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What to say and do?

Sunshine11!

Registered User
Feb 11, 2022
22
0
Since her Alzheimers diagnosis in January, Mum's memory seems to be getting much worse . I'm struggling to know how to talk to my lovely Mum and today found it very upsetting. I know that she will tell me one thing one day, and something totally different the next and I never challenge her on that. The silences are becoming longer - do I need to fill them? I feel guilty when I don't and guilty when I do!

Any advice and so sorry if this seems like I'm wallowing in pity!
 

jaymor

Volunteer Moderator
Jul 14, 2006
15,145
0
South Staffordshire
Your Mum might be quite happy with the silences and content with your company especially if she is starting to struggle with words. Maybe break the silences with a few words that really don’t require an answer or need just a few Words. E.g. It looks like it might rain. I think I’ll start knitting again, anything that breaks the silence but does not put pressure on your Mum to answer.

this might be useful.



Compassionate Communication with the Memory Impaired

by Liz Ayres
A Volunteer of the Alzheimer's Association and Former Caregiver

DON'T
Don’t reason.
Don’t argue.
Don’t confront.
Don’t remind them they forget.
Don’t question recent memory.
Don’t take it personally.



DO
Give short, one sentence explanations.
Allow plenty of time for comprehension, then triple it.
Repeat instructions or sentences exactly the same way.
Eliminate 'but' from your vocabulary; substitute 'nevertheless.'
Avoid insistence. Try again later
Agree with them or distract them to a different subject or activity
Accept blame when something’s wrong (even if it’s fantasy).
Leave the room, if necessary, to avoid confrontations.
Respond to feelings rather than words
Be patient and cheerful and reassuring. Do go with the flow.
Practice 100% forgiveness. Memory loss progresses daily.
My appeal to you: Please.elevate your level of generosity and graciousness.
 

Kath610

Registered User
Apr 6, 2022
32
0
Maldon, Essex
I want to add: don't give yourself a hard time if you can't manage the above. I certainly couldn't.
I think I have just done all the don’ts on the list - my husband has taken himself off to bed at 6:20pm, refused to have dinner (currently being cooked) and I am too fed up to try and be reasonable and understanding. We only had the Alzheimer’s diagnosis a month ago though we have been living with it for the best part of 3 years.
I am not looking for sympathy but how do other people cope? I am so fed up with our life - we have been married for 46 years and it has been good. But all I can think now is the unknown number of years I am going to have to live this life as a carer.
 

Sarasa

Volunteer Host
Apr 13, 2018
5,024
0
Nottinghamshire
Hi @Kath610 , I've never met anyone who could do all the things you are supposed to do to keep a loved one with dementia happy all the time. Hopefully either your husband will get up in a bit and you can go for a reset of the situation, or tomorrow is another day and things might be a bit better. Do you have any help in or does your husband go to any clubs or a day centre. Now might be the time to get those sort of things organised.
At least you know that here you are in a safe space to let of steam.
 

CAL Y

Registered User
Jul 17, 2021
361
0
I think I have just done all the don’ts on the list - my husband has taken himself off to bed at 6:20pm, refused to have dinner (currently being cooked) and I am too fed up to try and be reasonable and understanding. We only had the Alzheimer’s diagnosis a month ago though we have been living with it for the best part of 3 years.
I am not looking for sympathy but how do other people cope? I am so fed up with our life - we have been married for 46 years and it has been good. But all I can think now is the unknown number of years I am going to have to live this life as a carer.
Hello @Kath610 I have loads of sympathy for you and your situation.
I think that the truth is, we might look as though we are coping but like the proverbial swan gliding across the water our feet are paddling like mad.
I know that when my husband was diagnosed, in my mind I was like a toddler having a tantrum.
”I don’t want to be a carer, it’s not fair etc” . It really does turn your life upside down.
 

Kath610

Registered User
Apr 6, 2022
32
0
Maldon, Essex
Hello @Kath610 I have loads of sympathy for you and your situation.
I think that the truth is, we might look as though we are coping but like the proverbial swan gliding across the water our feet are paddling like mad.
I know that when my husband was diagnosed, in my mind I was like a toddler having a tantrum.
”I don’t want to be a carer, it’s not fair etc” . It really does turn your life upside down.
Thank you for responding - I think exactly that several times a day. We are lucky in that we have very supportive family and good friends and it’s great when they are around. The difficult bit is when we go home. I know my husband did not choose this.
 

Kath610

Registered User
Apr 6, 2022
32
0
Maldon, Essex
Hi @Kath610 , I've never met anyone who could do all the things you are supposed to do to keep a loved one with dementia happy all the time. Hopefully either your husband will get up in a bit and you can go for a reset of the situation, or tomorrow is another day and things might be a bit better. Do you have any help in or does your husband go to any clubs or a day centre. Now might be the time to get those sort of things organised.
At least you know that here you are in a safe space to let of steam.
Thanks Sarasa, things did improve last night - my husband is still at the stage where he recognises when he’s gone too far and he has apologised. He has made a big decision this week and given up driving - a decision which has really brought home to him what Alzheimer’s is going to do to his life.
The list is really useful and so is this forum
Hi @Kath610 , I've never met anyone who could do all the things you are supposed to do to keep a loved one with dementia happy all the time. Hopefully either your husband will get up in a bit and you can go for a reset of the situation, or tomorrow is another day and things might be a bit better. Do you have any help in or does your husband go to any clubs or a day centre. Now might be the time to get those sort of things organised.
At least you know that here you are in a safe space to let of steam.
 

Sunshine11!

Registered User
Feb 11, 2022
22
0
Hi Kath610
Just wanted to reiterate the don’t beat yourself up thread when you feel like this. It’s so so hard but I’m finding Talking Point so supportive and non judgemental. When it’s someone you love, like my mum, it’s tough.
Take care
 

Kath610

Registered User
Apr 6, 2022
32
0
Maldon, Essex
Hi Kath610
Just wanted to reiterate the don’t beat yourself up thread when you feel like this. It’s so so hard but I’m finding Talking Point so supportive and non judgemental. When it’s someone you love, like my mum, it’s tough.
Take care
Yes I am seeing that and am so glad to have found this forum. I am feeling very resentful and self pitying, then guilty because I know my husband didn’t choose to have Alzheimer’s. I cope because I have to - like everyone else on here - and the list is very useful. Thank you for responding
 

Lawson58

Registered User
Aug 1, 2014
2,895
0
Victoria, Australia
I think I have just done all the don’ts on the list - my husband has taken himself off to bed at 6:20pm, refused to have dinner (currently being cooked) and I am too fed up to try and be reasonable and understanding. We only had the Alzheimer’s diagnosis a month ago though we have been living with it for the best part of 3 years.
I am not looking for sympathy but how do other people cope? I am so fed up with our life - we have been married for 46 years and it has been good. But all I can think now is the unknown number of years I am going to have to live this life as a carer.
It certainly gets rather daunting when you finally get a diagnosis after three years of what I call the destructive years. Those preceding years are when you know something is wrong but not really sure what is going on, the difficult moods and the irrational responses, the accusations and the outbursts.

I have always said that from now on, your life will be like looking through a tunnel, knowing that there should be a light at the end but no matter how hard you look, it simply isn’t there.

I use to daydream about all the travels I was going to do, have plans of where I would go and what I would do.
That used to keep me going for ages, just thinking about a future that one day I might actually manage. COVID intervened and made a proper mess of that, and now war in Ukraine is rolling the narrative along too.

But it was never easy. I suffered anger, resentment and finally depression. We have got through eight years since diagnosis and haven’t killed each other yet. At the moment we are in a good place and have had peace for some months so all you can do is dodge the bullets, develop a crocodile skin (impervious to about everything) and take care of yourself.
 

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