dementia is just the worst

So many sad tales, and, like Whiff, I have told all my family that I want to go into a care home, even if at the time I beg them not to put me there.
Hearing your stories makes me thankful that the cancer took the Bodach before the dementia got really bad. Mind you, the dementia meant he didn’t realise anything about the cancer. He had become very aggressive, usually to me, and taken to using very inventive bad language. I have nothing but admiration for those who cope with stricken loved ones for years, as I’m not sure I could have.

My mum was just starting her dementia but had terrible audible hallucinations where she 'heard' my dad talking to other women, everytime he left the room he was on the phone speaking even when the house phone and his mobile were right next to her, it was so sad

LRavenscroft

I recall watching a TV programme once about a gentleman with dementia who became really quite crude with his female carers. It did embarrass his family to the extent that they got a live in male carer so that the behaviour stopped.

IMO it’s quite common. I heard of a man who became very inappropriate with his own daughter - his newer memories had been wiped out (which is what happens with dementia) so he thought his daughter was his wife.

In one of his Clayhanger series novels, Arnold Bennett describes a case of dementia, or ‘softening of the brain’ as it was called 100 years ago. IMO he must have witnessed a case himself. In the novel, young Clayhanger’s father (among other symptoms, such a forgetting how to use a knife and fork) ) started behaving inappropriately with a female servant, who was very disturbed by it.

Having lost my very ladylike, mild mannered lovely Mum, bit by bit mentally (it's a few years since she has known who I am) , and now watching her being hoisted from chair to bed as the shell of what remains of her lingers on is heartbreaking .
There have been times she has been hospitalised, end of life looming, and she somehow recovers at the last moment.
There has been the violent period, the inappropriate behaviour, and to me the worst of all the fear in her eyes. She screamed in the bathroom thinking some old woman was watching her through the window when in fact it was her reflection in a mirror. Personal interventions (double incontinence) she has always hated and fought against. Always was a private person. I would hate it too.
This for Mum has been ongoing since 2009 and no doubt for some time to come.
I have, as others have said a plan should I be diagnosed with dementia /alzheimers.

I know many will disagree, but for me personally if I get dementia I would like to be sedated and then finished off with medication.

I don’t want my family having to visit someone who doesn’t know them and us raving or rambling. I want the choice to leave this world in a reasonable way.

I doubt I will get this opportunity in my lifetime.

NanKate, having gone through it with my own mum and now going through it again with my MiL, I heartily agree with you. There's no way I would want to put my family through it if it were to happen to me. It is absolutely soul-destroying. I agree - let me go while I still have some shred of dignity left. We would not allow our precious pets to linger on when they have no quality of life left.

I lost my Dad almost ten years ago and he had dementia. I recall taking him to the actual assessment some years previously and was really alarmed at his lewd answers to some very ordinary routine questions set by the Dementia clinic nurse. She was very understanding and could see that I was quite upset at the changes in my Dad.

As his dementia progressed Dad became even more vocal and aggressive, both verbally and physically.

Sending my warm wishes and support to all those supporting someone with dementia - stay strong, all of you.

It is a disgusting, vile disease

Aveline
My mother in law was found in bed with another ( male) resident in her care home 😱

Oh dear ‘annsixty’ please don’t let your thoughts/actions in the past haunt you - you don’t deserve that truly…
Ps my DM has Alzheimer's Disease - it is a bitch 💔

I am grateful that although I have many physical problems my mind is still active.

It is just the vilest and most degrading of diseases.

And I will not let it happen to me. And neither will DH let it happen to him.

My Mum passed away during the pandemic at Christmas 2020. As if the dementia wasn’t bad enough we had limited visiting for months or garden visits and a Facetime call which resulted in poor Mum and myself both in floods of tears. She looked totally bewildered and I told the staff no more. Bear in mind that under normal circumstances I visited her every other day, took her out for a drive, for a push in the wheelchair etc.

The first thing I noticed about her dementia journey was her handwriting deteriorated and she had beautiful handwriting. Then she lost confidence in handling money in shops, making phonecalls and using her oven or microwave. Then she confused night and day. It was just awful watching her deteriorate.

She was never nasty or aggressive and always dressed beautifully but she did develop an obsession with going “for a wee”. She would literally come out of the loo, sit on her chair and say “I must just go to the toilet.” Nothing would convince her she had just been. I usually visited for at least 2 hours but she would be in the loo for most of that! She would make herself sore from wiping herself and in and out all the time and pulling her clothes on/off left her exhausted. She also had obsessions with collecting paper tissues, paper napkins and elastic bands. Her handbag would be bursting with them.

She loved listening to her favourite music, wasn’t interested at all in TV and enjoyed telling me all about her childhood, family and schooling which i then typed up and read back to her. When she was on end of life care the staff told me that was worth it’s weight in gold as when she was agitated or anxious they would read it to her and she would settle down and laugh and smile.

I recommend a book called The Little Girl in The Radiator by Martin Slevin. His Mum was Irish, like mine and her decline was so similar. It is an honest, moving and funny book because we found that even on the very worst days, Mum and I could have a laugh together.

My sister in laws aunt had dementia. She became very racist. It was difficult for SIL taking auntie for medical appointments when she would shout abuse at people of colour.

I think the trouble with dementia is , people live too long with it. As time goes on and they get worse, both their life and the life of their carers becomes so miserable. And sadly it never gets better.
My Dh has had dementia for 6 years now, and I often wonder what we’ve done to deserve this awful life.

Just no words to say how awful dementia and alzheimers disease is to watch and manage.

My late DH had dementia. He began to believe all sorts of unpleasant and untrue things about me, which led to him leaving home. To cut a long story short, he was found by the police and taken to hospital because they found him quite aggressive. He refused to come home when I went to collect him, and continued to behave in a threatening manner whenever I visited him. He went into a nursing home, where he was well looked after. I visited most days, though sometimes he refused to speak to me. I always knew, of course, that it wasn’t the ‘ real him ‘ talking, but that didn’t save me from abuse. It was a very difficult and sad few years, the memories of which will never go away. We just have to keep thinking of all the good years.

I was on a craft day a couple of years ago and met a lady whose husband had dementia. He was physically as fit as a fiddle and walked miles every day but never wore himself out.

His dementia was dreadful though. She said her life was hell as he wouldn’t allow any visitors into their house, ripped the phone out of her hands and he used to hurl abuse at her.

When neighbours told her they had seen him walking miles away and on very busy roads, her adult kids told her not to let him out alone so she tried locking the doors and he went crazy.

After years of physical and mental abuse she told me that she now sometimes thought the best thing would be if he was killed on the roads because neither of them had a life but she said it would be dreadful for the driver. Very sad.

Thank you Blondiescot you and many others have suffered so much. 💐

I work in a high dementia care home and it is very,very sad sometimes.
I too have a plan should I be diagnosed and have the time to sort myself out.. (because some forms of dementia you a normal, one Day, and right into dementia, the next, no time to sort anything out)
why I can’t go to my doctor now with my solicitor and make my wishes known that if I have dementia and get to the point where I don’t know my own name, I should be given a lethal injection and die with some dignity.. it is absolutely beyond me, why you can’t do this sort of thing and save years of suffering for the dementia, sufferers and the family..

ktsmum, I felt the same. I often wished my mother would slip away peacefully in her sleep before (since the time was coming) we would need to find a care home for her. It would IMO have been a lot more merciful than what happened, i.e. she went on for another 8 years, to 97, for her last 3 or 4 at least with advanced dementia, doubly incontinent, no clue about anything, not knowing any of her family.

At least there was no ‘striving to keep alive’ - I would have fought any such efforts - she was just as tough as they come.

Shinamae

I work in a high dementia care home and it is very,very sad sometimes.
I too have a plan should I be diagnosed and have the time to sort myself out.. (because some forms of dementia you a normal, one Day, and right into dementia, the next, no time to sort anything out)
why I can’t go to my doctor now with my solicitor and make my wishes known that if I have dementia and get to the point where I don’t know my own name, I should be given a lethal injection and die with some dignity.. it is absolutely beyond me, why you can’t do this sort of thing and save years of suffering for the dementia, sufferers and the family..

Dementia or Alzheimers can advance slow or fast. So sadly, a decision, even where it is allowed, has to be done too early, or it is too late.

Alex Pandolfo has done many interviews about his decision to travel to Switzerland as and when his diagnosed Alzheimers gets worse- but it is like Russian Roulette. He knows that if he waits too long, he won't be able to travel independently or be allowed an assisted death, if not totally compos mentis.

www.facebook.com/groups/278597605805885/permalink/1684530301879268/

he has done interviews on Good Morning and a very moving one with Nick Ferrari- who on this occasion, showed a really compassionate side.

Reading this makes me so grateful that none of my family have suffered in this way. My mother had started to get very forgetful and confused before she died but was living in sheltered accommodation with a warden so was not at risk. The only member of my DiL's family that I haven't met is her paternal grandmother who has dementia, the only family member not at their wedding. I don't get the impression she is violent or inappropriate, just doesn't really know her family any more.

My experience of dementia is very limited and I hope that this continues to be the case. Hugs and flowers to those of you dealing with such sad situations.

It is so difficult watching a loved one being taken over by dementia. My dad was himself to the end but my mum just got very forgetful..Eventually she didn't know or understand most things or recognise people. She did reach 100 and we have lovely memories of her birthday party. When she saw the photos she asked whose birthday it had been. She didn't recognise herself. It was very difficult but thankfully she didn't seem to be very aware by that time. It broke my heart when I saw her one day. Gave her a hug and then she asked who I was.

Here is the interview between Alex and Nick Ferrari. Never been a fan of Ferrari, but as said above, on this occasion he was great

youtu.be/0S1yn-7SFGc