Hello , I am a new member and care for my husband who has vascular dementia

[Georgina N]

Hello, I'm new to this and have never posted a message before. My husband ,who is much older than me, has vascular dementia and I am his sole carer.

This year, his health has got progressively worse; he hates being on his own in a room, even if I am only in the next room he has to search me out constantly, this is very wearing.

He goes to a day centre twice a week ,this helps , but I can't help feeling so alone and isolated. Before the illness, he was a very intelligent person , and I feel that I am grieving for this person, even though he is still here in body.

It is almost as if he has already died and I have such a complex mix of emotions about all this which are very difficult to explain.

I just need to connect with other people who are in a similar situation , as I don't know anyone else who would understand.

 

[bclark]

welcome

hi georgina, so glad you have found TP, you are not alone we all are here to listen and give advice when needed, i noticed you mentioned many words such as isolated, alone, grieving mixed emotions, we can all relate to this, my husband who has progressed a lot lately who i now feel does not know the life we had, and looks at me quite confused, i knew this would happen but its another road i will go down reluctantly, try to meet each day as it comes with its challenges, the person you married is still there seek help from all support services all the best bclark

 

[connie]

Dear Georgina, very warm welcome to TP.

and I feel that I am grieving for this person, even though he is still here in body.

It is almost as if he has already died and I have such a complex mix of emotions about all this which are very difficult to explain.

Your words, which I have quoted above, will strike a cord in many of our members. Never be afraid to show your emotions or voice your fears, many of us are experiencing similar.

I do hope that now you have found us you will not feel so alone.

 

[Grannie G]

Hello Georgina

Welcome to talking Point [TP]

My husband is showing very slow deterioration and we live with his confusion and his sundowning from day to day and from hour to hour.

Day care has been tried for him but has failed, so we spend our lives as best we can. And now winter is upon us we will be more isolated than ever.

I hope your feelings of loneliness and isolation will decrease as you become more familiar with those of us who depend on TP for contact with others in similar positions .

 

[ChrisH]

Hi Georgina

Welcome to TP.

I'm in a somewhat different position to you as it's my mum who has vascular dementia and Alzheimers and I only see her once a month as I live 200 miles away, have a family and business to run.

I can relate to some of the things you say though, especially the bit about feeling it's like your husband has already died. My mum's personality has changed so much in the last year that it's like visiting a completely different person. She gets irritated and annoyed with her friends as well as me if anyone implies she's done something wrong. She used to be so calm and cheerful. I'm lucky that she has great support from her friends and social services, but it's not the same as being there myself.

Have you contacted your local Alzheimer's Soc. group? I'm sure they would be able to help you connect with others in a similar situation in your area. That way you won't feel so alone. What do you do on the 2 days when he goes to the day centre? I hope you are able to get out and make the most of that 'you' time. Do you have family or friends who can support you? Sorry for all the questions but it helps us to get to know you a bit so we can make some suggestions. I'm sure loads of other people will be along to give you support.

Chris

 

[Skye]

It is almost as if he has already died and I have such a complex mix of emotions about all this which are very difficult to explain.

I just need to connect with other people who are in a similar situation , as I don't know anyone else who would understand.

Dear Georgina, welcome to TP.

I too care for my husband, though he is now in an EMI care home. I relate so much to your feelings, it's a long, long grieving process, caring for someone with dementia.

I hope you'll find the forum supportive, and soon feel less alone. It is a lifeline for so many of us.

Love,

 

[lesmisralbles]

Dear Georgina

I just need to connect with other people who are in a similar situation , as I don't know anyone else who would understand.

Georgina
My husband is 23 years older than me.
So, I think I understand

Keep posting.
Lots of very kind and wise people on this site. (I should know). They have always been there for us.
Barb & Ron XXX

 

[BeckyJan]

almost as if he has already died and I have such a complex mix of emotions

I totally understand - I can only agree with what others have said.

My husband is 11 yrs. older than me but he is deteriorating very very quickly now. It is hard.

Keep posting and please start a thread if there are any special worries.

Love Jan

 

[Margarita]

he hates being on his own in a room, even if I am only in the next room he has to search me out constantly, this is very wearing.

I can really connect to that, as when my mother through that stage I felt really frustrated even thought my mother back then went to day centre 2 days a week and even thought I understood that my mother was becoming very insecure scared when she never saw me around her , it never help me even knowing, that only as time move on mum mobility got worse mum does not follow me around anymore , but I still have to tell her what room I am while reassuring her I am in the same house as her she OK in the room without me . May be its because mum has VD rather than AZ , that mum can still retain what I tell her in reassuring her that I am in the house that she does not forget what I tell her , as 6 years ago mum was told she had AZ then this year they tell me that mum has VD.

I feel that I am grieving for this person, even though he is still here in body.

I know what you mean , I miss mum being mum going shopping with me sharing Christmas shopping with me , Saturdays at the market together load of other stuff we did together . Now Mum won’t even get in to a wheelchair so I can take her out , because mum got some irrational fear of the wheelchair , yes this brain damage sure is heartbreaking, with me as it all progressed thinking of the good time together we shared help me cope with the hear now .

 

[bubble26]

Your husband

Dear Georgina, I am also new to this and just wanted to say to you that I am thinking of you and hope you do get some positive help. Best wishes D

 

[mum of two]

Hi Georgina,
My mum who's 67 has got vascular dementia. She can't walk very well & needs alot of help . She struggles to get out of a car & a chair. She has no concept of money & is very vauge sometimes.
My dad is her carer he's71 & has bowel & prostrate caner which can't be opperated on as his heart is weak.
It really must be hard for you to cope with it each day. When my Mum comes over from time to time or I go & see her I find it hard to see what she is like.
Take care I'm sure that you are doing a great job.
Mum of two

 

[May]

Hi Georgina, Welcome to TP.

but I can't help feeling so alone and isolated

You're not alone any longer, TP is a place to find understanding, a place to vent feelings, somewhere to come for advice, and 'virtual' friendship from people who are travelling the same road.
Take care and do come back and post.

 

[Georgina N]

Thank you everyone

I just wanted to say THANKS to everyone for replying so quickly to my message - it really has made a difference to how I feel.
Ijust wish that I had discovered this forum earlier when I was struggling on my own. I realise now that I should have had medical,
social services etc etc more than a year ago- but since I have never experienced dementia at close quarters before I suppose I was
unsure, just thought it was memory loss due to old age. If only!!


It means so much that there are all of you out there who really understand, and if I can help someone else I will be very glad.

Lots of love

Georgina xx

 

[Grannie G]

Hello Georgina

It does help doesn`t it, to know there are people here who do understand.
However sympathetic others on the `outside world` are they will never know.
I hope they never do.
Love xx

 

[sunray]

lots of us have similar problems

Hi Georgina

My husband Ray has vascuar dementia too. I have been his carer since 1999 because he had a couple of major strokes then but although he wasn't able bodied from then on he didn't get Vascular Dementia until the fifth stroke in 2005.

Like you I really miss his old personality, his intelligence, his wit, the stories and jokes he used to tell. I lost a handyman as well as a loving husband. I hate being a "nurse" now more than a wife as I have to do so much for him. He has developed a lot of extra deficits and needs my help to do so many small tasks all day long.

It is as if you lose the beloved and familiar spouse and instead care for a slightly irritable stranger. Or that is the way I see it some days.

Sue.

 

[Georgina N]

sounds very familiar

This sounds very familiar to me! Yes I have lost my 'handyman' too ,now
have to pay someone else to do things which D used to do.
Feel as if I am the single parent of an elderly child really.
He doesn't realise that he is at home [where we've lived for 16 years], and keeps wanting to 'go home' to his parents, where he lived more than 60 years ago.
Take care,
Love Georgina x

 

[mum of two]

My Mum's like that

Hi Georgina,
I feel as though I have lost my Mum & sometimes forget what she is unable to do. She often says that she has got to go home. She thinks that her husband is her Dad sometimes, he's been dead 30 plus years. She should be able to things with her grandchildren. I know they try & make the most of her when they see her . It is so hard for my Dad . I think heis way of coping is to do as much as he can for her, then he doesn't have to think about his problems.
Bye for now
Mum of two