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Where are we?


Registered User
Jun 11, 2018
We are almost 3 years post diagnosis of FTD revised to probable Alzheimer’s ( whatever that means!). Up til now we have lived with and managed this life without outside help, although we have used a few resources from the Alzheimer’s support, my partner has a support worker and we attended a monthly memory cafe. He is not a joiner and has no friends who visit so, unless I take him out, he stays at home, glued to his iPad or asleep. His son lives 11/2 hrs drive away and has a busy family life and career...phones every fortnight and visit 2/3 times a year. Ho hum!
I am trying to maintain a life of my own but this results in feeling guilty, although I can always relax when I’m with friends...until I return home to find him in the same place looking lost.
I can see that my situation is easy compared to most of the carers on this site. I can leave him for 2/3 hours and he has no interest in what I do....but he is convinced that he pays me to cook, clean, garden and shop so his attitude to me is very demeaning and rude. This from a partner of 10 years who was my sanity during a very difficult time in my life and on whom I learnt to feel secure.
Now I don’t know who I am or what I’m supposed to be. Living with dementia for both of us is like wading in mud, one foot out and the other foot in, thank goodness he sleeps well or else it would be a lot harder.
I know better than to argue with him about our relationship but try to reassure him that he is safe and cared for and will always be looked after by me. He then looks at me as though I am talking nonsense!
So I suppose I came on here because I felt sad and sorry for myself...although, reading this through, I know I can go on coping but worry about the effect it’s having on my sense of self, I used to be full of optimism and look forward to new things but now each day feels the same. Thanks for reading, it’s good to write it down.


Registered User
Apr 30, 2019
South East
I’m glad that you came on and posted and hope you feel a little better for getting it down . I struggle with the feeling of being an unpaid slave , no please or thank you so, I usually say it to myself in my head , whilst trying to remind myself it’s the horrid disease as my lovely mum was very thoughtful , caring and kind pre dementia . Doing it all alone sounds hard , I have just started a carer twice a week just for 2 hrs a time and also day cents twice a week , it’s a godsend . Is it worth a try at the clubs ? Everyone said I wouldn’t get mum there , mum before wouldn’t of but now she really enjoys it , we went on a taster session first . Plus I sold it in a way I thought she would accept , telling her they needed her help to look after the poorly older people , plus I was overly happy and jolly when asking and taking her and that rubbed off on her . Glad you do still get out and have a little bit of your own time /space , so important if you can . Take care .


Volunteer Moderator
Aug 31, 2003
I’m sorry things are bad for you @Florencefennel. I hope it has helped, even just a little, to share here. There’s always someone here to listen and understand.