have had. Such a private woman.

It has damaged my health, my family and all the money is going.

Mum was ill for five years before several serious falls meant she had to go into hospital and they wouldn't let her out. Panics, confusion, hallucinations, losses (money, jewellery, keys, handbags), fear, injury. Just imagine the world goes mad around you - because that is what it is like for the person with dementia.

She is in a lovely care home now. The staff are so good - but it is horrible for her. I wish she would die. She does not really know who I am. I wish we could just give her a drink and she would "go to sleep" with dignity. That is what I want for myself too - as I am sure I am going to get this disease - I feel I am losing some of my language skills already. Terrified.

CustardySergeant I find it hard to truly remember DM before dementia when I see her like this. I hope when she passes that the memories of her as she would want me to remember her (before dementia) will come flooding back over the dementia I see now. It happened with DF, I find it really hard as I wonder if I’ve buried so many cherished feelings as a way of being able to cope with her illness.

@paintedfences I think OP means from a family perspective. A lot of people don't realise what we have to go through. The toll it puts on family life. The reasons why we can't go out for meals or drinks or even meet up at the park with our kids. The sheer exhaustion that we feel because of what we do. People have this idea that granny puts the keys in the fridge because she's a bit forgetful. Whereas it's so much worse. It's shit smearing, it's abuse, hitting, swearing, punching, kicking, constant crying, hallucinations, paranoia, and absolutely no sleep for days on end. And that's just some of it. You dress them because they can't dress themselves and they somehow take it off. 15 times a day. You go to the toilet and leave the door open because you're scared they're going to try and light the hob, or worse, not light it and leave the gas running.
I think OP means it would be nice for people to know all we go through and the reason that we decline every invite is because we simply can't leave them. And we hate it when the invites stop because then the dementia has stolen our lives too.

@Mayborn I feel this way too. I hear you.

Mayborn - I know what you mean.

The aggressive, dirty, weird old woman who doesn't know me or my kids, who never says "Thankyou" for the flowers I bring her every week, who is rude, who cannot maintain any form of conversation is NOT my mother.

My mother used to be a bit silly, a bit fussy, houseproud, always nicely dressed, always offering tea and cakes and remembering birthdays, chatty, so friendly, never said a bad word about anyone.

When this "imposter" dies then I hope I can once more remember my mum as she always used to be.

it truly happened with DF, and it felt like grieving all over again but I was so happy to realise those memories of those special times were still there. I thought they were lost. It’s awful, I feel guilty wishing it would speed up but I know this isn’t what she would want either

Cleopatra she sounds like she was absolutely lovely

I recently trained as a Dementia Friends Champion (so I can deliver dementia friends sessions). I haven’t had to directly care for someone experiencing dementia but my lovely nan-in-law had it and so I have seen the impact it had on her husband and the heartache it caused.

For me, taking the course was useful because I know that the more I know, the more understanding and kindness I can show to those around me.

You can do an online ‘dementia friends session’ or sign up to a local face to face session if you are in the U.K. They are only 45 mins long.

www.dementiafriends.org.uk/

Thank you Mayborn - She was, (most of the time -). Always slightly disappointed with her scruffy, sloppy, untidy daughter who liked nothing better than to point out other people's failings!! But she was a good mum.

Currently discussing this with my teens. I have made it very clear what I want to do for myself - and they both suport me.