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.

This is an interesting post and I think you’ve made some really good points. My only question would be I’m not sure how someone can do it themselves quite easily without going to Switzerland.

I've been through the whole journey with my MIL, it's genuinely the most traumatic thing that you can witness.

She was in a home nearly 5 years and it wasn't until we were doing a 24/7 bedside vigil as she was dying that I realised it was actually worse than I ever imagined.

Every evening around 8pm it was like The Walking Dead with several residents wandering aimlessly sundowning. The staff were frantically putting dressing gowns on the naked ones, trying to reassure others who had no money that they didn't need to pay for their 'hotel room' that night, another desperately wanting to phone their girlfriend etc.

I'm also terrified of going that way and desperately trying to keep myself as healthy as possible with fitness, nutrition etc.

It’s as if she’s watched too many movies to say she would walk in to the sea. I couldn’t think of anything worse than drowning. I’d rather jump off a bridge and hope it would be instant.

My MiL is in a nursing home with dementia. The carers are lovely and kind but I hate visiting. Her room is full of pictures of her in her younger days looking happy and glamorous. In the bed is a shell of a person - painfully thin, unable to speak coherently or recognise her family.
If she does get out of bed she's sitting in a day room, asleep with her mouth wide open.

It's heartbreaking and no idea how long she will go on like this. I hope this never happens to me.

My dad dropped dead of a heart attack and my mother was in hospital for 5 days before they died. Far preferable.

Yes, it was a reply to your post. But I won't continue.

Op, I am sorry, I shouldn't have detailed your thread, it just hits a nerve- I am sorry that you are going through this

Logistics. There aren't any bridges round here to jump off, but she could walk to the sea in five minutes. I don't think it's a bad way of dying in theory but you'd probably end up swimming back to land rather than let yourself drown.

I hear you OP. One of my parents had dementia and died after a very difficult 4 years of caring for them at home. Four years seems short compared to some of the stories here. They died two years ago but I, too, feel as though I have some kind of PTSD. To the outside world I was an absolute trooper who got on with it and never complained. Inside I feel devastated and deeply scarred by the experience. I wish there was some kind of support group that I could just to talk to other people who understand what it was like, and make space for others to talk. It feels ridiculous saying this, especially as I’m through the side (so to speak) but it haunts me.

And it's very common for people with early Alzheimer's to think there is absolutely nothing wrong with them because they don't remember forgetting/getting confused.

Fair point about logistics. I think you’re right, it’s as if you’d melt away walking in to the sea when I reality the coldness would hit you like a ton of bricks and it would take some will power to stay there rather than trying to swim back.

@countrygirl99 yes you're right it's extremely common. Many people with dementia refuse to acknowledge it.

@KaplanCarr yes agreed re the cold hitting you.

I already support AD, but I don't think that the bill that was voted down would have done anything to help patients with dementia, I don't think?

I will be going to Switzerland. I just feel sorry for the people who cannot afford to.

My DM started showing signs of something being wrong in her mid 60’s and was diagnosed with vascular dementia when she was around 67.

She is in an amazing nursing home now, I did spend around four years looking after her at home (shared with my sibling).

She may die tomorrow or maybe in a few years time, I try not to guess when anymore. We have a ceiling of care in place and she is not for any active treatment. She will never go into hospital and will be kept comfortable at the nursing home.

I have managed to turn my thoughts process around and I now really make the most of my one life.

Tbh osteoporosis is not a killer, in the olden days she would just be in pain and would then die from sepsis from an untreated fracture. I dont think you would want that for your mum.

This where my parent is at.

Angry, confused, bewildered and upset - glimpses of the person they used to be. But still ‘capable’ of living ‘independently’. They were even refused attendance allowance which apparently is unheard of!

They are not living independently - they are managed carefully by sibling and I. They are not looking after themselves properly but won’t accept help because ‘they don’t need it’, and because they still have capacity, we can’t override their wishes.

Meanwhile they are medicated up to the eyeballs and I often wonder why? What are the different meds trying to achieve? Eg statins? Quality of life is not going to get any better than it is in this moment, it is only ever deteriorating.

Yesterday, whilst waiting for the taxi to come and collect mum we sat in the lounge area. Mum was sat at a table with another two ladies and one said to me that she didn't think my mum was well because she hasn't slept for days (I don't think she'd met mum before yesterday). I said "Well she's going home today so hopefully she sleeps better once she's back in her own bed". I deeply regret saying that because as soon as I did this poor woman was begging me to take her home too, she seemed so upset and it broke my heart and I can't stop thinking about her or the lady sat on the opposite side of me shovelling custard in her mouth like she was a broken machine on repeat.

All my grandparents died either instantly or within days. I count them as the lucky ones.

I agree 100%.

Hi bababamama You need to discuss your medical wishes with your GP or a Practice nurse. The document is called a Respect Form. My father had one and he had his copy at home. It was really helpful when he was clearly unwell and not happy. I was able to insist that doctors did not start him (at 94 yrs old) on dialysis. He had dementia but after a fall was admitted to hospital and got COVID. I suspect he caught it from the consultant doctor.

His Respect Form stated to hat he did not want any new conditions investigated. It was good to know that I was representing his wishes. I also need to get myself a form together.

They aren't refusing to accept it, it's because they can't and it's part of the condition.

I totally understand. It's hard enough seeing complete strangers going through this but when it's a parent or close loved one it really does something awful to you, doesn't it?

People say to me it will be a blessing once mum dies but I'm afraid the damage has already been done, I can't see that I'll ever recover from this, mentally or physically (my digestive system is in tatters from the constant stress).

Are you on Facebook? There are some great dementia support groups on there.

Failing that, feel free to message me if you ever want to.

It’s solvable though. I’m in my 30s and would happily submit to and pay for an annual assessment of my capacity and to sign ever year to say I consent to assisted dying in X, Y, Z were true and I no longer had capacity. Because it is absolutely no way to live.

But my family has always been very clear with each other that we do not take that on as a burden for one another. We should be put in a home and no one should feel the need to visit of they are no longer recognised. I would hate to have dementia, but I would hate even more if it ruined and dominated my loved ones’ lives too.

What I'm about to say might seem horrific but I know in hindsight my mum would have agreed with me .
My mum was 80 , still did did her own shopping , cooking , housework ( 3 bed house ) light gardening , fully independent .
Then she got cancer . From diagnosis to death was around 3 months .
Yes it was horrible , yes she ended up bedridden but it wasn't for years and she kept her dignity til almost the end .
I believe given the choice , most people would choose that over something long and drawn out .

After two completely disastrous hospital stays over the last year we now have a ReSPECT form in place to ensure mum never goes into hospital unless she has a break of any kind and even then we will try and get her to minor injuries. Our lovely GP has also organised for anticipatory meds at home.

She has no more flu or COVID jabs and no antibiotics either.

I'm trying hard to live my life and not worry but the stress has caused me so many mental and physical issues that I'm finding life utterly miserable right now and just cling on to hope that may change for me one day.

I agree and many will understand what you mean.

I know a woman in our village she cared for her husband, who had dementia for years. He has since died but when alive she used to say she wish he had cancer. I used to think that was so cruel but now I totally understand. Mum was diagnosed with breast cancer two years ago and I secretly thought to myself, thank goodness, she will soon be out of her misery but it's been kept under control with medication and she just lives with the cancer.

I honestly think mum is in for the long haul with her dementia.

I was going through a really difficult time me my life with my DM, one of my adult DC and then my DDad died. I had six sessions of counselling and it was so good for me, I now have lots of tools to use when I start to feel really overwhelmed.
Is this something you would consider?