Probably discussed loads of times..

Bay21

Registered User
Jul 31, 2013
43
0
But does anyone feel like when you bring up a loved one or relative with Dementia, no-one really cares...
 

nae sporran

Registered User
Oct 29, 2014
9,213
0
Bristol
Sorry it's getting you down and you are left feeling isolated, Bay21. I don't think, just from experience of chatting to walking group friends and to family, that people don't care. It's just that they don't know what we are going through and can't fully appreciate what we are saying. Are there any carers groups or memory cafes in your area ? http://carers.org will find you something I hope.
 

nae sporran

Registered User
Oct 29, 2014
9,213
0
Bristol
That is a lot to deal with and you are bound to be isolated, Bay21. I hear walking friends make plans to get together on other days and have to decline, so know some of how you feel . Have you asked Social Services to help with day centres or respite for your dad to give you more time to yourself and for your children?
 

jmg156

New member
Nov 28, 2019
9
0
My dad (83) has a diagnosis of dementia although a few people (including myself) aren't convinced. Over eight years he's only got slightly more forgetful but usually remembers things later. He can still do everything for himself too

However my mum (who's 36 years younger than my dad) cared for my granddad who had Alzheimers for a short while so at least I have her to turn to for advice in the future if necessary. My parents haven't been together for about 23 years but I think it's sad she's offered me more support than my dad's other children ever have

Thankfully I'm alright at the moment though. The only time it becomes a bit of a struggle is when he's ill which is thankfully not very often at all

I hope you can get the support you need though. My mum and auntie said it was really hard and I don't know how they managed in all honesty
 

RosettaT

Registered User
Sep 9, 2018
866
0
Mid Lincs
I have a friend whoes husband had an operation a couple of weeks ago, speaking with her the day she said she was fed up of having to do everything for him. She even had to tie his shoe laces, so roll the day when he can do it himself again. I just looked at her and said, tell me about it! She then clocked how insensitive she sounded. She didn't mean it just she wasn't thinking.
Likewise we saw some old friends a month or so ago and I explained how our lives had changed because of OHs diagnosis, she sympathised, then today I get a Christmas card from her saying how busy they are but she still makes sure she gets her cruises every 3-4 months, and I just thought how why not just wish us a merry christmas, it really brought home to me how people just don't understand even tho' they say they do.
 

Guzelle

Registered User
Aug 27, 2016
426
0
Sheffield
I don’t think people have any idea if they haven’t been through it. The needs of a PWD take all of our time and our own life stops. The demands on the carer are more than anyone can imagine.
 

Lawson58

Registered User
Aug 1, 2014
4,333
0
Victoria, Australia
My dad (83) has a diagnosis of dementia although a few people (including myself) aren't convinced. Over eight years he's only got slightly more forgetful but usually remembers things later. He can still do everything for himself too

However my mum (who's 36 years younger than my dad) cared for my granddad who had Alzheimers for a short while so at least I have her to turn to for advice in the future if necessary. My parents haven't been together for about 23 years but I think it's sad she's offered me more support than my dad's other children ever have

Thankfully I'm alright at the moment though. The only time it becomes a bit of a struggle is when he's ill which is thankfully not very often at all

I hope you can get the support you need though. My mum and auntie said it was really hard and I don't know how they managed in all honesty
I think because your dad doesn't exhibit the usual signs of dementia and because he is deteriorating slowly, then it is harder to accept the dementia diagnosis.

My husband was diagnosed over five years ago with 'atypical' Alzheimers which meant that he didn't fit the usual pattern of the disease. Then it was 'frontovariant ' Alzheimer's but he didn't really fit in there either. The neuropsychologist says he has 'nonamnesiac' Alzheimer's but the geriatrician says he has a 'non classical ' form of the disease.

So OH doesn't behave like other dementia patients. His long term memory is shot and he can't recall much of the first thirty years of his life. His short memory can be a bit fuzzy at times and he can't use a mobile phone, drive a car, do online banking etc. However, he is still continent, showers without help every day and can still prepare simple meals. He still plays bridge several times a week.

Please don't be too hasty in denying your dad's diagnosis. There are many, many forms of dementia and research is still discovering more. I am pleased that your mum is so supportive.
 

jmg156

New member
Nov 28, 2019
9
0
I think because your dad doesn't exhibit the usual signs of dementia and because he is deteriorating slowly, then it is harder to accept the dementia diagnosis.

My husband was diagnosed over five years ago with 'atypical' Alzheimers which meant that he didn't fit the usual pattern of the disease. Then it was 'frontovariant ' Alzheimer's but he didn't really fit in there either. The neuropsychologist says he has 'nonamnesiac' Alzheimer's but the geriatrician says he has a 'non classical ' form of the disease.

So OH doesn't behave like other dementia patients. His long term memory is shot and he can't recall much of the first thirty years of his life. His short memory can be a bit fuzzy at times and he can't use a mobile phone, drive a car, do online banking etc. However, he is still continent, showers without help every day and can still prepare simple meals. He still plays bridge several times a week.

Please don't be too hasty in denying your dad's diagnosis. There are many, many forms of dementia and research is still discovering more. I am pleased that your mum is so supportive.

When my dad told me he'd been diagnosed with mixed dementia I was devastated

But what's made me start to think he was possibly misdiagnosed is he's always acknowledged he's forgetful and it's usually things like what he's eaten during the day, birthdays or occasionally names (our family is very large) - all things he'll remember if he's given a clue or a reminder. He's also still capable of recalling things that happened 70+ years ago very accurately

He knows who his family/friends are (even though he hasn't seen most of his family in years) and can easily recall things like his date of birth, our address and telephone number without any difficulty. I've been living with him for nearly five years now and at the moment I don't think he's showing any of the other symptoms of early stage dementia which I've researched. He has been housebound for a while (he had to stop driving due to his diabetes) so I have considered he may possibly have depression

But of course I am prepared for the fact he may have dementia and it's just taking a very long time - to be honest what I think I'm doing is trying to put the diagnosis to one side because he's only slightly forgetful at the moment. If he gets worse then he does know I'm here to support him for as long as I possibly can. My partner is really supportive too even though we haven't been together for very long

I'm really sorry to hear about your husband's diagnosis. Do you have any support from your family/friends?

I do really appreciate your kind words though. They have helped :)
 

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