My poor mum's life has been destroyed by Alzheimer's but it's ruined mine too.

[KiwiGolden]

As well as my poor dad's life and my sisters too. Mum would have hated this.

Over the last 8 years my thoughts have always been for my dear mum, I have gone out of my way to help her on this dreadful journey because she was the best mother but it's taken a massive chunk out of my life and I will never get that back.

I know that I somehow need to shelve this thought process but I now live in complete fear of getting this evil disease. I feel that witnessing what this does to people has left me with a kind of ptsd, sorry if that seems overdramatic but it's genuinely how I feel right now. I don't want my brain's functions to be slowly eradicated, to lose the ability to communicate my most basic needs, to end up double incontinent and have to rely on other people to do the most personal of personal care for me.

Mum has just come back from a two week respite stay in a care home and that experience has terrified me even further. The home was lovely with great reviews, a great QCC rating and decorated homely and cheerily but was the most depressing place I have ever been in simply because it was full of (sorry to say), zombies.....men and women who used to have jobs, friends and social lives. These people once raised children and kept households, travelled and did 'stuff' without giving it much thought but now there is no life left in them, just their shells. They need help walking back to their rooms because for the umpteenth time that day they have forgotten where they live and who they are adn are just wandering. Having to be hand fed, toileted and put to bed like young children. It was heartbreaking and terrifying at the same time. I sat next to a lady yesterday who was at the table just shovelling custard in her mouth as though she was a robot, there was no life in her eyes, I smiled and spoke to her but there was nothing there, she was just staring into space whilst spoon went to bowl and to mouth again and again as though she was pre-programmed to do so. I wanted to weep for that poor lady.

Mum was diagnosed in 2018 and since that time I have nothing positive or encouraging to say about dementia and will now live the rest of my life in fear. Every time I forget a name and struggle to find a word, mislay something or repeat a story a flash of panic will overwhelm me and sink me that little bit further into the fear. I am currently in counselling but it won't help me erase the fear because unlike those who have never had the misfortune to see what dementia does, I have and it terrifies me.

I know that no disease is fun but dementia is just insidious and heartbreaking.

I am so sorry you are going through this. Seeing our parents get older and dying is horrific, but dementia is the cruelest of diseases.

I am so sorry not to have words of comfort as I think it is absolutely horrific that people are allowed to ‘live’ like this.

Murderers and child rapists have human rights….but we don’t afford the basic human rights to dementia patients and their families by allowing assisted dying. What sense is it to keep those with severe forms of dementia alive other than it is a business model for care homes?!

My mother lived with dementia for ten years and the one strong positive I got from it was meeting the carers who looked after her. She was in a care home for seven years, and initially I hated visiting, I found it overwhelmingly sad, depressing and slightly frightening.

But after a few months I became accustomed to it, and got to know the staff and residents. And all I could see was kindness. The staff were brilliant, and there was often humour too.

For the last two years my mother was alive but not living, she was just existing. Immobile, doubly incontinent, and she had to be fed. I support assisted dying, but that is hard with dementia patients because it would have to happen early when they are still able to understand what it means. And my mother wouldn't have agreed to it anyway.

My grandmother and mother both had dementia and if I live to be old enough it's probably inevitable. So I hope something else gets me first. But there is not a lot I can do about it either way.

I’m so sorry and can only sympathise. My mum was diagnosed about six years ago now. Have you asked what caused your mum’s dementia, because it’s not all the same. My mum’s was caused by her refusal to drink enough or accept that she had high blood pressure, over many many years. The front part of her brain is completely gone but at least I know it’s not hereditary. The relief was immense, so truly, I do know how you feel. Other than that I have little to offer other than I have always hoped (I’m not a clinician so it is only a hope) that those in the end stages of Alzheimer’s genuinely don’t know what’s going on and as long as they’re not in pain it’s harder for those who love them than it is for them. Sending support x

I can relate so much to your post.

My Dad was diagnosed 10 yrs ago and started on medication to slow the Dementia down. No idea why as he has zero quality of life. Hes been in a care home for almost 2 yrs at £8k a month. Its hideous, depressing and I literally fill with dread at the thought of visiting him.

I really worry about being diagnosed with Dementia. If i do, I will 'take myself to Switzerland'.

I know just how you feel with the worry. I lost my mum to dementia four years ago, and find that the loss is still almost as acute today. I can never forget how my loving, strong, funny mum who was capable of doing just abkut anything faded away in the space of a couple of years and turned into a paranoid, angry shell of herself who thought she had half a dozen strangers living in her house, including her mother. I’ve also got dementia on my father’s side of the family so the fear of developing it myself is never far away, and like you, OP, I find myself worrying every time I forget a word or forget i was going to do something. Dementia really is the most horrible, cruel way to die, and the only comfort I take is thst it progressed quite quickly with my mum and she didn’t suffer for years and years like some others. My mother in law also had dementia, realised what was happening to her, and took herself off to the doctor. It progressed incredibly quickly with her, and she was terrified, having watched her own mum gojng through it. She deteriorated in huge steps and I can still remember the final lucid discussion I had with her - my husband had taken her to the dentist and she phoned me when he was on his way home to tell me that he must get the power of attorney processed quickly bwcause she wouldn’t have the capacity to consent to it for much longer. She was never able to use the phone again after that day.

My friend is in a nursing home and is one of the few who doesn’t have dementia. I hate visiting, it’s just so sad to see once capable people, just empty shells.

oxfordhealth.nhs.uk/news/new-shingles-vaccine-could-reduce-risk-of-dementia-major-study-indicates/

I agree OP, which is why I am an active supporter of the assisted dying bill. Have a look here to see how you can support it:
www.dignityindying.org.uk

It is shit. The only spark of goodness in it is in the people who look after your loved one - and that includes you.

Dh and I already have POA for each other, and I have made it clear to him that if I come to the point where I am existing, not living, then I only want paliative care. We need to clarify what this means, and put it in writing. And we need to talk to the dc about it. They're all adults now, but I'm not sure that some of them have the emotional maturity and good enough mental health to cope with such a revelation...yet.

I'm also giving serious thought to what you said in the last line of your OP. I haven't made that decision...yet.

I'm looking after my mum now who has had vascular dementia and Alzheimer's for about 6 years. It's heart breaking and is ruining my life as well as hers. I'm the only family member involved in her care and it's a very heavy burden even though I love her. Social services have said she's not ready for a care home yet so I'm constantly stressed anxious and worried what the next catastrophe is going to be. I haven't got children so no one will be around to do what I'm having to do for mum including bathing and personal care. I'm hoping to have a good 25 years and then take myself off for assisted dying because there's only confusion, humiliation and a slow death to look forward to if i get dementia. It's very very sad.

I'm sorry, it wasn't the last line of your OP. It was the last line of @TheGruffalosNan post, where she mentions Switzerland.

It's utterly grim and cruel.

I watched my late OH go completely bonkers - he was not my OH; just some poor suffering creature. It was hell for everyone.

I can only send a hug.

Maybe we just live too long ......

Agreed. It’s inhumane to keep people alive like this. I have a really vivid memory of sitting with my relative as they were dying, in the next room there was a woman with dementia who had been a resident well before my relative moved into the home, and they were there nearly 9yrs, so god knows how long this poor woman had been there! The staff were cajoling and bulling her into eating and listening to it through the wall was torturous - it'd have been far kinder to let her die peacefully but that doesn’t seem to be allowed these days.

I think once my kids are established adults, I would think carefully about having treatment for cancer or similar such is my fear of surviving that and then going on to get dementia!
I have a scientist friend who works in brain research, they say there will be breakthroughs relatively soon, and tests to determine how at risk you are. Knowing it was coming would give you a chance to get your affairs in order I suppose…

Your post has made me well up. It’s insightful for someone like me who has no experience in dementia. I’m sorry your experiencing this

You are not being over dramatic at all and I am so truly sorry this is happening to your family and for everyone else going through this.

My mum had a potentially genetic neurological disease that usually kills in years. She lived for twenty and even then it wasn’t the disease that killed her. Along the way she developed all sorts alongside. It was a constant living hell and has cast a massive shadow. Dad dropped dead with the stress of it all and the rest of us are so traumatised by the whole thing we no longer speak to each other.

I have no wise words. The terror of ending up trapped in my own body and how I might die is overwhelming if I think about it. If I was brutally honest there’s a secret bit of me hoping for a quick illness or accident and get it over with rather than face what mum went through. It’s all made me go a bit funny in trying to throw myself at life more but I don’t know if I’m just trying to outrun the terror.

Not over dramatic, it's hell.

I go to care homes occasionally for my job and I want to cry every time. It's wicked 😞

Yes, I agree. I don't have personal experience of a loved one with dementia but I have worked in care homes, including ones at the cheaper end of the scale where the quality of care can be quite poor.

That experience made me think I definitely don't want that for myself. The only people who benefit are the owners of the care homes. So I've looked into voluntary assisted death at Pegasos in Switzerland, as they will help people who don't necessarily have a terminal illness. There are a number of AD organisations in Switzerland with different rules.

This isn't for any time soon and I understand that I might leave it too late to travel and there are many pitfalls. But I do find the thought of it quite reassuring.

When my cat had dementia, was doubly incontinent and living in a bed in 1 room I took her to the vets where she was put to sleep in my arms.

I watched my mother suffer far more than the cat for 2 years in her care home. Also dementia, incontinent and unable to walk

My grandmother also had dementia. I am 60. I have kits made up in several places with instructions to myself about what to do if I get a diagnosis.

my family know and fully support me

My dad was once a fiercely intelligent, articulate man, highly politically and culturally engaged. I weep for what this dreadful disease has taken from him.

I used to be a professional carer too and it was devastating to witness families having to revolve their lives around caring for their loved ones. I remember one woman, she was so calm and beautiful and bird like, like a ballerina. Her husband was devoted to her and did almost all her care. He told me she'd been a renowned costume designer before her illness. I could just imagine it. But by that point she had no quality of life. Just terrible.

@KiwiGolden i am so sorry for everything you and your family are going through.

my dad died of dementia but it was over blessedly quickly - really less than a year of it being unbearable for all of us.

it is the most awful disease. Like others it has made me a passionate advocate for assisted dying and I will be taking myself to Switzerland if I get a diagnosis.

Oh OP, you sound a wonderful, caring, kind hearted daughter. Your poor mum. Poor you. 💔

Dementia is dreadfully sad, a horrendous condition, I agree. Anything neurological makes me sad, particularly as I have personally had three concussions, and been injured permanently by an off label antipsychotic prescribed after my first concussion, that gave me a movement disorder.

Having experienced horrible cognitive symptoms during my post concussion syndrome, I'd never want to live with dementia in any way. I've told my husband to get me to Switzerland if necessary.

Sending you huge hugs and love. I truly hope you can find some ways of getting comfort for your family, and especially your mum. ❤️🥺

I’ve made it clear that if I get dementia, loosing capacity and assisted dying isn’t legal in the U.K. then my loved ones need to state that I refuse medication even for chest infections (I’m prone to) to hopefully speed up my demise. I don’t want medical interventions to prelong their agony nor the cost to either my estate (I’ve got a decent amount so would cover 10 years or so) or the state ultimately

It’s awful OP, my mum is now in nursing care, non-verbal, doubly incontinent and no real idea who anyone is. She’s met my children but doesn’t know who they are and will never be a gran to them in the sense that my DH’s will, that’s the bit that breaks my heart the most as she would have done so much with them.
It really is the cruellest disease and it was her worst nightmare, which in itself feels the more distressing part.
I may get it in the future but I suppose my attitude is that I’ll live as well and healthily as I can (non-drinking, non-upf diet) to prevent or delay where it’s possible and stay around for my kids.
I’m sorry OP, it’s tough and I feel for you.

I completely agree. Unfortunately there's such a taboo around voluntary assisted dying in the UK that this situation is likely to continue indefinitely and become more common. It's tragic that once capable people end up like this and the only ones who benefit are the owners of the care homes. It's not even as if they are always well cared for. I've seen older people in these situations being neglected and bullied.

And yet mention voluntary assisted dying and people throw up their arms in horror and start talking about safeguarding. They don't realise how bad it can be for people in these homes.

Just glad the Swiss take a different view.

I know its very difficult but I can't bare the idea of needing care abd I don't have the savings my Dad did or property to sell.

My Dads care home looks amazing but the quality of care is so poor. Unfortunately my siblings don't agree with me so hes stuck there.