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.

Lots of people support assisted dying until the time actually comes. Many elderly people in hospital blanche at the mere suggestion of filling in a respect form, which can only benefit them.

staff at care homes cannot just not feed people , the same family members who think it’s cruel to keep people alive also think it’s cruel to not feed people or provide them adequate care , it’s astonishing how long people can stay alive on the tiniest amounts of sustenance.

advance wishes would need to be made when people still have capacity, can you imagine how they would decide their parameters? many people haven’t even made a will.

there is also absolutely no need to ‘ take yourself to Switzerland’ it’s perfectly straight forward to kill yourself quietly tidily and painlessly if you want to . We are also allowed to refuse medical treatment such as antibiotics but very few want to do that either . I don’t actually think people have the appetite for it in real life tbf .

So am I.

I am furious that we don't have a choice.

OP, just to say I have listened, I totally sympathise with, your feelings are understandable and 100% valid, and it is NOT dramatic to describe the impact as having ptsd.

My sister has had ongoing MH problems after being the sibling who took most responsibility when it happened to our parents. (I also did everything I could as did other sibling but she was more frontline due to circumstances)

What choice is it you want that you don’t have now, because you can choose to die any time you want to, straight after an Alzheimer’s diagnosis if that’s what you wanted.

I just want to say I understand and you have my utmost sympathies. We are not quite at the stage where you are with my MIL but not far behind. Our issue is that she could be nasty, manipulative and aggressive occasionally before she got illl, now she is simply a shell with those nasty qualities left. All goodness has gone.

I totally hear you OP. It’s just so awful. My brilliant, funny and amazing dad went into a care home with specialist dementia ward five years after diagnosis and lasted three months there before he caught pneumonia and died. For that we are grateful that he didn’t suffer on and on for years. He hated the place and was always trying to escape or pace up and down the halls. Just so sad. And it was a v good home.

I’m so sorry for all of you who have watched a loved one suffer.

Right now, 2 people that were important to me are in the throes of it. One is a brilliant, highly involved woman who told me a thousand times to shoot her if she ever ended up like this. And here she is, “like this”. The other is a friend who was a highly regarded local business man who everyone knew. Just a shell who smiles at you now. The people close to them (a daughter in one case, a wife in the other) have no life any more.

DH and I have had the chat as his mum had Alzheimer’s and he’s terrified he’ll get it. No life prolonging measures. No medicine and no spoon feeding for years. Let nature take its course, hopefully quickly.

And for those of you who think you’ll have the capacity to take the decision into your own hands when you think “it’s time” read the book, Still Alice.

@BeSharpHelper

I agree with all you've said. I support assisted dying and would want it for myself. But when the time comes, will I? I have no idea. But I know my elderly neighbour always said if she was diagnosed with dementia she would end it all by walking into the sea. She lived near the sea so it was entirely feasible, but she didn't do that, she died in a care home.

My mother (when still able to vocalise her wishes) would not even countenance a DNaR, so there was no chance of her going near advance wishes or assisted dying.

And you're right of course about staff having to feed residents. I disliked seeing my mother fed, but the only other option was watching her starve to death. And if she wanted to refuse, she would clamp her teeth together and that was that.

The care home were sensitive and realistic, they only offered palliative care for the last two years, no hospital trips or interventions. Unfortunately she just stayed alive regardless. As you say it is incredible that people who seem to be hanging by a thread just carry on.

You say that like it’s easy. Many people who try to kill themselves fail and then live in a worse, damaged state than before. I know someone whose adult son had serious and enduring mental health problems and tried to kill himself by jumping off a high building, which you would think would be a pretty certain method. He survived, and is in a wheelchair for the rest of his life and still has all the mental health issues he had before and likely more besides. It is absolutely tragic.
Aside from such dramatic examples, people killing themselves often involves distress to onlookers, those who discover their bodies, etc and that is a reason they don’t take that path, but want a planned and humane alternative.

My Mum is well into dementia. Looking back it's been going on for years.

We never made the promise others do... 'We'll never put you into care.'

She was at home for ages, with the occasional weekend in respite care. As her condition deepened her needs got beyond our capabilities - despite having cares visit 3x/day.

My sibling lived 1 mins walk away and would visit and cook 4-6 times/day. I lived away and would live with her 3 days/week.

Going walkabout at 6am and no sense of a time was a further descent into pushing our capabilities.

Her respite home had a full time vacancy and we took it. She settled in, never questioning.

We're familiar to her and she says odd things but most conversation is gone. But she does smile and positive things come out of the fog.

Her home is quite small, she's looked after and cared for. She has a better quality of like than was the case.

She is in the process of leaving the room and closing the door.

It is hard - particularly if you remember the earlier/good times. But aging happens.

So every sympathy for those with demented parents/partners. Its not something that I would have chosen for my Mum - but its happened and we're coping as best we can - as others do.

Whilst her filters have gone she was a mild and pragmatic woman so we have had a gentle time - no fighting, shouting, distress etc.

Thank you all so much for your replies. I am so sorry you have all had dementia come knock on your doors, my heart genuinely weeps for you all. Despite lots of radio and tv ads I feel that It really is still quite a hidden disease, so many people who have been fortunate not to know the horrors of dementia do still appear to believe, as I did before 2018, that it's just a touch of memory loss and then the sufferer goes 'do-lally', whatever that is suppose to mean? However, the reality is so much harsher and difficult to deal with not just for a month or two but year in, year out as we all sadly know too well.

When they announced the other day Patrick Stewart had died from a 'brief' experience with dementia all I could think was how fortunate he was not to have endured the full journey of dementia and the horrors that accompany it.

During my mum's journey she has experienced several falls including a very serious neck fracture, a heart issue and a breast cancer diagnosis. And although her body is falling to pieces, as frail as a sparrow and her brain is wracked with plaques and tangles and whatever else Alzheimer's damage does her body still carries on living, long after she wanted to die. When she could speak and it made sense she would tell me every single day that she wanted to die and if I could have taken her somewhere I would have put her out of her misery, just as I did my dear dog 4 years ago when his cancer was riddled throughout his little body, I held on to him as the injection went in and knew we were making the right decision but we can't do that for our human loved ones. I hope and pray if I get this disease this country will have made some changes by then.

Who would want to live like this? Not only does it destroy lives it takes everything you've got mentally, physically AND financially. For the last 16 months my mum has been spending almost £4k per month for home carers and it will cost even more if and when she eventually goes into a home. I don't blame carers at all, most are earth angles if you ask me, a sector many people don't want to go into and the pay rewards are not exactly enticing. To work every day in a care home would break me mentally, they do wonderful work in very tough conditions. We are fortunate that mum has always been very compliant and easy going but from what I have witnessed in care homes I know that sadly not all dementia patients are easy like mum is.

I have made a living will, I don't want my dc to be heavily involved with my care as I have been with my mum's, I won't do that to them. I hope that will be my legacy to them.

I totally get how you are feeling - I felt the same with my mum. I hate the fear of getting it myself. I take some solace in the fact that scientists are realising that dementia can be prevented in many, many cases by simple changes to lifestyle - checking on hearing; strength training; getting good quality sleep, good nutrition; keeping up with friends and learning new things that are difficult. I am trying my best to include these things in my life and keep my fingers crossed.

I totally agree. I also know someone who tried, unsuccessfully, to take their life and now they live with the consequences. When it comes to diseases with no cure or even respite from the disease, when we all know it will become a hellish thing to live with we should have the choice to be able to go somewhere where there are medical staff trained to administer drugs in a way where death is guaranteed and not left to fate and without some poor person having to find your body.

DM lived in a nursing home for 7.5 years after a massive stroke. She had some brain damage (not dementia but devastating, her life was ruined. The pain for her loved ones was vast, too ) .

Visiting that nursing home made me utterly determined to end things pretty soon after any diagnosis like Alzheimer's. The poor souls I saw wandering around in a daze, all their independence and dignity gone, was truly horrifying. It broke my heart, to be honest.

I’m looking after my husband who has dementia. You are doing an amazing job but there’ll come a point where you just can’t keep setting yourself on fire to keep your poor mum warm. I think you should challenge SS as your mum clearly needs more help now than you should have to give. SS will lean on you but you are putting your own health at risk. Only you will know when the time has come but when it does, call SS and let them know that you just can’t, and are not prepared, to carry on any more. You are entitled to a Carer’s assessment of your own needs. Wishing you luck, I’m following in your shoes. 💐

My mum looked after herself very well but one thing I am convinced was the cause of her dementia was decades of insomnia.

The choice to die with your partner, and loved ones close, holding your hand. Without the fear that they will face legal repercussions for aiding you. And actually, you know, die. As opposed to a botched attempt. There’s that for a start. Are you suggesting they jump from the nearest roof?

And that's what I will do.

So I will lose possibly years, because I will have to kill myself whilst I am still well.

All the things I will miss out on because other people want to control how my life ends.

My mum had five years from diagnosis to the point where it started to not be good- she saw her grandchildren be born, she was happy.

People like you will prevent me from having the same- because I will sacrifice my five years to prevent me and my children from going through what my mum went through.

It genuinely makes me sick, the arrogance that other people have in regards to choosing how my life ends.

Terrifying thread as as both my parents have cognitive decline (parkinsons and dementia) but are still living independently by being each others careers essentially. They still have some quality of life and love each other but they have lost capacity for financial matters, admin etc.i dread what's ahead for them. I also fear it for myself and my children too. Would love to be able to pass away peacefully with my loved ones if the time came..

MIL has recently been diagnosed with dementia. She is already in care being riddled with osteoporosis and barely mobile. She is warm, clean and fed, God what a low bar. But this is what modern medicine has done. Prolonged life in the millions past when it should often have naturally expired. To what end?
We just don’t seem to want to let anyone die anymore, resulting in terrible personal and financial cost to families and society.
Difficult discussions needed. Nurse of 37 years.

KiwiGolden - likewise - its a big worry.

Do you work in healthcare @BeSharpHelper ?

That's not very kindly worded. Everyone should have a quality of life. What someone else decides to do to end their life may not be your responsibility, nor may you give "less shits", but perhaps you could have worded it a bit more tactfully.

If you develop dementia you would also have to choose assisted dying 'too early', when you were still well and considered to have the capacity make that decision. That is how it works at Dignitas, and presumably it would be the same in the UK.

Which is why it is so difficult, because when you are still relatively well it is a decision you don't want to take - yet.