Alzheimer’s is a dreadful disease

[AtlasPine]

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

And I am speaking as someone whose parents both suffered from dementia (both sadly passed now)

My mum died physically in 2020, but she'd died years before. She was terribly distressed by it, could be violent, and couldn't communicate her needs or understand what people were saying due to her language loss. Awful.

OP, I am so sorry.

My Mum was so frightened when she was diagnosed, but to the end she knew who we were, and was having little flashes of herself until she slipped into the unconsciousness that led to her last day.

The whole thing is incredibly cruel. Robs a person of themself.

And such hard work for family.

Same here with my Dad. After his death my supposed best friend at the time kept telling me I wasn’t grieving for him properly. I was grieving for him when he was still alive and suffering from this awful condition. When he died I was relieved he was no longer suffering.

My Mum has recently been diagnosed with dementia and it’s horrible. Heart goes out to anyone who watches their loved one go through this.

I had my doubly incontinent cat with dementia put to sleep

I cant do the same basic decent thing for my mother.

The medical profession minimising and gaslighting about the reality of dementia to poor broken families doesn’t help.

The sufferers take years too long to
die - years of terrifying suffering.

Terrifying to us and them. It’s mental pain in the extreme, far too often.

HCP who’ve seen dementia up close are far more likely to support assisted suicide - carers, nursing home staff, etc..

🤮

@ShinyAppleDreamingOfTheSea I know that you mean to be comforting but sadly people with dementia can be very up and down, it's not a slow, gradual fade. My DM saw people in the house who didn't exist but who upset her deeply, she couldn't abide a part open door because she saw people staring at her through the gap. Sadly her distress had no part in reality

My DM had vascular dementia, when she died (peacefully in her sleep) my first thought was ‘Thank god!’

MIL had Alzheimer’s. DH is an only child so her care has been down to us, and for the last two years it has been like trying to look after a demon who hates and distrusts us.

She died just after Christmas, which is what she wanted. It will take us quite a time time to get over it. It’s the emotional equivalent of being smashed up in a car crash.

Heartbreaking. My aunt had it, we were very lucky that she still knew us, she was happy, thought she was in a hotel. The home was small, cosy, staff lovely. She passed away during the night, very peacefully after six months.

”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 .” I would rather die than be unable to recognise my daughter, or to put her through that loss, I would want her to remember me the way I was. We should be able to choose how much we are willing to suffer/lose.

I’m scared of how I’ll die, but not death in itself. I would like to die still recognising my family and leaving them peacefully, quickly and with dignity.

It's vile. I am now carer for my ex dp, who has young onset Alzheimers. The last years of our relationship were horrific, and I'll never know if that was at least partly because dementia was already developing. Nobody thinks it could be Alzheimers when you're in your early fifties.

I don't believe my mum is suffering. But she is no longer the person I knew. She is not suffering, because she is drugged to the eyeballs; before that, she definitely was and it was diabolically awful.

My mother in law is probably not suffering either. But neither of them are the women I knew. Both, I know, would be horrified that they are still alive, if they were capable of holding on to that train of thought. Both can still communicate with facial expression a little.

In terms of quality vs quantity; we have achieved the best quality of life we can for both of them, in shit circumstances. But at least in my Mum's case, there will be no more antibiotics, no more hospitals, no oxygen, nothing to stop the inevitable next infection taking its course and symptoms being treated with morphine if necessary. There is no difference for her between an hour in this state and a year. Length of time is meaningless.

It's living hell - for the sufferer, or for their loved ones, or for all - I can't think of anything worse and that's having had experience of dreadful cancer and other diagnoses in the family. There are no answers and is no hope really, as negative and bleak as that sounds. My DM has Alzheimer's diagnosed last March but she's not been herself for 7-8 years now. The poster before who said it robs personalities is right, and with that it destroys relationships. I tolerate my DM now and do what I can for her for my love of the memory of her and to support my DF, but every moment of it is painful. The support available falls so horrendously short.

Sending love to all those affected: past, present and future.

I can’t remember my mum before Alzheimer’s. It’s been 4 years, she is fighting the illness, by being in denial, being anxious and paranoid about all efforts to get her much needed and minimal care. She has brothers, one help’s but has very clear boundaries, the other has fucked off and barely acknowledges my existence. Mum has decided my DH and DS are out to get her so I can’t have support from them. I just need to know how long this will last, I am convinced she will probably out live me.

Sorry to hear that OP. I tend to stay away from threads about dementia and Alzheimers because I can't bear to re-live that period, it hurts too much.

My mum died in May 2020 and I hope she enjoyed the blissful release. I don't think I've grieved properly because she wasn't the mum I knew when she went.

op I am sorry to hear about your mother. Dementia is a cruel and terrible condition and I agree about the medical profession minimising it. My siblings and I found it so sad to see our capable and intelligent mother deprived of everything.
Neither did she appear calm and happy - she used to cry a lot.

Life at all costs is total bollocks. I intend to sort myself out if I get an inkling that dementia will be my fate.
I entirely* agree but I have no idea where to get hold of drugs or poison that I *could use.

I know exactly what you mean. Df died from dementia 10 years ago, having been ill for 10 years and in a care home for 7 of those. He starved to death in the end once he had stopped eating. Horrendous to watch him suffer. Now dm has it and has just had to move into a home. She's actually fairly content at the moment, physically well and recognises me, but I can't bear to think of what the future holds.

The problem with dignitas, is that you need to have mental capacity to go ahead. And if you have dementia, you'd have to do it while you were still well enough which is probably when life is still OK. By the time life is shit you won't be deemed to have capacity. A particularly shitty catch 22. Dread the same thing happening to me.

It is indeed, my wonderful dad was overtaken by this cruel disease. Sounds really horrible but he died following a stroke and it was a sweet release for him I'm sure.

My dad was diagnosed 9 years ago. He doesn't know he has family. Sometimes we are familiar to him. Over half the time he has no clue who we are and has no desire to see us. Getting him to ours for Xmas dinner was heartbreaking because he couldn't understand why he was being sent out with strangers and he was v concerned that it wasn't safe. He managed an hour before he became distressed and wanted to go home.
Physically he is completely independent and he can still walk a long way ( it's half a mile from his to ours). I think we may have years yet to go. He's been asking to die for 5 yrs. I can't help him though.

A swim in the sea is my plan too.

My lovely DF has Alzheimers, and is so distressed and confused it's unbearable.

@Daleksatemyshed My DM saw people who weren't there too.
Funny, the things you do to make life bearable - my DD's & I christened the imaginary men Pete & Ivan..
SUCH a relief when she died in her sleep last year.

^^ this
dad died recently and although I’m so sad and miss him terribly, I’m glad he’s at peace. The agitation, worries, paranoia, fear, actual terror in hospital, was heartbreaking.

My lovely therapist, whom I go to to vent about dad when friends didn’t deserve any more moaning, suggested I keep the end of life morphine he’d been prescribed

I handed it back to chemist, but they were so disorganised, I don’t think anyone would have noticed

My mother has Alzheimers, she doesn't know who I am but is comfortable with me. She lives with me and at the moment she can still enjoy things. I have two dogs and a cat and she gets great comfort from them.
I am struggling to remember her before and I find that really upsetting. Thankfully she is fairly calm but would have hated that I attend to her personal care. It's so much more than just the memory loss. The loss of control over your body.
I hope so much she can stay with me but I do not know what lies ahead . Its a cruel, cruel disease .

My dad died two years ago, a different man to the one I grew up with, who didn’t know who I was. I struggle to remember him before his diagnosis now, all I can remember is a child like dependent towards the end, confused, frustrated, terribly grateful for every gesture of kindness.

As other posters I too have a cold dread of getting a diagnosis myself. My mum had 3 siblings, one died of cancer at 46 but the others all developed dementia or Alzheimers. As did their mother. With any luck I've got my dad's genes, no dementia in his family (I know there are other factors).

I was thinking of a POA to be activated once I've lost capacity, and clear documentation on the date I set up the POA showing my desire for a one way ticket to Dignitas.

A swim in the sea or a night time walk out to remote woods in freezing temperatures otherwise. I don't have children but I couldn't put my husband through the trauma of caring for me.