dementia is just the worst

Yes, Blondiescot, my mother’s dementia-only care home always warned relatives new to visiting, never to assume that anyone was a visitor, not a resident, and inadvertently let them out. One or two would so often be lurking near the door, ready to slip out with any visitor who was being ‘buzzed’ out.

OTOH, when I was once visiting my mother, admittedly looking somewhat scruffy, since I’d been in the middle of DIY at home, I warned an evidently new visiting relative not to leave her handbag lying about (as she just had) because it’d ‘walk’. (The care home could resemble Kleptomania Central!).

But she looked so askance at me, I knew she’d taken me for a resident! Luckily one of the staff had overheard and (seeing the funny side!) hastened to repeat my warning.

When my mum was first admitted to her care home, we would see a lovely lady who was always dressed very elegantly, and thought she must be visiting someone. One day she appeared with her coat on, handbag etc and a member of staff asked her where she was going. It was only when she replied: "I need to go home, my mother will be expecting me for my dinner," that we realised she was a resident. Good job we did, as she would often be seen walking up and down the corridors and it would have been easy to hold the door open for her and let her out by mistake.

What a great idea Witzend. Two of the men on the ward I attend are always 'on the way to town' and looking for a bus.

Aveline

A care home near us has a special wing for people with dementia. There's a very nice special walking area that just circles back so the walkers can have a walk but are quite safe. Sadly, so many of them seem to be looking for someone or some familiar thing but of course can never find them and keep looking.

I heard of one care home that installed a ‘bus stop’ with a bench somewhere in the garden - apparently it was a great success with residents who liked to think they were waiting for a bus to take them wherever.
My mother at over 90 went through a lengthy stage of wanting to visit her parents ‘because they must be getting old and could do with some help’.

So,of course I was forever promising to take her ‘tomorrow’ - we couldn’t go today because (suitable excuse). Her short term memory was by then virtually zero, so she never remembered that I’d said much the same before.

A care home near us has a special wing for people with dementia. There's a very nice special walking area that just circles back so the walkers can have a walk but are quite safe. Sadly, so many of them seem to be looking for someone or some familiar thing but of course can never find them and keep looking.

Primrose53

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.

My FiL was similar, Primrose53. He was still very physically fit and active, and was like a caged wild animal if not allowed out. When he lived with us (not for more than about a year, I couldn’t cope) he would take himself off and I would be beside myself with worry, since we lived not far from a busy road and he was no longer at all careful about crossing roads. Also, he would fly into absolutely terrifying rages about the tiniest thing - over which I usually had no control. I had to tiptoe on eggshells around him - and yet pre dementia we’d always got on very well and I was fond of him.

Finding a care home that wouldn’t lock him in was a major operation - I will always be so grateful to the one that finally took him - they were brilliant with him.

Fleurpepper

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

Thank you for that, it made me cry.
A few years ago, I watched the Terry Pratchett documentary when he accompanied somebody to Switzerland, and that was very touching as well.
The awful thing is that people have to end their lives before they should really because they cannot risk being demented, I certainly can’t

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

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.

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.

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.

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.

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.

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..

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

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.

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.

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

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.

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.

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.

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.

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

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 💔

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