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Trying to help Mum understand she has dementia

Nutmeg39

New member
May 4, 2021
2
0
Hello
I am new to the forum, but already feel very reassured that people have the same issues and I am in many ways doing my best. My Mum (85) lives alone 5 hours away with dementia (I would say mid stage). She has carers each morning for 30 minutes to hep with medication, but will not accept any more input from them. We have scaled it up and had to scale it all back down again when she gets angry and insists they leave. Covid has made her situation even worse, no distractions, not seeing friends, clubs being shut. She does all the usual - losing things all the time, repetitive phone calls, lots of upset looking for my Dad who died 10 years ago and catastrophising when even something very minor goes wrong.

The latest development is what I would really like some advice on, she has started asking my sister and I over and over again why she is so confused, why she keeps making mistakes - her words. We calmly explain she has dementia, but that she is doing a lot right - lots of walks (about an hour a day), eating healthily, doing puzzles etc... but we can't say she is going to get better. The calls end with her sounding crushed and very bleak, even when we try and change the subject etc..

Is there anything else we should be saying ? She doesn't have great grip on reality, but if we said it was treatable she would latch onto that and we would have to back peddle.

Thanks for any advice.
 

Sarasa

Volunteer Host
Apr 13, 2018
3,028
0
Hi @Nutmeg39 and welcome to Dementia Talking Point. This is a very supportive community and you'll get lots of help and advice here.
I wonder if the Compassionate Communication with the Memory Impaired thread would be helpful. Maybe distract when your mum wonders why she is so confused. I'm not sure if mentioning she has dementia helps. Certainly any suggestions that my mother had dementia was met with flat denial.
However it also sounds like your mother probably needs more help than she's getting at the moment. Is there anyway to re-introduce carers by saying your mum would be doing the company a favour with training new staff or anything similar that would make her feel more in control.
My mother only lived an hour and a half away from me, but that was too far for me to get there in an emergency, and there were an increasing number of those. In the end mum moved to a care home near me. Have you thought about the next stage when your mum will need more care. It sounds like it might be needed sooner rather than later.
I'm sure others will be along shortly with more suggestions, but in the meantime have a look round. Using the search bar will help you find other threads about similar topics. Some of the threads will be quite old so the posters may no longer be active here, but it might help you find some other suggestions as to how to support your mum.
 

Duggies-girl

Registered User
Sep 6, 2017
2,549
0
I used to tell my dad that he hadn't been well, which was true and that I was helping him out just for a while. I soon learned not to mention dementia or alzhiemers because he didn't have that and he had never had it.

I would give up now with the dementia diagnosis and change it to an age related memory problem, that everyone gets once past a certain age because that seems to be acceptable to most.

It's very hard but I would say don't make it harder for yourself or your mum. Just fob it off as age related memory problems and you are just there to help.
 

AwayWithTheFairies

Registered User
Apr 21, 2021
141
0
Even if she understands and accepts it (or any new concept), she won’t retain it if she’s like my mum. There’s no point giving her this horrific “new” realisation, over and over. It’s like when they are looking for a relative who has died long ago, if you tell them so, it’s a horrible new first-time, each time. Not everyone does this I gather, but it’s very common. It’s hard to get your own head round! But they just cant’, if they do it’s for the first time. What a nightmare this disease is! I am gradually learning to change the subject and fob off and make some plausible explanation to deflect.
 

canary

Registered User
Feb 25, 2014
15,188
0
South coast
she has started asking my sister and I over and over again why she is so confused, why she keeps making mistakes - her words. We calmly explain she has dementia, but that she is doing a lot right - lots of walks (about an hour a day), eating healthily, doing puzzles etc... but we can't say she is going to get better. The calls end with her sounding crushed and very bleak, even when we try and change the subject etc.
Hi @Nutmeg39
I wouldnt actually keep explaining that she has dementia. Every time that you tell her she is devastated because it is like the first time that she has heard. She soon forgets, but people with dementia, although they forget what has happened, they retain the memory of how they feel, so she retains this horrible feeling that something is wrong with her and keeps asking, which simply reinforces this horrible feeling and it it is becoming a behavioural loop.

Try and be very vague about it. I agree, dont tell her she will get better, but equally, dont tell her any details of what is happening to her. She needs reassurance instead. Mum asked me the same thing a couple of times when she had a lucid moment and I just said - I know, mum, but I will make sure you are OK, so dont worry about it, Then try and distract.
 

Nutmeg39

New member
May 4, 2021
2
0
Many thanks for all the wise words, I will try and put some of this into action, will be easier face to face than on the phone. I also picked up from another thread about focussing very much on what she can do, which admittedly isn't much, but may help her feel better about herself.
 

LunaJ

New member
Mar 24, 2021
7
0
Hi @Nutmeg39 ,
I am also fairly new here, my Mother was disgnosed in March, but the illness had clearly been progressing for some time before then.
I'd posted on exactly this subject recently, my Mother was present on a video call with me when the doctor gave the diagnosis, but I don't think she understood it at all. She just thinks she has some memory problems, which will be resolved when lockdown is over and life goes back to some normality.
I have felt a bit deceitful, making decisions about her life when she's not aware of the rationale behind it and I did wonder if I should be trying to make her understand the dementia diagnosis, and involving her more in the decision making.
At times, even without her knowing what's wrong, she can get very despondent, doesn't see the point of life going on and is possibly bordering on depression. It's difficult for me to lift her mood in those moments, and I think if she truly understood the likely progression of her illness she would just sink into a black hole.
After the advice on my post, I made the decision not to try and make her understand. She often has days where she's fairly lucid, and I think knowing the nature of her illness would remove any enjoyment and quality of life she still gets from those times.
I just refer to it as 'memory problems', and try to take it as it comes.
It's not easy though, especially as she keeps asking me what we can do about this, and who can we contact that can help her get better.