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Recently diagonsed - denial

Kaylong

New member
Feb 22, 2020
2
Hi all,

I live in a different country to my mum, who was recently diagnosed with Alzheimer's. I wasn't present at her diagnosis, but her husband was there - and, faced with her test results, she seemed to acknowledge that she wasn't doing as well as she had thought she would. We thought this might get her to open up about this more and accept her situation, but she decided that nobody should know about it.
As her husband (who has several medical conditions of his own, and is 82 compared to her 73), is her carer, and she has instances of memory loss and delusions while they are at home alone, she does talk to him about it as it comes up - though she does her best to come up with reasons for why she forgot names, people, things, whatever it is. She has been very clear with him that he can't say anything about this to anyone else though. The only reason I even know about the diagnosis is that he sends me emails in secret.

I am concerned for them both, and I know that he is struggling. I think my mother has a huge stigma around mental illnesses and dementia - and one of her recurring delusions is that I have shouted at her and called her dementic (obviously never happened). She wants me to apologise for it, according to my step-father, but she has never brought this up with me - neither the instance of shouting that didn't happen, or the need for an apology. So far, I think it would be a bad idea to bring this up if she isn't bringing it up, and to fake an apology for something that never happened.

Anyway, I'd be interested in any suggestions for how to get her to talk to me about her diagnosis. It would make it easier for us to help both her and her husband. How do you deal with denial that persists beyond a diagnosis? I think that she, under the layers of denial, is very fearful and upset.

I also think that my step-father could do with quite a lot of care for himself too, if I'm honest. But I don't think she is capable to provide it. He will see the GP about his own issues in a couple of weeks.

All help is welcome.

Kay x
 

karaokePete

Registered User
Jul 23, 2017
5,286
N Ireland
Hello @Kaylong you are welcome here and I hope you find the forum to be a friendly and supportive place.

I hope you have time to take a good look around the site as it is a goldmine for information. When I first joined I read old threads for information but then found the AS Publications list and the page where a post code search can be done to check for support services in ones own area. If you are interested in these, clicking the following links will take you there

https://www.alzheimers.org.uk/get-support/publications-factsheets-full-list

https://www.alzheimers.org.uk/find-support-near-you

You will see that there are Factsheets that will help with things like getting care needs assessments, deciding the level of care required and sorting out useful things like Wills, Power of Attorney etc., if any of that hasn't already been done. There is also a Dementia Guide in the list.

Now that you have found us I hope you will keep posting as the membership has vast collective knowledge and experience.

As communicating has become an issue, a few handy tips can be picked from the useful thread that can be reached with this link https://forum.alzheimers.org.uk/threads/compassionate-communication-with-the-memory-impaired.30801/
 

karaokePete

Registered User
Jul 23, 2017
5,286
N Ireland
I should have mentioned that I think it is a good idea to let people know about the diagnosis as, in general, people can be more patient and kind when they know that a person has possible issues with confusion etc.

When my wife was diagnosed she told me not to tell anyone but I went against her wishes and have always been glad that I did as in the early days we were still socially active and people looked out for her.

Of course, that may not work for everyone.
 

canary

Registered User
Feb 25, 2014
11,657
South coast
Hello @Kaylong and welcome from me too.

To be honest, I think it unlikely that you be able to get her to talk about her diagnosis. This sort of denial is actually a symptom of dementia, where they lose the insight that they are having problems (its called anosognosia) and they think everything is absolutely fine and they arent having any problems, even when everything is falling apart around them.

My mum never acknowledged that she had Alzheimers, so I just referred to her memory loss and even then she dismissed it as just something you get as you get old and wouldnt talk about it. My OH will agree that he has various symptoms, but will deny that they are causing problems. His is convinced that he is still capable of doing everything and if you ask him why he doesnt do things he will say that he is lazy, or that I am stopping him from doing them, or something like that. He doesnt seem to realise that he just cant do them anymore.

I expect that their friends have already guessed that your mum has dementia. It seems awful going behind your mums back, but sometimes you have to do things that they need, rather than what they want.
 

RosettaT

Registered User
Sep 9, 2018
436
Mid Lincs
I agree, my OH didn't want anyone to know and I respected his wishes until he was hospitalised. It put immense pressure on me and I was astounded at the support our true friends gave
us. Make no mistake some find it hard to handle, promise to come and see you but never materialise, but getting out in the open was the best thing that happened.
 

Kaylong

New member
Feb 22, 2020
2
Thank you so much for the support @karaokePete @canary and @RosettaT - and for all the advice.
As my mum lives in another country, I think I'll need to explore the support services available there. (And possibly consider moving over too eventually). At the moment, everything supportive is happening through my step-dad, and it is lovely of him to be such a great support to her - but I think it is rather a lot for him to take on on his own. Gosh, all carers deserve a medal!

Thanks for introducing me to anosognosia @canary - it sounds very much like it fits with mum's situation.

Kay x