Alzheimer’s is a dreadful disease

[AtlasPine]

My mum. Nothing else really. I’m too tired.

It is.
Mine died in 2020 physically, but we lost her completely about 3 years earlier.

It really is. I'm so sorry. Have a rant if you need to.

It’s horrible.
I watched Alzheimer’s take the personalities of both my dad and step mum before it took them completely. The fear and confusion is heartbreaking.

I hear you. My dad died last year, but we lost him to dementia years ago.
So tough.
Sending hugs.

My mum got her formal diagnosis this week although she is well into to the second stage now (father has been in denial for some time and not been amenable to suggestions she saw a doctor about it).

It's fucking brutal. And so unfair.

It's a horrible disease, terrible for the relatives who have to watch the slow decline. There should be a point at which doctors can put people to sleep, you would not keep an animal alive in the state one of my relatives lived for over a year.

Life at all costs is total bollocks. I intend to sort myself out if I get an inkling that dementia will be my fate.

Yes it is a living nightmare. I wish that medical teams were honest about it. The handing over of a diagnosis with a cheery wave and a tatty leaflet about living well with dementia is risible and pathetic.

I am so sorry for all having to deal with this

Dementia is cruel but the doctors still hasn't got around to working out that a patient needs quality of life not quantity. I'm so sorry your DM has this wretched disease, so sorry. My only advice is to take every bit of help that you can get, Age Concern were very helpful when my DM had dementia.

Thanks for the messages of support. Pre-dementia mum would have been so horrified at how this has left her. As someone said - the fear and confusion is hideous. We should be allowed to discuss a personal voluntary shut down end date -eg when we don’t know our loved ones or where we are when we are cognitively able so we don’t have to go through this.

I watched my mother go through it and I agree I would rather die.

You're not wrong OP. I watched my mum fade away over 7 years with vascular dementia. When she had capacity she requested DNAR on her medical records and her last months were spent in a care home. Her heart gave up last year and she passed away peacefully in her sleep 💔

My Mum would be horrified that her house is being sold to pay her £2k a week nursing home fees…

I am so sorry. It is a cruel, drawn-out disintegration. My poor mother was gone long before her physical death. I would take matters into my own hands if I had any warning I was going the same way.

Take every scrap of help you can get. Try to look after yourself too.

It's the worst. [Hugs]

You are so right @AtlasPine , I had cancer for part of the time my DM had Dementia and I would rather have the cancer again than end up like my DM. People don't believe you when you say it but that's because they aven't seen dementia up close, I fear death but I fear the loss of myself so much more.

I've had to put my Mum in a care home as she no longer has capacity and can't be in her own home. She keeps calling to beg me to pick her up and saying how depressed she is or the call is her raging at me for doing this to her and telling me she's never going to speak to me again. It's sooooo hard. I miss my Mum yet she is still physically here. Evil disease

I'm so sorry. I completely understand.

I loved my dad so much, but honestly I was relieved when he died and felt a weight had been lifted, because it was so unbearable to see his utter fear and worry and sadness. It was torture.

I'd have taken him to dignitas if I could.

I hate it I hate it I hate it. My lovely mum has gone but I can’t grieve her because she’s not dead. She doesn’t even know it’s happening to her any longer.
If I ever get an Alzheimer’s diagnosis I’m just going to go for a swim in the sea and not come back. I could never put my kids through this

I know someone with a dementia diagnosis who has just been on a skiing holiday. She is just forgetful and has the same conversation over and over but is still enjoying life.

My mother was not so fortunate, she always denied there was anything wrong with her and ended up violent and doubly incontinent.

I’m with you - my dad had it - bloody awful.

Yes, awful. My mum was just beginning to slide into it when covid got her and though I miss her, I am so glad she was spared the suffering and degradation that she was always frightened of experiencing.

Another here watching my strong capable mother disappear in front of my eyes. Her body will keep on keeping on, but her memory is gone, she lives only in the moment. It's been three years so far and I can see it lasting much, much longer. She's had enough, but her body won't release her from the prison of no memory. The long goodbye.

Absolutely, mine too.

She finally died in 2019 but really I lost her 5 years before.

Such a cruel disease

I know people thought I was cold and heartless because when mum finally died I didn't shed a tear. But I was genuinely pleased for her that it was over and she was at peace at last. My mum died a long time before her heart finally stopped

I think when people are talking about the quality v quantity of life debate it is worth taking a little readjustment about what can be quality in life. Your parent may not recognise you - but that doesn't mean that they aren't happy to see the person who visits them every week and chats to them . They may not be able to do crossword puzzles or play the piano any more (or whatever their previous hobbies were) but they can possibly still enjoy listening to music, watching other people doing activities or just enjoying a hot chocolate and cake.

I do understand that there is a time when the line is crossed - but I think it can be a lot later than many people think.