To partners of people with dementia: Do you think of yourselves as "carers"?

[CraigC]

Firstly, good luck with your research.
My dad is in care and like others here I still primarly think of him as my dad and myself as his son.

However, there are certainly things that I do for dad that I consider as part of my carer role. Particularly day-to-day stuff that we did when dad was at home with mum. Taking your father to the toilet and helping clear up after, changes a lot of father/son relationship dynamics, I can't pretend any differently.

Mum struggled with the role of carer vs wife, her rock became a man who needed looking after every moment of every day. And the hardest thing for mum was losing her soul mate, the one person you talk to about everything, all you problems, all you worries and all the good things that happened in you day, the person that gives you a hug everyday. She just had to get on with it, but an emotional struggle for her.

What is the role of Talking Point in your everyday lives?

For me it is an outlet that I do not get anywhere else. After a while people in my daily life just didn't want to hear about the 'problems' with dad; here people like to talk and like to help and (metaphorically) look you in the eye when you start talking about your dad.

Kind Regards
Craig

 

[Skye]

What is the role of Talking Point in your everyday lives?
And on a related note, do friends and family understand the transitions you are going through?

TP was for a long time my main contact with the outside world. My husband has PPA, which means that conversation became limited, and gradually, impossible. Empathy also went, though there has always been love between us.

I used to spend an incredible amount of time here when John was at home with me. I bought a laptop so that I could still be with him, but be 'talking' to people on the forum.

Friends and family didn't really understand how difficult it was. John was physically very fit, and always smartly dressed. No-one would have guessed that there was anything wrong with him -- until they asked him a question.

No-one could see the utter loneliness of my life. TP was a lifesaver.

Now, I'm here because I have many friends on the forum, and I try to help where my experience may be useful.

 

[Helen33]

I have just had an eye-opener from Winnie's experience which I realise is true for me too. All family and friends saw me as Alan's wife but the professionals and care industry saw me as a carer. If I remember correctly, I had to learn new terminologies in order to gain the support that was needed and it meant a big emphasis on the role of carer rather than wife.

Talking point has been a lifeline to me. My husband and I were abandoned by the system and I knew nothing about FTD which my husband had. Talking Point provided me with support, information and empowerment to change our situation and, I believe, heavily contributed towards us being able to gain tremendous support. I know that my husband indirectly benefitted from all the support that TP offered me although he never understood what it was all about. Through TP I learned that Alan couldn't change himself because of the illness and so I learned to continually change myself in order to better deal with the situations. In some instances when I was ill or over-stressed I did not manage very well at all and these times were a real worry to me. I knew that the best that my husband could get was that I was alright and so I had a duty to myself as well to make sure that my needs were met in order to better care for him. Fortunately, the services in my area, seemed bountiful which is not the case for many and is not the case in our area any more due to cut backs

 

[Grannie G]

And this is what TP is about.
How many of us are sitting in dressing gowns with the first teas and coffees of the morning, chatting to `Friends` before we are ready to face the day.

 

[BeckyJan]

I am a wife and having a husband with dementia I see the role much as I do as a Mother, but now in reverse.

With babies I was their mother but also a vital carer. As the children grew I could let go the reigns a little, and in adulthood I gave my children independence and love, but I am still their mother.

For my husband the reverse has happened. In early days we loved, cared but also had independence. As dementia took over then my role as a wife meant I became a vital carer just as I was for our children.

My husband is now in a nursing home, I am still primarily his wife - I still care and will remain a carer albeit from the outside now.

I originally came to TP to gain knowledge about an illness I knew nothing about. It was invaluable. Along the way I have enjoyed the companionship, care and friendship of other members - returning home to an empty house is easier with TP.

 

[sunray]

Marie, I was given a few websites to look at at a course I did last year for carers. The course was designed to help us identify our needs and where to get help. The trainer said she found a lot of support here at Talking Point when she was dealing with her mother's dementia.

I already belonged to Strokenet which I joined in May 2005 when Ray was in hospital with his last stroke. I was desperate to find answers , like why did he continue to have strokes when he was "supposedly" on the right medication? As well as information I found friendship and support. I am still a caregiver chat host there.

Then last year I could see that the dementia was becoming the major problem I was dealing with, not the strokes so it seemed sensible to join a couple of dementia sites and seek help and information there.

I have read so much on this site and have tremendous admiration for the way carers cope under very difficult conditions. It certainly helps to know so many people are dealing with dementia and not folding or running away. And that somehow we can cope and still retain a sense of humour and a sense of self.

Like many our friendship base dropped away and although our children are still in touch Ray's siblings and most of the rest of the family have not contacted in a long time. I guess they were afraid that somehow it was "catching" or that we would ask them for help. Sure wish you could give people "coping lessons" or make them express the "love" they put on the bottom of the Christmas card in a practical way!

 

[PostTenebrasLux]

... "Like many our friendship base dropped away and although our children are still in touch Ray's siblings and most of the rest of the family have not contacted in a long time. I guess they were afraid that somehow it was "catching" or that we would ask them for help. Sure wish you could give people "coping lessons" or make them express the "love" they put on the bottom of the Christmas card in a practical way!

So well put - spot on, especially that Christmas card message!
M

 

[nadul2001]

Hello again,

Thanks for all your responses; I am impressed and very grateful that you take the time to reply, when you have so much to do. Several of you have mentioned that there may be differences between how you and your family see you, and what professionals treat you as. Do you think there is an expectation from wider society that if you are a couple and the other develops dementia, you almost by definition become a carer as soon as they are diagnosed?

It makes me wonder what happens with people who do not have support from others from a place like Talking Point :-(.

 

[Bookworm]

Mum struggled with the role of carer vs wife, her rock became a man who needed looking after every moment of every day. And the hardest thing for mum was losing her soul mate, the one person you talk to about everything, all you problems, all you worries and all the good things that happened in you day, the person that gives you a hug everyday. She just had to get on with it, but an emotional struggle for her.

Thanks for this Craig - I think I had forgotten that I ever had a rock or soul mate - but you are right - I did once. I hope the thread originator sees this as relevant comment about hos the role of carer takes over.

Just wanted to say also that I found Helen's post very moving, xx

 

[Brucie]

My husband has had dementia for ten years, and has been in a care home for the last two. I normally visit every day and feed him.

He is still my husband, I love him dearly, and have never considered myself as his 'carer'. I am his wife. I promised to love and cherish him, and I do. It grieves me that he is not at home with me, but I have to accept that he is a sick man, who needs professional care.

Hazel writes succinctly and apart from the gender difference, and the fact that my Jan has had dementia for 18 years, and has been in a care home for 9 years, I wouldn't need to write any more.

 

[Bronwen]

I hope all previous letters will help you with your research. I can confirm I am sat in my dressing gown reading letters as having had a very bad night with my husband's dementia I havent the motivation to start my day.

We have been married 51 years and I love him dearly but I have to say I find myself thinking of myself as a carer more than a wife now...probably because I have to do everything for him now and my biggest unhappiness is that we don't share things like laughs at tv programmes, ideas about the garden or decorating etc...we seem to be leading two separate lives and I miss him.

My mother had alzheimers in her mid 80's and when she was 89 we had to put her in a nursing home as my dad (also 89) couldn't cope, but we found a lovely home within ten minutes of his flat and my sister and I took it in turns to take him in to visit or he had a taxi..but the one thing that always upset him was that my mum never asked him how he was coping and this hurt my dad so much and I regret to say I couldn't understand why..I thought my mum had the problem with alzheimers but failed to realise how much dad missed my mum's love and concern...NOW I understand so well and wish I could tell dad but they have both passed on now.

love
Bronwen

 

[Skye]

Do you think there is an expectation from wider society that if you are a couple and the other develops dementia, you almost by definition become a carer as soon as they are diagnosed?

I'd make a clear distinction here. As far as my friends are concerned, I'm John's wife. Our GP also has always treated me as his wife.

Once you get beyond this level though, I think I'm a 'carer'. I think this is largely because all committees, panels, etc, now have to have input from a 'user' and a 'carer'. If it's to do with dementia, I'm usually the 'carer' in our area. I have to put aside the 'wife', and represent all carers.

It's thanks to TP that I am able to do this. One committee chairman thanked me for my input, and said how valuable it was to have someone who saw the whole picture, not just their own particular case. I wouldn't be able to do this without the knowledge I've gained from TP.

It makes me wonder what happens with people who do not have support from others from a place like Talking Point :-(.

I know I would have broken down, and John would probably have been in care much earlier than was necessary. I don't know how people manage without TP, let's face it support in the community is inadequate, and is likely to become more so.

 

[nadul2001]

" the one thing that always upset him was that my mum never asked him how he was coping and this hurt my dad so much and I regret to say I couldn't understand why..I thought my mum had the problem with alzheimers but failed to realise how much dad missed my mum's love and concern...NOW I understand so well and wish I could tell dad but they have both passed on now.

love
Bronwen[/QUOTE]"

(Sorry, I haven't quite got the hang of how you quote from someone's post).

I found this post really moving, and I get the feeling it is summing up what a lot of people are going through. Do you think as well as taking on more caring for you husbands and wives, you are also dealing with a kind of emotional, and practical, loss of the spouse and marriage you used to know?

-and do you think how your husbands and wives respond to you influence how you see yourself?

Marie