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Advice about caregiver denial and seeking diagnosis

Belle185

New member
Apr 27, 2021
5
0
Hi, I could really do with some advice about my nan. She is in her early 70's and I believe has been suffering with undiagnosed alzheimers for the last 5-6 years. She lives with my Grandad who is in his 80's but in very good health. Unfortunately my Grandad seems to be in complete denial about her symptoms. I saw them for the first time since Christmas this weekend and was shocked by her appearance and demeanour. My grandad has taken her to the Drs at various points over the course of the last few years. But it seems until recently they had a pretty useless GP. Thankfully that GP has just retired and they saw a new one at the end of last year, who ordered a myriad of tests, MRI's etc. When I spoke to my Grandad about this he said that the hospital called and told him that they didn't think she needed the tests. I don't think he would lie about this but I think that as it was during the last COVID peak the hospital were probably clearing the decks of anything but priority patients. Anyway I guess what I'm interested in hearing is if there is anything I can do. I don't want to jeopardise my relationship with my grandad and I have tried speaking to him about her health on many occasion's already (there is always another reason in his mind). I was considering writing a letter directly to their GP to express my concerns. Not sure if that would be a good idea or not. I just so desperately want her to get the help she deserves before she completely deteriorates . Thanks for reading.
 

Bunpoots

Volunteer Host
Apr 1, 2016
5,379
0
Nottinghamshire
Welcome to Dementia Talking Point @Belle185

It’s quite common for people to react like your grandparents and play down the difficulties they’re having. I think a letter to their GP about your concerns is a good idea and it’s something that other people have had to do. It might be a good idea to let the GP know your grandparents don’t know you’re writing so they can be discreet if they contact your grandparents. It is possible that the tests were cancelled because of the covid situation but I think I’d let the GP know about it. My dad’s GP would’ve wanted to know why the tests were cancelled and re-ordered them.

The GP won’t be able to tell you anything without your grandparents permission but you can let them know what’s been happening.

Keeping a diary of what you’ve noticed day to day could also be useful for the future.

Others may have ideas about how you can help your grandparents so, now that you’ve found us, keep in touch.
 

Lynmax

Registered User
Nov 1, 2016
760
0
When writing to their GP, it is better to be as brief as possible and not too emotional. I wrote about our concerns and observations about mum to her GP in the format of a bullet point list. I know how busy they are and did not want to overwhelm him with a long rambling letter. He later said how helpful it had been and very easy to understand.
 

Jessbow

Registered User
Mar 1, 2013
3,522
0
West Hertfordshire
The other side to it is, they are the ''for better or for worse'' generation.

Whilst you Grandad is there with her and in good health, what difference will formlly diagnosing her make? Very little difference can be made by medication, so while Grandad is happy supporting her, truly, you may have to leave it as that.

I am sure Grandad knows she isn't the woman she was
 

Belle185

New member
Apr 27, 2021
5
0
Welcome to Dementia Talking Point @Belle185

It’s quite common for people to react like your grandparents and play down the difficulties they’re having. I think a letter to their GP about your concerns is a good idea and it’s something that other people have had to do. It might be a good idea to let the GP know your grandparents don’t know you’re writing so they can be discreet if they contact your grandparents. It is possible that the tests were cancelled because of the covid situation but I think I’d let the GP know about it. My dad’s GP would’ve wanted to know why the tests were cancelled and re-ordered them.

The GP won’t be able to tell you anything without your grandparents permission but you can let them know what’s been happening.

Keeping a diary of what you’ve noticed day to day could also be useful for the future.

Others may have ideas about how you can help your grandparents so, now that you’ve found us, keep in touch.
Thank you for your reply, I really appreciate your advice.
 

Belle185

New member
Apr 27, 2021
5
0
When writing to their GP, it is better to be as brief as possible and not too emotional. I wrote about our concerns and observations about mum to her GP in the format of a bullet point list. I know how busy they are and did not want to overwhelm him with a long rambling letter. He later said how helpful it had been and very easy to understand.
Thanks for the advice, I really appreciate it.
 

Belle185

New member
Apr 27, 2021
5
0
The other side to it is, they are the ''for better or for worse'' generation.

Whilst you Grandad is there with her and in good health, what difference will formlly diagnosing her make? Very little difference can be made by medication, so while Grandad is happy supporting her, truly, you may have to leave it as that.

I am sure Grandad knows she isn't the woman she was
Thank you for this, it's something I hadn't really considered. But I think you're quite right. Perhaps (rather selfishly) a formal diagnosis was something I wanted to help me accept her prognosis. When in actual fact it may not be of much benefit to my Grandparents. Thank you for taking the time to reply, I really appreciate it.
 

Evergreen50

Registered User
Apr 25, 2021
13
0
Hi, I could really do with some advice about my nan. She is in her early 70's and I believe has been suffering with undiagnosed alzheimers for the last 5-6 years. She lives with my Grandad who is in his 80's but in very good health. Unfortunately my Grandad seems to be in complete denial about her symptoms. I saw them for the first time since Christmas this weekend and was shocked by her appearance and demeanour. My grandad has taken her to the Drs at various points over the course of the last few years. But it seems until recently they had a pretty useless GP. Thankfully that GP has just retired and they saw a new one at the end of last year, who ordered a myriad of tests, MRI's etc. When I spoke to my Grandad about this he said that the hospital called and told him that they didn't think she needed the tests. I don't think he would lie about this but I think that as it was during the last COVID peak the hospital were probably clearing the decks of anything but priority patients. Anyway I guess what I'm interested in hearing is if there is anything I can do. I don't want to jeopardise my relationship with my grandad and I have tried speaking to him about her health on many occasion's already (there is always another reason in his mind). I was considering writing a letter directly to their GP to express my concerns. Not sure if that would be a good idea or not. I just so desperately want her to get the help she deserves before she completely deteriorates . Thanks for reading.
Hello Belle, unless you feel there is a real risk of safety or there is a need for financial support to be obtained I would praise Grandad. He is doing a good job. There is a Youtube video by a lady called Diana Waugh in Ohio. It is called 'How to communicate with someone with dementia.' This lady has a nice Carers handbook on Amazon at £11.50. " I was thinking " it has pages to take notes. Might be worth getting and make notes after you have visited. You may think of a supportive way to keep these 2 love birds safe.
 

Evergreen50

Registered User
Apr 25, 2021
13
0
Hello Belle, unless you feel there is a real risk of safety or there is a need for financial support to be obtained I would praise Grandad. He is doing a good job. There is a Youtube video by a lady called Diana Waugh in Ohio. It is called 'How to communicate with someone with dementia.' This lady has a nice Carers handbook on Amazon at £11.50. " I was thinking " it has pages to take notes. Might be worth getting and make notes after you have visited. You may think of a supportive way to keep these 2 love birds safe.
 

Evergreen50

Registered User
Apr 25, 2021
13
0
This is a lively Youtube video by a lady called Teepa Snow/Brain Talks/Being Patient.
You can see what I get up to when hubby is in bed and I am on my own from 5.30 pm
.https://youtu.be/u5QMeQpkPhA
 

Adoralan

Registered User
Mar 2, 2021
50
0
Hi @Belle185 , all I have to add to the conversation so far is to say that the benefit of having a formal diagnosis comes when dealing with medical staff or other authorities. My mum was hospitalised with Covid recently and although the hospital staff agreed that she had dementia (and asked me to complete an Alzheimers Society "This is Me" form) the fact that multiple different staff saw her meant that this wasn't always recognised and she was frequently asked to make decisions about things such as medication or treatment that she didn't have the capacity to make. This was despite the fact that I have Power of Attorney for my mum's health and welfare and had made this clear to the hospital at the outset. Without a formal diagnosis it can be quite difficult to get people who only see the person briefly to understand or accept their lack of mental capacity. This is why my sister and I are now pursuing a diagnosis for my mum. Does someone (your Grandad?) have power of attorney for your nan? It would be worth thinking about finance and health if she still has mental capacity to consent as it might save difficulties in the future. Very best wishes.