Grandmother diagnosed recently, need advice

jordnnicole

New member
Dec 5, 2021
2
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Hello everyone. I’ve been reading a couple of posts to try and see if I could get ideas on dealing with my grandmother, but I figure I would post to get specific advice.

Recently, my 83 year old grandmother was diagnosed with dementia with Lewy bodies. We have seen a decline in the past year after my grandpa died September 2020. Ever since, she has had all the signs and we got her official diagnosis a few days ago through cognitive testing, but she had been diagnosed through two other neurologists months ago.
She is, as to be expected, not dealing well with it. Not accepting the diagnosis and wanting “a second opinion” but even though she’s really had three. She’s being hardest on my aunt, who is with her while we are 4 hours away, and says that my aunt was the one to diagnose her due to her and my cousin being the ones to help answer and field the questions with her neurologist. They would ask her if she has had any wrecks, for example. She would reply no but my aunt would say that she had a few (which is the truth) when she lightly hit a car in front of her in a drive through and has hit cars with her door in parking lots. Not exactly major wrecks but they should count a bit. Anyway, this is the reason she thinks she wasn’t correctly diagnosed, but all the testing she did on her own (resistance on hand test, seeing if she remembered 3 words the doctor asked her to, etc). We are having trouble trying to tell her this was not done out of spite by my aunt, and my aunt is getting emotionally drained by her mom taking it out on her. We also have trouble convincing her she needs 24/7 care, because she falls a lot, forgets to take medications or takes them wrong, and has two dogs she takes care of but won’t give them up.

There’s so much more I could probably say and give examples of, such as her constant and forgetting of her spending, but I know this post is already long. I really need help and advice on really just telling her we are not trying to diagnose her ourselves, not doing this to hurt her, stuff like that. She thinks we are just “trying to put her in a home” which is not the truth, it’s recommended and she doesn’t want someone staying with her, she says she doesn’t need it. Anyone have advice on navigating? This has happened all so fast and we don’t have any experience.
 

jaymor

Registered User
Jul 14, 2006
15,604
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South Staffordshire
Hi @jordnnicole and welcome to the forum.

Your Grandmother’s behaviour is very typical of many people with dementia From her denials to her attitude to your Aunt. My husband would misplace or put away safely (hide) things and we would look for them. If I found them then I was accused of hiding, he would never put anything in such a silly place he would say, so I was accused of doing it to make him look worse. It was me with the problem not him.

Your Aunt will get the backlash of his anxiety and distress, she is the one who is constant in his life. My husband was sweetness and light when our family came to visit then once they had gone it was back to taking his frustrations out on me. For me it was divert away from ‘the trouble’ by walking away, offering a drink or asking him to do a small job for me that was within his capability. If that didn’t work then I’d say “ sorry you feel like that” and take myself right away from the situation hoping that the sorry was accepted by him that I was wrong and he was right and the battle was over.

https://forum.alzheimers.org.uk/threads/compassionate-communication-with-the-memory-impaired.30801/

The above is a link to compassionate communication, some ideas as to how to answer or deal with problems with communicating without upsetting a person with dementia. It won’t always work, when dealing with dementia it’s never the the same two days running.
 
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Bunpoots

Volunteer Host
Apr 1, 2016
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Nottinghamshire
Welcome from me too @jordnnicole

With my dad I found that agreeing with him that the doctors were idiots and saying I’d phone them later and complain usually satisfied. I’d then distract him with with something he enjoyed, maybe a coffee, a visit to a garden centre or fish and chips for lunch. I put on a fair amount of weight while I was looking after my dad ?.

The Compassionate communication posted by @jaymor was very useful for ideas and I also watched a lot of Teepa Snow videos on YouTube which were excellent for instructions on how to avoid conflict with people with dementia and get them to cooperate with what had to be done.
 

jordnnicole

New member
Dec 5, 2021
2
0
@jaymor @Bunpoots Thank you both very much for the advice, I will pass it along! It has been something very new for us to navigate and my aunt has always felt that my grandmother has treated her different compared to my mother and my uncle, so she takes it a bit to heart more than she probably should.

We know that assisted living is probably her best option. We don’t like that she is home alone anyway, but knowing that she can fall and hurt herself, forget that the stove is on or something, etc, we try to convince her to have 24/7 care at the very least but she doesn’t want that. She is stubborn.
 

Violet Jane

Registered User
Aug 23, 2021
2,015
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An immediate concern is your grandmother’s driving (if she is still driving). Has her diagnosis been reported to the DVLA / has she been told to stop driving?