• 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.

End of Life Care

BeckiC662

New member
Feb 19, 2019
5
Hello, so here is a little background, my name is Rebecca and my best friend is called Dennis, Dennis is also my grandad. Me and Dennis have been inseparable since I was born 24 years ago. At the age of 78 Dennis was diagnosed with Alzheimer's and then at the age of 80 along came the vascular dementia. He was always such a strong independent man. Loved going to car boots and just going out in general. Since January 2019 things have got rapidly worse. We are now in August 2019 and Dennis is now on end of life care at the grand old age 83. Now I am really scared to lose my best friend but I am trying so hard to be strong for him. I go to work everyday and as soon as I finish I go straight to him, he no longer knows why he is in the house he lives in and has lived in for over 50 years, he doesn't recognise his children or his wife. As soon as I walk in his face lights up, I feel bad because everyone else around is really sad because he doesn't remember them but he always seems to remember me. Now I have always been the one to be there first if he needed anything I was always the one spending all my spare time there yet people are getting upset/annoyed with me because he still remembers who I am. I dread the day he leaves us but the man he is today is not the man we all know.

Sorry for the long thread I just felt like I needed to talk and this was my way of doing it.
 

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karaokePete

Registered User
Jul 23, 2017
5,117
N Ireland
Hello @BeckiC662 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. If you are interested in this, clicking the following link will take you there

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

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

BeckiC662

New member
Feb 19, 2019
5
Thankyou, I have been on here a while but I'm more the person to sit back and read rather than post but a lately I need to speak to someone but I don't feel comfortable talking to my friends or family and I feel like this is a safe place.

Thankyou for the link that will make some great help for me
 

Grannie G

Volunteer Moderator
Apr 3, 2006
70,399
Kent
I’m glad you feel Dementia Talking Point is a safe place for you @BeckiC662 because it really is.

I hope now you have started to post you will continue. It`s a great help to be able to offload here where we all undersrand how you feel.

There were many times when my husband didn’t know me but he always knew our son.
 

BeckiC662

New member
Feb 19, 2019
5
Hello @Grannie G, I talk to my friends about how I'm feeling and how grandad is doing but its nice to talk to people that understand what I'm going through.

I will be posting a lot from now on.... I feel like its going to help me as I struggle with mental illnesses myself, so I need to look after myself as well as grandad so writing on here will help.

How do you deal with it when your husband doesn't know who you are? have you found any easy ways to deal with it as I find that my nan is trying to remind him who she is and it just makes him frustrated..... feel like I need advise.
 

pipd

Registered User
Apr 12, 2015
78
Leigh on Sea Essex
Hi, my mum had Alzheimers and vascular dementia, she passed away in January 2018 but I still pop by to this forum every now and then to just read others posts and, if I can, to post some of my experiences if I feel they may help others. My greatest bit of advice with anyone suffering dementia is to just join them in their world and NOT try to argue with or correct them or try to make them remember people or things that they have forgotten. There's no point, it just upsets everyone involved. There is no reasoning with someone who has dementia, what they believe to be true in their mind IS true. Just try to have a different mindset and go with it, it causes a lot less upset and stress in the long run. Keeping someone with dementia calm and happy is always the best thing.
 

BeckiC662

New member
Feb 19, 2019
5
Hello @pipd - I love that "just join them in their world", my grandad is going through a thing at the minute where he loves to dance, back in his prime him and my nan was always out dancing and to see him dancing whilst sat on the sofa just makes me think maybe hes remembering the old times of taking nanan out. When I see him doing this I put on his CD player and jig with him.
 

Grannie G

Volunteer Moderator
Apr 3, 2006
70,399
Kent
Hello @Grannie G,

How did I deal with my husband not knowing me? Not very well I’m afraid.

I didn’t insist who I was. I learnt quickly it made no difference.

It’s a while back now but I think after everything else failed I just accepted it and hoped he would know me again. In time he did know who I was but had lost the concept of me as a wife Instead he saw me as someone who was good for him and when he was in residential care always greeted me with a smile and was pleased to see me. I never asked him who he thought I was.
 

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