Alzheimers; a right bastard

sidsnot

War Hero
@sidsnot

Apologies if I’ve missed this in the thread, but a good idea is to make a book of memories.
Find photos of family, pets, houses or cars etc, print them off and stick them in a book explaining what they are. Write in the book in large clear print.

If there is a pic of two kids, Janet and John as an example, don’t write Janet and John under the pic, but put something like ‘My children, Janet born on xx xx xxxx and John born on Xx xx xxxx, Janet likes playing chess and John loved riding his bike, We used to go on holiday together to xxxxxxxx.

If there was a pic of a cat put something like ‘This is my cat fluffy’ I got him as a kitten and he lives with me at xxxxxwhatever addressxxx, he liked to sleep on the bed and I love him’.

You need to add as big a descriptor as possible, as the person with dementia may not know who or what the pics have to do with them, but pics can trigger long term memories.

If someone with dementia needs care from people outside the family then write a pen portrait for carers to read. A pen portrait can contain info such as siblings, spouse, pets, likes, dislikes, favourite music or food, plus a work/career history. The pen portrait helps the carer see the person as a real person who had a real life rather than just a shell of a person.
Thankyou
 

Grownup_Rafbrat

LE
Book Reviewer
Worth doing, as I sat in the room when my aunt swore blind to her social worker that she had no brothers or sisters. I had to let the social worker know that my father did exist!
 

Fang_Farrier

LE
Kit Reviewer
Book Reviewer
It’s a horrible thing to deal with.
Seeing parents essentially repeatedly ‘grieve or learn things for the first time’* is very hard to deal with, but seeing them brighten up and be able to clearly some long term memories is a bonus to treasure.

*towards the end of his life my father was in a nursing home.
I would visit him in his room and he would ask ‘is your mum downstairs’ as he thought he he was living at home, and in his bedroom.
I would often just say yes, but the times I had to point out where he was he was essentially learning that ‘fact’ for the first time, no matter how many times I had to tell him.
Grieving is the same issue, a person with dementia might ‘find out for the first time’ a sibling or partner had died every time they ask about them.

Get yourself a strategy for dealing with this in advance. I hated telling lies to my dad, but it saved him from agonising over the things he had forgotten. It was much easier him him when I told him ‘yes, mum is downstairs’.

Keep your chin up, it’s a crap situation, but live for the good times and memories :)


The concept is called therapeutic lying.
A good paper on it from last year is here
 

Slime

LE

Fang_Farrier

LE
Kit Reviewer
Book Reviewer
I’m aware of it, but in regards to my own father, I found it much harder emotionally than I ever did in a work setting with residents I was paid to support.

It is not something that you can prepare for when it is your own family, as you say, very emotional.

You're dealing with the fact that they have somehow lost their memory of an event whilst that same event is brought to the fore in yours
 

Slime

LE
It is not something that you can prepare for when it is your own family, as you say, very emotional.

You're dealing with the fact that they have somehow lost their memory of an event whilst that same event is brought to the fore in yours

Very true, but at a very basic level there is also the fact you are telling lies to someone who raised you not to tell lies, and who you had been truthful to for half a century or more. For over half a century there had been a deal with parents that it was wrong to lie to them, and many of us will only have lied to them if we had something to hide.

On the other side of the coin, when dealing with residents in a work setting they had a care plan that had to be followed, and a different set of rules or approach existed from day one when you first met them.

Going back to your above point, there is also the fact that if a resident asked about ‘a mum downstairs’ they are asking about ‘a mum’ and ‘a downstairs’ the staff member may have never seen, whereas with our own parents it’s our own mum and our own house in many cases.

I always felt guilty about finding it hard to lie to my father during the time he had dementia, and feel this was partly due to the fact that for some of that time I worked in a care environment, and in the care setting it was like water off a ducks back.

While working in care it was interesting to observe sets of siblings who all loved their relative but some found it much harder than others to deal with seeing a parent who was now a very different person mentally.
I saw people full of guilt with their inability to want to see the relative, and was very candid with them that I was the same with my own father.
 
It’s a horrible thing to deal with.
Seeing parents essentially repeatedly ‘grieve or learn things for the first time’* is very hard to deal with, but seeing them brighten up and be able to clearly some long term memories is a bonus to treasure.

*towards the end of his life my father was in a nursing home.
I would visit him in his room and he would ask ‘is your mum downstairs’ as he thought he he was living at home, and in his bedroom.
I would often just say yes, but the times I had to point out where he was he was essentially learning that ‘fact’ for the first time, no matter how many times I had to tell him.
Grieving is the same issue, a person with dementia might ‘find out for the first time’ a sibling or partner had died every time they ask about them.

Get yourself a strategy for dealing with this in advance. I hated telling lies to my dad, but it saved him from agonising over the things he had forgotten. It was much easier him him when I told him ‘yes, mum is downstairs’.

Keep your chin up, it’s a crap situation, but live for the good times and memories :)
Sometimes its best to go with the flow no detailed answers and yes Dad the moon is made of blue cheese. Better that than an argument or worse still leaving him with a problem that will takes hours or days for him to get over - or at best he will forget.
 
I’m finding with Dad that not correcting his statements, such as ‘you’ve stolen xxxx’ means we don’t end up arguing. It’s hard to do as that sort of thing is a big red rag to me and I have a natural desire to protect myself.

It also chimes with something @humble-tiller said earlier about walking into ready made arguments, I’ve been home this weekend and I know I’m going to walk into a shit storm of accusations when I go back tonight.
 

Slime

LE
I’m finding with Dad that not correcting his statements, such as ‘you’ve stolen xxxx’ means we don’t end up arguing. It’s hard to do as that sort of thing is a big red rag to me and I have a natural desire to protect myself.

It also chimes with something @humble-tiller said earlier about walking into ready made arguments, I’ve been home this weekend and I know I’m going to walk into a shit storm of accusations when I go back tonight.

That brought back some memories. :)
Being accused of stealing things, or taking money from bank accounts was a regular thing.

My siblings and I would have regular phone calls to discuss ‘who had been told what’ or who had been told another sibling had been given something that was now lost :)

On a serious note, between us we managed to stop several what I would call scammers who seemed to pray on elderly people who might have onset dementia etc.
We are talking distraction burglars or common thieves, but door to door sellers of fish, fresh meat etc, or large companies/charities selling hearing aids, or mobility aids at very high prices.
 
That brought back some memories. :)
Being accused of stealing things, or taking money from bank accounts was a regular thing.

My siblings and I would have regular phone calls to discuss ‘who had been told what’ or who had been told another sibling had been given something that was now lost :)

On a serious note, between us we managed to stop several what I would call scammers who seemed to pray on elderly people who might have onset dementia etc.
We are talking distraction burglars or common thieves, but door to door sellers of fish, fresh meat etc, or large companies/charities selling hearing aids, or mobility aids at very high prices.

I think it’s just the way he processes losing something, but instead of thinking ‘where have I put it?’, he thinks ‘someone has stolen it’.

Dad’s weakness has been catalogues and consequently the house is full of tacky shit that he would have never entertained in the past, the automatic calls that everyone with a land line is plagued by don’t have much effect as he’s as deaf as a post. I think they give up in frustration in the end.

The biggest problem so far is him continually telling the social care side of things that he never sees anyone and making out he’s totally neglected, he’ll even do it when I’m in the room, which is nice..
 

Fang_Farrier

LE
Kit Reviewer
Book Reviewer
There can be an element of paranoia with dementia.
Definitely accusations of theft are common.
I've seen more than 1 care home resident write their name on all their tissues in a box.
 
It’s a horrible thing to deal with.
Seeing parents essentially repeatedly ‘grieve or learn things for the first time’* is very hard to deal with, but seeing them brighten up and be able to clearly some long term memories is a bonus to treasure.

*towards the end of his life my father was in a nursing home.
I would visit him in his room and he would ask ‘is your mum downstairs’ as he thought he he was living at home, and in his bedroom.
I would often just say yes, but the times I had to point out where he was he was essentially learning that ‘fact’ for the first time, no matter how many times I had to tell him.
Grieving is the same issue, a person with dementia might ‘find out for the first time’ a sibling or partner had died every time they ask about them.

Get yourself a strategy for dealing with this in advance. I hated telling lies to my dad, but it saved him from agonising over the things he had forgotten. It was much easier him him when I told him ‘yes, mum is downstairs’.

Keep your chin up, it’s a crap situation, but live for the good times and memories :)
My mother had dementia, and it rapidly worsened after my father's death, I can only speak from my own experience, and obviously everyone's will be different.
I have deleted an earlier post because it came across as trivialising dementia in light of a subsequent post by another member.
The lies about never seeing anyone, accusations of theft, arguments for no reason are all upsetting, the whole shitshow is, frankly, horrific. I worked very hard at reminding myself that none of it was aimed at me specifically, that in a weird way it was a privilege to be so trusted as to be so abused.
If Mum was obviously in the mood for a ruck on my arrival I would do a 360, wait 5 minutes, and go back in, when, mostly, all would be sweetness and light.
In terms of lying, or therapeutic lying, pragmatism wins out. Mum's dementia made me take the biggest punt of my life. After Dad died Mum would often ask where he was. The first time this happened I briefly shit myself, then realised there were two options: the truth, deal with the temporary fallout and be prepared to do so again, or lie and be caught out further down the road. I told her Dad was dead pretty much every day for about six months, then she started not to recognise me, then she died three months later.
Please also remember that your friends want to help.
.
 

Slime

LE
My mother had dementia, and it rapidly worsened after my father's death, I can only speak from my own experience, and obviously everyone's will be different.
I have deleted an earlier post because it came across as trivialising dementia in light of a subsequent post by another member.
The lies about never seeing anyone, accusations of theft, arguments for no reason are all upsetting, the whole shitshow is, frankly, horrific. I worked very hard at reminding myself that none of it was aimed at me specifically, that in a weird way it was a privilege to be so trusted as to be so abused.
If Mum was obviously in the mood for a ruck on my arrival I would do a 360, wait 5 minutes, and go back in, when, mostly, all would be sweetness and light.
In terms of lying, or therapeutic lying, pragmatism wins out. Mum's dementia made me take the biggest punt of my life. After Dad died Mum would often ask where he was. The first time this happened I briefly shit myself, then realised there were two options: the truth, deal with the temporary fallout and be prepared to do so again, or lie and be caught out further down the road. I told her Dad was dead pretty much every day for about six months, then she started not to recognise me, then she died three months later.
Please also remember that your friends want to help.
.

Just in case I’ve missed what you meant, what did you mean by ‘lies about never seeing anyone’?
Are you suggesting she knew people had been in, but was telling lies.

With my parents and people I supported in a work environment the people genuinely believed no one had visited.

Fang Farrier mentions paranoia, I’d add fear, feeling stupid and bewilderment to that.
Most of us feel a bit silly if we leave the house and can’t remember if we’ve left the cooker on or a tap running etc. The feeling of not knowing if the house was even ours, where we were or perhaps who we ourselves are must be quite overwhelming.
 

Fang_Farrier

LE
Kit Reviewer
Book Reviewer
Just in case I’ve missed what you meant, what did you mean by ‘lies about never seeing anyone’?
Are you suggesting she knew people had been in, but was telling lies.

With my parents and people I supported in a work environment the people genuinely believed no one had visited.

Fang Farrier mentions paranoia, I’d add fear, feeling stupid and bewilderment to that.
Most of us feel a bit silly if we leave the house and can’t remember if we’ve left the cooker on or a tap running etc. The feeling of not knowing if the house was even ours, where we were or perhaps who we ourselves are must be quite overwhelming.

The early stages, when they know that something is not right can be full of deception.
This is either due to a mis-remembering or not wanting to admit to not knowing or being perceived as old and stupid.

Examples from yesterday's visit to MiL.

What's in the soup? The usual.
Is it fresh? Made it yesterday. (It was fermenting!

Telling us about her recent trip away and the lovely hotel she stayed at. Reality was a hospital for a few days after a fall.

Want to go to xxx beach? That will be lovely, never been there. On arrival, she starts with where to park and where's good to eat.
 
Just in case I’ve missed what you meant, what did you mean by ‘lies about never seeing anyone’?
Are you suggesting she knew people had been in, but was telling lies.

With my parents and people I supported in a work environment the people genuinely believed no one had visited.

Fang Farrier mentions paranoia, I’d add fear, feeling stupid and bewilderment to that.
Most of us feel a bit silly if we leave the house and can’t remember if we’ve left the cooker on or a tap running etc. The feeling of not knowing if the house was even ours, where we were or perhaps who we ourselves are must be quite overwhelming.
She wasn't being malicious, she genuinely believed that she had had no visitors for a week or so.
However, trying to juggle a business, four young children and a marriage put under the massive stress by now having a fifth, 80 year old child a mile away, may have coloured my judgment somewhat.
Yes, she was afraid and confused, so was I. The thing is, no-one told me it was okay to be afraid and confused, nor did they stop by to explain to my wife and children why I had become even more of a massive cnut than I was before due to the stress of the above.
 

Grownup_Rafbrat

LE
Book Reviewer
The early stages, when they know that something is not right can be full of deception.
This is either due to a mis-remembering or not wanting to admit to not knowing or being perceived as old and stupid.

Examples from yesterday's visit to MiL.

What's in the soup? The usual.
Is it fresh? Made it yesterday. (It was fermenting!

Telling us about her recent trip away and the lovely hotel she stayed at. Reality was a hospital for a few days after a fall.

Want to go to xxx beach? That will be lovely, never been there. On arrival, she starts with where to park and where's good to eat.
My aunt used to tell me she never had a visitor. My cousin went in daily, did her shopping, did her laundry and delivered it back to her, his sister visited from her home far away twice a month, the neighbours popped in daily, which I saw when I visited.

I am sure that when she told the social worker she was an only child she believed that, because Father was living in Australia at the time, but it hadn't been true since she was 8 years old.

It's not outright lies, but altered perception. My how we laughed! But at least we could laugh, whether about the night I had six phone calls because the dust men had stolen her bank books, or the neighbour's Sky engineers on the roof had changed the background on the news on her TV.

It's ghastly, but trust and a sense of humour between those dealing with it are essential.
 
My aunt used to tell me she never had a visitor. My cousin went in daily, did her shopping, did her laundry and delivered it back to her, his sister visited from her home far away twice a month, the neighbours popped in daily, which I saw when I visited.

I am sure that when she told the social worker she was an only child she believed that, because Father was living in Australia at the time, but it hadn't been true since she was 8 years old.

It's not outright lies, but altered perception. My how we laughed! But at least we could laugh, whether about the night I had six phone calls because the dust men had stolen her bank books, or the neighbour's Sky engineers on the roof had changed the background on the news on her TV.

It's ghastly, but trust and a sense of humour between those dealing with it are essential.
Is it ever sport, the very comment he's stolen x from me can cause mayhem in a family.
As to he never comes to see me, I've seen family members in tears saying why do I bother.
 

Slime

LE
She wasn't being malicious, she genuinely believed that she had had no visitors for a week or so.
However, trying to juggle a business, four young children and a marriage put under the massive stress by now having a fifth, 80 year old child a mile away, may have coloured my judgment somewhat.
Yes, she was afraid and confused, so was I. The thing is, no-one told me it was okay to be afraid and confused, nor did they stop by to explain to my wife and children why I had become even more of a massive cnut than I was before due to the stress of the above.

I was pretty sure that’s what you meant. :)
Just wanted to be sure.
 
From experience, don't forget your own mental health. You are no good to anyone if this screws you up as well.
I gave it all Charlie Big Potatoes about "getting help" and "having counselling " and then did sod all.
 
Last edited:

Chef

LE
Pretty much everything said here has applied to a greater or lesser degree with my late father and MiL.

Asking after relatives who were long gone was one of the MiL's constant questions. my dad was visited everyday in hospital by mum but would still ask why she hadn't been for a while. I used to go once a week and the hardest thing was talking about his plans for when he came home.

There was an element of paranoia with the MiL who was sure the staff were robbing her and bullying her. That last caused us a bit of worry but on a few occasions when we saw her and the interaction with the staff it tended to be how she interpreted it. Which was a relief. As she was bilingual phone chats between her and Mrs Chef were an interesting mish mash of English, French and the odd bit of Arabic.

@Slime It's always easier dealing with someone you don't know. I found it very frustrating talking to two people I knew were intelligent, capable people as if they were two year olds. No matter how much I tried to remind myself that they weren't all there, in the back of my mind was the memory of them both as they were.

I remember when dad was being moved from one bed to another and just for a second I think he had full awareness of where he was and what his prospects were. I've never seen a man so frightened.
 

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