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 are talking about an horrific disease which as good as turns people into zombies, completely strips people of their dignity and humanity, numerous people have said similar things on this thread, it seems to me that all those who have witnessed this disease would want to be euthanized before it took a hold of them
obviously I get why people are offended, but surely you can see the parallels with apocalypse scenarios? If we don't have facilities to properly care for rising numbers of dementia patients what will happen?
a previous poster said that parts of dementia are so horrible that people who witness it censor themselves, when I talk about zombies I am just trying to illustrate the horror of this illness, the horror that everyone else speaks about, here you are trying to censor me

Bombom but don't you think the word "zombies" is very poorly-chosen in this context?

I can see see that what I wrote was at best skirting the line and so I apologise unreservedly for causing offence with my post.
If people on the thread feel that it should be taken down then please go ahead and report said post.

Seeing my beloved mother compared to a zombie wounds me to the heart. You really should have thought before you posted that. And I’m not reporting it, I think it should remain as testament to how cruelly some people regard the sufferers of this awful illness.

My husband has early onset Alzheimer’s and the effect on our lives is awful. I never understood dementia before and this has been a rude awakening of what both patients and carers go through.

I would not wish this disease on anyone . Before it affected my husband I knew very little about it so I understand that other people will be unaware of the true effects. Early onset travels faster than age related dementia and watching my husband go from being an intelligent active man to being a bewildered shell of what he once was in under two years in heartbreaking.

We had so many plans for our retirement so now I always advise people to live for today. Don’t wait for the holidays and don’t put off doing things you enjoy. Live your life and appreciate each other.

I will never forgot the looks of pity and condemnation from strangers in Costco when my mother (who has Alzheimer's) was having a tantrum. The reason was that I was trying to persuade her that buying a litre bottle of sherry wasn't necessary. If she was a toddler I'd have got some sympathy and understanding perhaps. They couldn't see she was ill, so they didn't know she could down that bottle in minutes, fancying a glass and forgetting she'd already had 5. Neither could they see we had large stashes around the house from hiding previous purchases. Neither did they witness me breaking down in tears after a prolonged tirade of the abuse directed solely at me for hours. All they saw was a young woman telling her mother what she couldn't do. Ignorance is definitely not bliss x

@Kiki275

I cared for a lady with the same sherry difficulty.

Fortunately this particular lady couldn't get to the shops herself so whenever she asked if I'd bought any I used to tell her that the shop had run out.

I poured away all the sherry in the house and she eventually forgot to ask for it.

It had been a big problem as when she had access to it she could drink most of the bottle in a couple of days. Her previous carer thought it was unkind not to let her drink alcohol.

Several posts up (before bombom) the word 'zombie' was used without any comment. So I'm assuming it was used in that context?

I remember my Mum also liked the odd glass of wine, but got to the point she was drinking a bottle a day because she simply couldn't limit it. It was always just a glass or two but the second glass kept repeating.
It stressed me hugely as it was a huge financial drain which she couldn't stop, so I was always buying shopping for her as she'd burn through any cash in a matter of hours. It was also not compatible with other medications and despite her understanding this perfectly when we spoke about it, she'd get to 6 or 7pm, fancy a glass of wine, toddle off to the corner shop and then happily drink the lot.

@TheMustressMhor it wasn't just sherry, she'd drink anything. I've seen her drink neat vodka/gin. Fortunately if she couldn't see or find any, she was fine and unlike @Beamur she wouldn't go buy some. The financial impact was hard. She is now in a home and the benefit to her mental & physical health is enormous x

I've worked with carers and the stories are beyond heartbreaking. The difficulties in getting help and support, the 24 hour nature of it, the fight to get respite. Before all that difficulties in getting diagnosis or in even getting the ill person to their doctor as they don't realise they're ill or they're too scared to admit it.

Then there's violence, physical and verbal, and abusive behaviour, in some cases husbands with dementia forcing sex on their wives.

I've also had family members with dementia, but that's too difficult to talk about still.

Kiki275
A friend of mine, whose Mother also had a social drinking habit that became very dangerous due to dementia has had her health improve considerably (with respect to alcohol) since going into residential care. She was drinking litres of vodka a week but has now effectively dried out and doesn't ask for it.

My DGM had Dementia, I was her main carer for 3 years. The massively hard bit for us was nearer the end when we'd determined that she couldn't stay in her own home (barricading doors and severe falls) but we didn't have POA because of her early stage paranoia. She developed Agoraphobia early on too.

Social services refused to accept she was that bad and as she kept telling them she wanted to go home, that's where she went. Except her home for the last 30 years wasn't where she meant, she meant back to Essex with her mum who died in the War. I turned up to find her covered in blood, denying anything had happened but seeing a huge cut in her leg. I stopped taking my son over when her language got too bad, and I lost count of the midnight callouts to get rid of the 2 men in her lounge (the TV).
She didn't recognise me for the last year. She thought i was a distant relative or a work colleague. She'd stopped eating and drinking, and i signed a DNR when she was eventually granted a nursing home place.

The guilt i felt for being relieved when she passed age 94 was overwhelming. She'd been asking for her mum and sister the day before, apparently they'd been visiting her.

I don't even think my dad (her son) or my brother had any idea what it was like to care for her on a daily basis.

There needs to be much more support given to families of sufferers.

My mum's new carers started yesterday. She rang me tonight and said she was confused about where she was living and wants to go home. I keep telling her it is home. She says why did she buy the flat? And so on and so on.

This is new for her, she's always felt safe and happy in her flat and now she doesn't recognise it. What do I do? I can't bear the thought of her being so disorientated and waiting to go back to a home that doesn't exist, but there's nothing I can do to soothe her?

Distraction is your best bet Blu. Talk about something else that usually gets her interested. The worst of this is that sometimes you just can't soothe them, full stop.

I would really recommend the book Contented Dementia. It is absolutely brilliant, full of useful tips and deep understanding.

Helped me enormously.

I have got the Contented Dementia book, it's great.

The trouble is that mum isn't quite far gone enough that I can say almost anything to distract her - she's bewildered but still has some awareness, so right now I don't think she'd be reassured if I pacified her with something like, you're going home at the weekend. It wouldn't ring true to her and she'd feel anxious.

She also doesn't make statements (like "I don't live here"), she says "I'm confused about where I'm living."

I suppose if I try a technique and it goes tits up, she'll soon forget (that I've lied to her, hopefully) and I'll get to have another try at saying the right thing next time.

YANBU.

living this at the moment, i seem to spend my time on the edge of tears. I am not able to do much this month but have booked time to see DM in October, supporting Dad to care for her when he is also terminally ill - the sick caring for the sick, its taking weeks to get SS approval of carers and Direct payments set up the system is too long winded and its bringing Dads death nearer rather than caring for the two of them.

Mum is sometimes there - there are still glimpses but she is rated severe, she is struggling with mobility, anxiety, aggression, no controls but at the same time she s bored and wants variety but then has moments of lucidity where she talks about living at home no longer being an option really and she needs to go into somewhere just for a break from it all without understanding she will likely not come out again. Desperately sad and I absolutely will be going to Switzerland. AM in floods now.

Appreciate I am now reviled because of what I said earlier in the thread (I did apologise for the offence caused) however the personal accounts coming from people dealing with this are horrifying, I evoked a horror movie scenario because those dealing with this do seem to be living in their own private apocalypse.
Lots of people in their middle years will be traumatised from long years of having to wrestle with this.

@Beamur that's really good to hear. It's strange because I'm pleased that my mum is as "well" as she can be, whilst also knowing it'll prolong the inevitable slow undignified death by dementia. She was facing a cancer diagnosis, which turned out to be a pre-malignant polyp. Couldn't decide whether to be happy or sad about it x

Bombom FWIW I wasn't especially offended by the scenario you were trying to articulate and I knew what you meant - I'm not minimising others feelings at all but I'm a bit taken aback by the strength of reaction to your post, when (my interpretation of) your intention was only to articulate a dim future if residential care continues to become more scarce.

I was far more offended by a post earlier in the thread about dementia being a self-inflicted, potentially avoidable disease! I am rarely affected by what randoms say on the internet but that gave me the genuine rage temporarily - but I'm glad I didn't type out an instant reaction as that poster came back to clarify, so actually it wasn't quite what I thought they meant at the time!

RB68 Its so hard isn't it. I haven't done any crying yet - I am very focused on the practicals at the moment. I haven't grieved for mum yet because she is not totally lost, I still see her in there although her original version is drifting further away. Leaving me with a shell who looks a bit like her but has a completely different personality.

Tell you what does threaten to derail me, and that's seeing other women of her age walking around normally having normal conversations and going about their daily lives without any confusion. Just passing an elderly lady on the stairs and exchanging ordinary talk about the weather briefly, made me feel like if I cried because mum can't do that anymore, I might never stop.

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

Kiki
I understand. My Mum actually died of cancer, which I was actually quite relieved about. It massively exacerbated the dementia in the last few weeks of her life. But her quality of life was pretty good until the last 2 weeks.

Mum actually has a hospital appointment tomorrow further to her sporadic bleeding. GP has warned us that there is a chance it could be "something nasty" so I am prepared for the worst. Although of course it could be nothing.

I'm more stressed about getting her out of the flat, into the car and then through an internal exam and pelvic scan. She's going to be completely baffled by all of it.