How do you handle a person with dementia

[PaulC10]

This is a problem I face every time I visit my Dad who is in care back in the NE of England. I go to see him one weekend a month and invariably one of the 2 days visiting is taken up with him telling me that 'they' (the staff) won't tell him where my Mam is living but that he knows she's somewhere else in the City and that he doesn't know why 'they' won't allow them to be together and go bac to their house.

My Mam passed away in Sept 2011

At first I used to try to gently tell him that she had passed away, that simply led to floods of tears, denial, anger , and remorse that he hadn't been at her funeral (He was there but simply doesn't recall it). As time has passed I've now grown used to adopting diversionary tactics and simply moving the conversation on elsewhere without really addressing his questions or telling him that she's no longer with us.

It's not easy and feels like I'm being deceitful but I know it would simply be forgotten within the hour and all that pain would be for no benefit.

Although it's an approach I felt uneasy with at first I know now in my heart that it's the right one , but there are times when he's spoken to me on the phone and I've simply lied and said I'll get in touch with her for him - that's the time it hurts the most.

 

[skaface]

Thank you all very much for your kind replies.

I thought I was in for an upsetting time, but she's never mentioned it since!

I had to laugh at Christmas 2013 - she'd been going on for some time how the woman next door had "killed herself" - she couldn't tell me how she'd found this out, so it was very obviously nonsense, but I played along with it.

To my surprise, when I took my mum shopping at Sainsbury's a woman came bounding up and introduced herself as...the woman next door! So I (very) gently asked mum about it and she (as expected) didn't have an answer as to why the person she insisted was dead was so very much alive!

I'm dreading when my aunt (her older sister) dies (if she dies before mum does) as she didn't want to go to my aunt's husband's funeral in 2009 and only went because I inisisted (she hadn't been diagnosed then) I didn't want to be the only member of our side of the family there. I doubt very much that she will want to go to my aunt's funeral and I will go alone if needs be.

 

[Month]

My Father asked this question, "Where's Mother & Father?"
My answer was "I don't know, I haven't seen them for years."
Perfectly true, one died in the sixties, the other the seventies.

Just try to be truthful, and vague, that way you won't get caught out.
Remember your answer, most likely won't be remembered, so can be repeated with out too much thought.


Bod

I agree with most of you, especially Bod. When my mum asked me if I had seen her mother (who had died 30 years previously) I would just say "no, not today". She would be quite happy with that.

In her early stages of Alzheimer's I tried to gently explain and she would be shocked, but learned, as time went on, to go along with things as simply as possible.

 

[Month]

I have dementia and me and my duaghters have discussed this. We eventually all agreed to go along with the story, after all, what does it matter if she believes someone is alive that died years ago. In a few minutes she will have forgotten the conversation and may start it all over again. To simply go along with it means your mum will not continue to go through the trauma each time you contradict her. I always tell my girls to think 'what does it matter if I've got things wrong'

It's lovely to hear from someone who actually has dementia, and reassuring that carers and relatives are doing the right thing. We all aim to be kind and respectful but it can be difficult sometimes. Thank you.

 

[Month]

I'm new to being a carer for my mum. When I read the following it all made perfect sense and have been doing it ever since.

Don't have unrealistic expectations.
Don't argue/ explain / try to reason / confront / remind them that they have forgotten / ask questions / or take it personally.
They can't change - you have to be flexible and adaptable.
Show rather than tell - body language.
Repeat instructions exactly.
Use distractions especially music /reminiscence therapy / cajole, (I suggest a cup of milo)
Praise for what they can still do - respect their feelings.
Ask yourself "Does it really matter)
Above all - keep your sense of humor!
I take each day as it comes and love mum as she is. Still my mother.

Hope that is some help. ☺

That's lovely. I lost my mum in September to Alzheimer's and these guidelines would have been a great help.

 

[Jenn]

I just go with the flow, if Mum thinks her Dad is in the next room or her Mum has just visited I just play along with it. I don't encourage it as such, I just say things like `Ooo I've not seen them recently!' I do not contradict her because if I tell her they're dead then she'll be upset, only for her to forget and then be upset all over again next time I visit which would be awful. I kind of take the attitude that to us memories are linear ie they only flow one way, but to her all life is spread around her in a heap and there is no order - and that form of reality is ok if you're not confronted with the other kind.
Curiously she never mentions my Dad in all of this - he died 5 years ago. Maybe that left too deep an impression. I can see though it might be really upsetting if you were affected deeply by the person who's died and who she now believes is alive, that must be very hard to deal with, I am sorry.

 

[neetnpete]

I was told when my uncle was first diagnosed that you should always tell them the truth. He used to get very distressed when I had to tell him that his mum and dad were no longer alive.
However, I was then told that it was best not to tell them the truth as each time they have to go through the grieving process again - which made perfect sense to me. Like others, I am rather evasive with him but this keeps him calm, so he is quite content in his world as long as you give lots of reassurance.
It is a terrible disease, but often more distressing for the loved ones who can see the person in the physical sense, but it is just an empty shell, truly heartbreaking.

believing that someone who died a quarter of a century ago is still alive?

My mum has mixed dementia and today said she was going to go and stay with her mum - I gently reminded her that her mum had died in 1990 but she adamantly refused to believe this and said yes, her DAD had died suddenly (which he did, in 1972) but that her mum was still very much alive.

So I asked her where my grandmother was living now, and she said she didn't know.

The cruel part is that her mum was 92 when she died but had all her mental faculties and was as sharp as a knife until two days before she died - she would be horribly upset to know how unhappy her daughter is now. My aunt, my mum's older sister, is 88 and also has all her faculties and is dreadfully upset at how this horrible disease is robbing us of her sister day by day.

So, what is the best approach to take - do I play along with it, or do I tell her gently but firmly that her mum has been dead for a long time? I don't want to upset her either way.

 

[PODGEO]

vALIDATION THERAPY

Please do not think me pompous; I certainly do not have answer to everything;but heads wiser than mine have told me you must empathise with the feelings displayed; not respond to the literal question posed
Your mum is feeling insecure or needs comforting or whatever; you are the best person to know what emotion she is feeling; and that emotion/feeling needs validation; eg I know mum; I miss gran as well ;wasn't she lovely.....then go on to some pleasant memories of what your gran did; share these emotions with her.
Reality orientation .......the time is long past; it is only alright in very early dementia; your mum does not need it now
best wishes
Podgeo

believing that someone who died a quarter of a century ago is still alive?

My mum has mixed dementia and today said she was going to go and stay with her mum - I gently reminded her that her mum had died in 1990 but she adamantly refused to believe this and said yes, her DAD had died suddenly (which he did, in 1972) but that her mum was still very much alive.

So I asked her where my grandmother was living now, and she said she didn't know.

The cruel part is that her mum was 92 when she died but had all her mental faculties and was as sharp as a knife until two days before she died - she would be horribly upset to know how unhappy her daughter is now. My aunt, my mum's older sister, is 88 and also has all her faculties and is dreadfully upset at how this horrible disease is robbing us of her sister day by day.

So, what is the best approach to take - do I play along with it, or do I tell her gently but firmly that her mum has been dead for a long time? I don't want to upset her either way.

 

[Jojo62]

[/QUOTE]
So, what is the best approach to take - do I play along with it, or do I tell her gently but firmly that her mum has been dead for a long time? I don't want to upset her either way.[/QUOTE]

My mother asks about my father every day. I used to sit with her and explain that he had passed away but that was so devastating that we were grieving Dad every day. It consistently hurt so much that I decided to lie.
I now tell her he is Tully (which is in Nth QLD and we're in Sydney), so that it's believable that he is working on a job up there and will be home in a few weeks when the job is done. He used to do that anyway, so it's believable and far enough that he is unable to come home for the weekend or in a hurry.
We still have grief because she expects him to phone, write or come home and she misses him terribly and cries because she misses him but it's better than grieving his death daily.
I believe it's worth making up a story and sticking to it. Whatever works for everyone involved. This is a very sad disease. Very difficult to handle
All the best

 

[Jojo62]

I'm new to being a carer for my mum. When I read the following it all made perfect sense and have been doing it ever since.

Don't have unrealistic expectations.
Don't argue/ explain / try to reason / confront / remind them that they have forgotten / ask questions / or take it personally.
They can't change - you have to be flexible and adaptable.
Show rather than tell - body language.
Repeat instructions exactly.
Use distractions especially music /reminiscence therapy / cajole, (I suggest a cup of milo)
Praise for what they can still do - respect their feelings.
Ask yourself "Does it really matter)
Above all - keep your sense of humor!
I take each day as it comes and love mum as she is. Still my mother.

Hope that is some help. ☺

Great advice. Remembering it at the right time is the difficult part

 

[Pear trees]

As others have said, I find it best to try to divert mum onto something else or say we will do it later. I just smile and wave like the penguins from Madagascar!

 

[Grey Lad]

As others have said, I find it best to try to divert mum onto something else or say we will do it later. I just smile and wave like the penguins from Madagascar!

Never thought of this analogy myself but I think it is sound advice. Sticking to it hour after hour, day after day, is my problem: particularly when I am tired!

 

[Witzend]

As others have said, I find it best to try to divert mum onto something else or say we will do it later. I just smile and wave like the penguins from Madagascar!

Maybe we were just unlucky, but distraction/diversion never worked with either my mother or my FIL. No matter what I tried, if they had some bee buzzing insistently in their heads, nothing worked for more than 20 or 30 seconds at best. It was like trying to distract a wasp from a jam jar.

My mother is way past that stage now, and poor old FIL long gone, but I really used to envy anyone whose relative could be distracted with 'a nice cup of tea'. If ours could have been, maybe I would never have needed to become so adept at thinking up plausible fibs that just rolled off the tongue as if I were a born liar.

 

[frascati]

Paralell World

My mum always tells me that my dad hasn't visited her. He died 7 years ago. Initially I found it very distressing to pretend he was still alive, especially as we were still grieving for him ourselves. I did try to explain that he had died, but mum just couldn't take it in. I did not like lying to her and found it distressing and some how disrespectful to my dad, to pretend. Mum went to the funeral but does not remember, so in her world he is still alive. Over the years (and there are more to come I'm sure) I've become an accomplished liar, telling mum he's playing golf, lunching with a client, watching the football. Mum also asks me if I've seen my granddad recently, so I just say no (which is the truth of course). Distraction is key to coping, change the conversation to weather or something trivial.
The whole Alzheimers world is a learning curve, one you learn as you go along together with your loved one.

 

[Mary9]

I sympathise

My Mom is exactly the same and for that moment I play along with her, Mom believes her Mother and my Dad are both still alive and they have both been long gone 28yrs plus, but at that moment in her mind it is what they believe, just try to change the subject to anything, that is what I do, I find myself just babbling on about anything, but it usually does the job, I know it
isn't nice, but it is only little white lies, take care x

 

[tweetypie]

Do whatever you want to make your life easier.

Dementia is so difficult to live with and can often go on and on for years and years and longer than you can ever imagine sometimes.

It varies.

So just do what you feel is best for you - because you are important and need to care about yourself

 

[Nightnurse]

My dad thinks his mum is alive and that she moved us into the house we now live in and have done so for the last 22yrs, we bought this place after the council house we had was burgled every time we went away for a break. I have tried all ways but nine times out ten I have got really stuck, then the other day he said we lived with his sister who lives the other side of Bristol to us and has her own family but now I have the problem of him now saying he has to go home so have had to take is keys off him and keep all doors locked, it doesn't stop him packing bags but not the way we would have if we were going away. I have contacted my GP and the local dementia team for help with needing sedation to calm him down otherwise I could get hurt again but all I got was his Dr was on leave and they will try and get one of the other drs to speak to us and they didn't despite the Gp asking them to do something by the end of the week. It doesn't help that I'm not in good health myself

 

[Ladydog]

Perhaps it is sometimes easier to tell the truth

Hello everyone.

This is my first contribution, and I have been reading all of your's with great interest. It seems I am in the minority regarding dealing with questions about long-dead relatives. My husband is 95 and has been in a care home for 14 months He did not develop dementia until he was 90 so I count my blessings when I hear about the much younger people who contract this terrible illness. I looked after him at home until he needed so much help physically that I just could not cope.
At first, and occasionally even now, he would ask how his parents were, or were they still alive and right from the start I said no, they have been dead for over 40 years. Mercifully, he accepted this quite calmly and did not pursue the matter. Perhaps I was lucky, but on balance I think it was the right decision. It was pitiful watching some of the other very old residents asking for their mother or even grandmother, and having to be told over and over again that they had gone shopping for example.

 

[Pottingshed50]

Pitiful but kind in my opinion. I gave up telling Mum the truth many moons ago , now we just go along with it. They are in their own world and quite frankly I am thankful at times that our Mum is. She was such a feisty old biddy , she would have been very upset to think of how she is now.

 

[Witzend]

Hello everyone.

Perhaps I was lucky, but on balance I think it was the right decision. It was pitiful watching some of the other very old residents asking for their mother or even grandmother, and having to be told over and over again that they had gone shopping for example.

A lot will depend on the individual. If someone becomes very distressed on being told that their relative is dead, it is kinder to tell a fib that will keep them happy. Otherwise they will only be upset over and over again. And you have to wonder, for what? If short term memory is already very bad, it is unlikely that the truth will eventually 'sink in'.

If someone can accept the truth calmly, there is no dilemma. The trouble is that many dementia sufferers cannot.