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dementia is just the worst

(57 Posts)
anonymose Sat 01-Apr-23 04:03:06

We've just had the most delightful few days with my husband's sister visiting - a few years since we saw her & I was really looking forward to it.
But the mild confusion we remembered her with has worsened & although she was very cheerful & wanting to help do stuff (everything actually smile ) I was a bit sad to realise that a lot of her conversation topics revolve arond men (previous boyfriends & current friends) & what she wants them to do to her. Not at all like she was - which was a bit straight laced & proper. But still doing fun & silly things with her late husband).
Doesnt life take unusual & sad turns sometimes. We chatted lots, had lovely talks about the old days when our children were all young etc, but often when it was just me & her she would talk about how often all these other men are contacting her. I dont know if she was speaking a reality but I really didnt know what to say, I found it quite awkward.
Have other Grans coped with such a personality change in someone they have loved as dementia takes over more. I definitely dont want to distress or embarass her older children & my DH, her brother got quite embarrassed too.
Darn. smile
PS - her family arranged travel for her to come & stay so this was all with their support & arrangement, she cannot manage public transport alone or drive safely any longer.

Shelflife Sat 01-Apr-23 09:23:49

Dementia is indeed a cruel disease. It often takes away inhibition. Not much you can do about that other than try and explain to other family members why she behaves as she does and speaks out character. Don't feel awkward or embarrassed just try and accept, it is what it is - easier said than done , I know that. I wish you all well.

Georgesgran Sat 01-Apr-23 09:54:53

Incredibly cruel. This happened to my friend who became very amorous towards complete strangers. I won’t go into any detail, but it was so undignified and out of character. Thankfully it was a phase that quickly passed as she descended into that awful illness.

nanna8 Sat 01-Apr-23 11:40:53

It is a horrible, horrible illness robbing people of their dignity. I saw it with a friend of mine who is now in a care home. She went from being an independent free thinking clever woman to being an inane airhead saying some very inappropriate things indeed. I hate the disease.

LRavenscroft Sat 01-Apr-23 15:10:46

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.

Blondiescot Sat 01-Apr-23 15:48:34

It is indeed a horrible, cruel illness. I watched my mother slowly deteriorate over a period of years, and now we are going through it all again with my MiL. And it affects different people in different ways - some are very passive with it, others can become very argumentative or even violent. You really do lose the person twice - firstly as the disease robs them of everything which made them 'them', and then finally when they pass away.

Luckygirl3 Sat 01-Apr-23 15:56:46

My late OH's conversation and behaviour became inappropriate and T times quite scary.

The only blessing was that there was sufficient control to not do or say these things to our DDs - as far as I know - but they would have spared me that information I am sure.

He also became very paranoid and threatened me, as he thought I was trying to poison him.

It was all hell.

Luckygirl3 Sat 01-Apr-23 15:57:17

at times ...

anonymose Sat 01-Apr-23 21:53:20

thanks for all your kind words.
My DH is very much like his (late) dear Mum & she was very private & shy - so these "chats" with his big Sis quite overwhelmed him.
But I will reassure him that its the disease & not her & to try & remember the other parts of her visit. thanks

HeavenLeigh Sat 01-Apr-23 22:13:28

My dad had dementia luckily that didn’t happen to him but I totally agree it’s such a cruel disease , but his friend who was couple of years younger than him also had a different type of dementia and he was fixated to the point of obsession with the young woman who lived opposite, he would go off to visit her and make all sorts of crude comments to her, his wife was mortified and just didn’t know what to do about it and was forever apologising to her neighbour, she said she was relieved when he went into a nursing home as found it so hard to deal with his situation it was heartbreaking

MerylStreep Sat 01-Apr-23 22:31:40

My dear late mother in law became very inappropriate with this vile disease.
My brother in-law became very violent.
My daughter has a neighbour who became fixated with her. The police became involved.
My close friends mother is the sweetest thing you could wish to meet.
If you’ve met someone with Alzheimer’s, you’ve met one person with Alzheimer’s.

annsixty Sat 01-Apr-23 22:56:12

I lived with dementia in my H for several years.
He never became *inappropriate” in the way sited here but he was very difficult when shopping with me.
He would say what he thought was funny to customers and staff causing me endless embarrassment.
Until you have lived with a dementia sufferer you can have no idea what it is like day after day, week after week, there is no relief from it.
It takes away the person you know and love until you are living with a stranger.
One of the worst thing I remember saying to someone was that if I had met my husband at the time of our conversation I would never have married him .
That haunts me to this day.
The most dreadful disease.

Whiff Sun 02-Apr-23 06:18:39

Dementia and Alzheimer's is a living grief. The person you love has died but their body lives on. I have experience of looking after my mom for the last 18 months of her life I had her live with me. I was her sole carer . When the violence started I wouldn't put her into a home she was my mom. She had already forgotten who I was and thought I was her mom before she started to be violence. But the violence is NOT abuse as someone called it on another thread it's thought FEAR . My mom didn't know who she was ,who I was or where she was. Yes it was frightening and shocking the first time she bit me but it wasn't my mom . I used to hope every morning my mom had died in her sleep not because I hated her but because I loved her so much.

My mom used to say when she first began to forget couple of years before she lived with me don't let me go dally tap (mad) . I had to explain what was happening to her but promised I would look after her and not put her in a home. I am proud of the fact my mom didn't have a sore on her body when she died aged 90. I knew to many who had put family members in a home who had awful bed sores.

And before anyone thinks I must have been fit and healthy to look after my mom I am not nor have been since I was born. Mom died in 2017 . My husband had died in 2004 , helped look after my dad who died in 2007 and my mother in law died in 2015.

All the people I have know who have a loved one with dementia or Alzheimer's the person they love has turned violent. But please remember the violence isn't them and it's because of FEAR. Not a scientific fact but through my own experience. Others will disagree but we all have our own take on dementia and Alzheimer's if you look after your loved one 24/7.

If my mom had known she would end up attacking me multiple times a day for 4 months she would have thrown herself down the stairs in an attempt to end her life. She had threatened to do that when she first lived with me when she had an UTI and I said I wouldn't pick her up. She said I won't bother then.

I will always cherish the memory of my mom the Wednesday before she died. She asked if we could have a cuddle and said I want to sing to you mom all the songs dad taught me. And we cuddled and she sang for a hour. It was lovely. Unfortunately after a sleep she attacked me. It took me a year after my mom died not to remember her without the violence. But now I only think of mom when she was my mom and only mention the violence on GN or if someone asks me my experience of dementia.

Dementia and Alzheimer's is an awful disease and destroys the person you love. They don't suffer as they don't realise what they are doing or saying it's the people who look after them who suffer . And it can take years for the person's body to die long after their mind has. It not only destroys them but something in you to. I still bear the scars from my mom's attacks but it wasn't my mom who did that it was the disease.

I would never let my daughter look after me if I see the first signs of dementia in me . I would never want her to go through what I did. I have already made my plan of action .

Only someone who has looked after their loved one with dementia or Alzheimer's 24/7 will understand.

NanaDana Sun 02-Apr-23 07:06:52

It's so very hard to keep reminding yourself that the person you knew and loved has actually departed, and what is left behind varies between being a different, often challenging stranger, and at the other extreme, someone who is totally shut down and virtually incapable of any form of meaningful communication. I believe that we experience the most painful type of extended mourning as we witness those final years of a loved one who is in the grip of this foul illness, and is gradually slipping away. When the end comes, although obviously there is sadness, certainly in my case there was also a sense of relief. In the final stages, I experienced feelings of both guilt and anger at the situation, and a sense of sheer frustration at my increasing inability to connect with the person who used to be my much-loved Mother. I managed to share those feelings with my Sister, and it helped to hear that she was feeling exactly the same. Now that Mum has gone, even after 5 years I am still working hard at replacing those final, challenging memories with recollections of happier days, when she was still herself. I pray to God that I'm spared this terrible disease myself, as the thought of inflicting that on my own family terrifies me.

silverlining48 Sun 02-Apr-23 08:41:15

My mum died 10 years ago after having dementia for 10 years which means 20 years of grief.
It’s the cruellest of diseases which strips the person of all dignity with little or no quality of life and the strain on the family for all that time seems endless.
When death eventually comes there is sorrow but a sense of relief too and even after all this time my memories of my mum
are those painful years when she and we all suffered .

Redhead56 Sun 02-Apr-23 08:48:56

My mum had dementia it is such a cruel illness it totally removed her lovely personality until she was unrecognisable. It was heart breaking to watch at the time and I admit it was a relief when she finally died. She was finally at peace and it was the end of constant tears shed by her and the family. I feel for anyone in the situation watching their loved ones slowly slip into the ravages of the illness.
I take comfort now helping raising funds for the a local dementia club through friends who are very involved. Knitting scarves and cuddle blankets to provide comfort to dementia patients. Small things that bring a bit of light to the lives of victims of such a grim illness.

MerylStreep Sun 02-Apr-23 08:58:29

Oh, Whiff that is unbearable sad. 😢

Blondiescot Sun 02-Apr-23 09:10:04

Whiff, I completely understand what you mean. Having been through it with my own mum and now with my MiL, there is no way I would put my family through the same. We are/were lucky in that both my mother and now my MiL were very passive with the dementia, not in the least bit violent or aggressive. It affects each individual differently - but is nonetheless distressing for the families.

PerkyPiggy Sun 02-Apr-23 09:20:21

I was raised by my maternal grandparents. My grandmother was my mum! She became violent and aggressive towards my poor grandfather (Dad) - once trying to stab him with a kitchen knife. Before dementia she was the most kind and loving person. She really didn't have a bad bone in her body. Dementia came and took her away. It was horrid. I feel so sorry for you and your family. X

Aveline Sun 02-Apr-23 10:07:11

On the ward where I volunteer there are many people with dementia. No two are the same. Some are very sweet and have disappeared back into childhood and have lots of dolls and toys, there are absolutely silent gentlemen who walk around and often into others' rooms. Sometimes they try to get into bed with people to general alarm. Others seem quite compus mentis at times then quite suddenly veer into a different realm. Other sad people cry for their mothers.
Such varied presentations. Good people just lost to this awful affliction.

Ktsmum Mon 03-Apr-23 11:43:03

What I have found in my career as a dementia nurse is that different types of dementia exhibit different symptoms, and that disinhibition is not always present thank goodness, indeed it is often upsetting to other dementia sufferers living alongside them. It is a wicked horrible disease, and having witnessed my own mum's slow decline, I often wished she would pass peacefully in her sleep, I consider it is not wrong to think this but is actually loving and compassionate to wish someone's suffering will end.

Yammy Mon 03-Apr-23 12:23:10

We knew someone whose family never alerted anyone to their mother's condition. She took to going to funerals and if the partner left was male she would make very inappropriate suggestions using extremely crude terms whilst trying to sit on their knee.
We were lucky the one in our family thought they were on holiday in a hotel and always asked if Christmas had been booked. The sad thing was they kept part of their intelligence and if you asked general knowledge questions they could answer but did not remember who had visited the day before.
I have just lost a friend to Early onset they got it in their 50s and the family has had to cope for 20+ years.
It is such a cruel disease.

NemosMum Mon 03-Apr-23 13:24:00

Dementia takes many forms, and the disinhibition described by the OP would be typical of front-temporal dementia where the person loses 'executive function'. This is particularly distressing to families. It's worth trying to remember it's the disease talking, not the person. I've had 25 years of practice with this - husband, then father. Not easy, but you do learn coping mechanisms.

Twopence Mon 03-Apr-23 13:27:48

My DH and I are living with his dementia and it is so sad to see him suffering. He gets very confused and anxious, but thankfully doesn't exhibit any of the uninhibited behaviour cited in the OP. It is such an awful disease and so difficult for victim and carer to deal with.

Lin663 Mon 03-Apr-23 13:44:38

My parents both have dementia and neither have become coarse or vulgar. But I remember my Mum’s older sister was a bit of a potty mouth when she was suffering from dementia, and would regularly attempt to take off her clothes in inappropriate places.