• Expert Q&A: Rare dementias - Tues 3 March, 3-4pm

    Our next expert Q&A will be on the topic of rare dementias. It will be hosted by Nikki and Seb from Rare Dementia Support. If you have any questions about rare dementias, they will be here to answer them on Tuesday 3 March between 3-4pm.

    You can either post your question >here< or email them to us at talkingpoint@alzheimers.org.uk and we'll be happy to ask them on your behalf.

I Love This Forum But...

Soroptimist

Registered User
Jun 10, 2018
54
Just to say that my main frustration with this disease has always been the lack of support from GPs, charities and social services. The people on this forum know way more about how to communicate with a person with anosognosia, (lack of insight) than the professionals.

For me personally, the disease allowed me to get closer to my mum than I was before, and I feel my care of her was the most important job of my life. So although there is lots of horrible stuff, there is some good stuff too.
 

Thethirdmrsc

Registered User
Apr 4, 2018
112
Just to say that my main frustration with this disease has always been the lack of support from GPs, charities and social services. The people on this forum know way more about how to communicate with a person with anosognosia, (lack of insight) than the professionals.

For me personally, the disease allowed me to get closer to my mum than I was before, and I feel my care of her was the most important job of my life. So although there is lots of horrible stuff, there is some good stuff too.
You are so right. Even some family members, it’s out of sight, out of mind. Every single one of my days involves tears, sometimes both of us, low lows, and wee highs, and the highs are only when he is happy and settled. And no one really bothers their backsides.
 

mollymoo2

Registered User
Feb 8, 2019
11
I have Alzheimer's.

I'm on the slippery slope, but still "compos mentis" enough to participate in forum discussion.
One thing that disturbs me though, is reading the harrowing accounts of carers that pepper this forum and make me despair about the trouble I may be further down the road on my journey into dementia.

Is there any way to seperate the practical advice and discussion amongst sufferers from similar discussions amongst carers?

Sometimes, I am quite distressed by the things that I read, as I do not want to be a burden on anyone :(
You are but a burden! I looked after my Aunty for 3 years with the help of carers as I work full time. Was it tough and challenging yes most of the time, would I do it again yes I wouldn’t hesitate.
Please keep posting my Mum now has Alzheimer’s and has deteriorated quickly but everyone is different and I for one have found this forum very comforting at times as you realise your not alone take care
 

DesperateofDevon

Registered User
Jul 7, 2019
2,580
I think it’s easy to forget that most people post on this forum when at their wits end, desperate for help.
Lots of peoples positive experiences are not discussed here. Because they are positive experiences.

A diagnosis of dementia doesn’t mean the negative emotions, this is a personal journey with different personalities involved.
 

Agzy

Registered User
Nov 16, 2016
1,020
Moreton, Wirral. UK.
Until the onset of Alz my OH and I camped all over UK and EU in our caravan but she just went off the idea totally but still urges me to carry on whilst she is still, more or less, able to look after herself, and this I have done. Two of my kids visit and contact her when I am a way but only one of her sons and that only briefly and all three say cannot/will not give dedicated time to it. When asked what would they do if anything happened to me and blank looks and shrugs are best I can get. Family love hey!
 

BothParents

Registered User
Apr 18, 2018
43
It's TRUE Arthur that some of what you read does not happen to everyone. My parents both had alzheimer's and vascular dementia respectively. They have both passed away now, my mother just in the last few days. They were each affected very differently.
Over the years (long, long before the onset of their illnesses) I did have some issues with them bit worked on the issues myself to resolve them.
I had no idea at that point what yet future would bring.
What I am sure of is that having spent nearly 4 years making sure both my parents were well looked after and always safe, they were never a burden to me. Far from it.
My partner and I developed different relationships with them and in so doing we shared a great deal together and I had a better relationship in many respects with both my parents than if they had not been ill.
Furthermore I would willingly do it all again. Every bit of it.
I really do wish you well x