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

[nadul2001]

Dear all,

My name is Marie Paludan. I am doing an MSc in Social Psychology at the University of Surrey. For my dissertation, I am investigating how the identities of wives, husbands and partners of people with dementia are affected by dementia.

I am interested in how you make sense of your situation and which issues are important to you.

Therefore, I would like to analyse how you talk about issues relevant to you. I would like to start by opening some discussions in this forum.
To begin with, I would like to ask you all whether you think of yourselves as “carers”?


I will then analyse contributions in my report, but will keep everything completely anonymous. I will not use anybody’s “real” usernames. If you make some contributions but decide you do not want to take part in my research, just let me know, and I will not use any of your responses.

If you would like some more information about my research, please feel free to ask. You can contact me at mp00110@surrey.ac.uk.

I have recieved permission from TP to post in here.

Many thanks,
Marie

 

[PostTenebrasLux]

Welcome Marie,

Good luck with your studies and I hope that writing your Paper will be straightforward!

I consider myself a "carer" even though the person I care for is my second cousin. Why carer? Well, because regularly over the last 10 years, but only several times per year, though increasingly in involvement, I am in sole charge for one week at a time in 24/7 care for my totally dependent cousin. Whilst my attention and dedication is total, my commitment only lasts a relatively short time as I am the stop gap. But, we are blood relatives.

Hope my answer helps!
Best of luck,
M

 

[lin1]

Hello and good luck.

Ite been looking after my mum virtually full time for a little over two years. when I 1st took over from my dad I didn't consider myself a carer

now I do,

I think it takes time 2 realise that you are a carer partly because you don't want your relationship 2 change, even though it already has.

Hope that makes sense

 

[nadul2001]

Thanks for your replies; this is really useful.

Would you say that you come to think of yourself as a carer as a gradual process, which is connected with how you see, and want to see, your relationship?

Marie

 

[Helen33]

When I first joined Talking Point I felt I was Alan's wife. I had become a lonely wife due to him being robbed of speech and language and empathy but nevertheless I identified myself as his wife. As the time passed and as I found information and support from TP, I went through a transition from a wife to a carer. It was a very uncomfortable transition. I had never, ever, thought of 'carers' before Alan was diagnosed even though I have a sister with Downs Syndrome who has always needed particular care. I feel it was different because Alan was my husband and not my sister. One of the reasons it felt uncomfortable was because I felt I ought and wanted to care for my husband but I had no idea of the high level of care that would be needed and that the relationship as a wife would be gradually squeezed out by the demands of the illness.

 

[alfjess]

Hi

At first, I thought of myself as a daughter,helping my Mum and Dad, who both had dementia, but as time went on and their needs became more demanding, yes I then began to think of myself as a carer.
Alfjess

 

[Izzy]

I am still very much at the stage where I see myself as a wife, not a carer. I am aware that this may well change as time goes on. Although I am technically my mother's main carer I still see myself as a daughter not a carer. Maybe this is because I have been able to retain my career and work full time.

 

[PostTenebrasLux]

For me the definition of "carer" came as a gradual process. Initially my cousin just needed assistance (dressing, directions, cutting up food etc, trips to the loo) but I became a "carer" when I started on the intimate items such as brushing her teeth, showering her, wiping her bottom and interpreting/soothing her deficient language). My coping mechanism is that I consider that I am entrusted the responsibility (by my cousin) of looking after the person who is in her shoes and has her name but is no longer she, like a promise to look out for her no matter what.

 

[TinaT]

My husband's illness had been coming on for years without my even noticing it. During this time I was his wife but often a very frustrated and upset wife, annoyed by what I thought was his carelessness and ultra dependance on me. He managed to hide his increasing inability to cope with every day tasks. An example of this was how often his car 'broke down' when I now realise that the problem was that he couldn't remember how to drive back home, or the large amounts of change around the house which accumulated. I cursed him often for this not realising that the only way he could pay for anything was by giving a large note as he had lost the ability to do mathematical calculations.

Suddenly he became very ill indeed (almost overnight) and was not capable of taking care of himself at all. Within a year I was very much a carer as his abilities to function normally deteriorated rapidly to the point where he could not be left alone, had to be dressed, washed and helped in all basic daily functions. There were periods during the day or night when he had compulsive behaviour or obsessive thoughts which I could not control or pacify in any way. This was a very upsetting and hard time for me as I just couldn't adjust to such a rapid change.

I cared for all his needs alone for the next four years. During this time I felt isolated and lonely. My children were grown men with lives of their own and lived far away from me and the rest of my family were quite incapable of coping with him to give me any rest from my 24/7 caring responsibilities. If I described his behaviour or the amount of work I had to do for him to the rest of the family I felt disloyal and a bad wife to him. Then I had a carer come in to help me some mornings each week. Although the carer was a very kind person who tried to help, my husband was unhappy, unpleasant and moody if I left the house when the carer came so I stayed and helped the carer instead of using this time for myself.


My husband is now in special dementia residential care and I visit him almost every day. I still see myself as his carer and do some 'hands on caring' when I visit him. He loves to go out in the car and be taken around the shops in his wheelchair which tires me out but gives us both pleasure. When I'm doing this I feel a great sense of 'togetherness' with him.

Our love for each other has not diminished but has changed. He has become the dependant child and I his mother. I feel as protective of him as a mother and I worry about him as a mother would her child.

TinaT

 

[Countryboy]

Hi Marie Re: your question: {{I am investigating how the identities of wives, husbands and partners of people with dementia are affected by dementia.}}
I have dementia FTD and was first diagnosed in 1999 neither me or my Wife considers her as a carer yes as a wife she carries out the usual tasks of cooking washing cloths ect but I take care of all my own personal needs and all the maintenance issues on the home cars ect as we have done for past 44 years

Cheers Tony

 

[nadul2001]

Thanks again for all your responses. I realise I am asking about some very personal issues.

I am realising that the transition from wife/husband/relative to carer is sometimes very painful. I am wondering how you dealt with, or still deal with, difficult emotions?
Also, I am wondering whether thinking of yourself as a carer changes how you cope emotionally with the demands of the situation?
What I mean is, in marriages where neither partner is diagnosed with anything, "society" almost expects people to sometimes be less than happy with their spouse. I am wondering whether it becomes more difficult to have, and accept, feelings of upset and frustration when you start realising you are becoming their carer?

I hope I am not offending with this question; I realise there is a lot of love in many relationships. I am just getting an impression that upsets and frustration may be dealt with differently to before becoming carers. What do you think?

 

[Izzy]

I would say that our relationship has changed in that I am now the most dominant one whereas I would have said we were equal in everything in the past. I have had to get used to dealing with all of the finances, taking all of the decisions regarding our lives, booking holidays .... basically everything. I think this sometimes makes it hard to give Bill his place. I think I am naturally quite bossy eek and have become more so. Bill can still do lots but sometimes my patience is short and because of that he doesn't get the chance to show that he can still do things. I do get more shirty with him than I ever used to and I think that is something to do with being angry with the fact that he has Alzheimer's. I know that it is not rational as it is not his fault but that doesn't matter when I feel that way. As I said earlier I do not consider myself his carer but then he can still look after himself. He does, however, need to be reminded to wash his hair, shave etc and I put out his clothes for him every day. Whilst I know these are elements of 'caring' I still don't feel I am his carer. Sorry this is rambling and it probably hasn't answered your question!! Izzy

 

[Skye]

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.

The only time I refer to myself as 'carer' is when I sit on committees as 'carer representative'. I don't mind that, so long as I'm taken seriously, but as far as John is concerned, I'm his wife.

 

[TinaT]

Upsets and Frustrations before dementia are of course dealt with differently in the pre dementia state. You are equal partners in everything and everything is a shared responsibility, even anger and resentment. No marriage is perfection but in a good marriage the physical help and emotional support you give to each other is the glue which holds you together.

After a certain stage of dementia is reached, you are no longer equal partners as the illness robs the sufferer of both physical and cognitive abilities. The ability to empathise or understand is severely deminished. This, for me, is the hardest thing that the wife/husband has to accept. Life is no longer a shared experience and all responsibilities, great or small, have to be coped with alone. Very often the behaviour of the sufferer is the cause of a great deal of stress and suffering for the carer who has no outlet for the emotions this causes.

This is where Talking Point comes into its own. When the frustration and resentment becomes too much to bear alone, there are always sympathetic listeners here who because they too are coping with this terrible illness, can offer kindness, understanding and an outlet for pent up emotions.

xxTinaT

 

[Skye]

I think the hardest thing to bear (at least it was for me) is the loss of empathy.

I was quite happy to do all that was necessary to make sure John was well and happy, but on occasions when I was feeling ill or upset, John could not understand, could not give me the support I needed.

 

[sunray]

I have been a carer for ten years as my husband Ray had two major strokes in 1999 and I retired to look after him. At that stage I would have said I was Ray's wife and carer. I guess somewhere down the track "wife" dropped off the list and I became Ray's carer. I put down "Carer" as my occupation on my Lions Club badge, it is who I am and what I do. I guess it would have been different if he had been able-bodied when he got the dementia as a lot are. His vascular dementia is the result of the continuing TIAs, fits etc he has suffered since the major strokes.

As the care needs increase I became the driver, the listener, the finder of information for the doctors and specialists,the one who picks up the scripts and doles out the medication. You are still the cheerleader and emotional supporter of your care recipient but in the end it is a one way trade, you look after them, they do not look after you, or that is the way it is for Ray and I now. Automatically as the disease progresses you take over the tasks of daily living, pay the bills, do all the housework, the yardwork etc.

Ray sits most of the time now, doing his word puzzles and oblivious to the work I do. I am like a paid carer to the extent that I shower Ray, cut up his food, monitor his diabetes, clean his dentures etc just as the care workers do - I just don't get paid for any of it apart from a Carer's Allowance that we get here in Australia.

I have learned as much as I can about dementia and feel I am mostly able to deal with the dementia which he was diagnosed with in 2005. Like others we have battled the lack of information and found some support. We have weathered the growing disinterest of friends and family as they realised that Ray obviously isn’t going to “just get over it” and go back to being his "old self".Duh!

Whatever you say about Ray, he is a battler. He has battled back from the edge many times, from the five strokes and the falls, the hip break, the injuries, the broken pelvis, whatever life has thrown at him. Unfortunately dementia is NOT something you can battle back from and win.

Ray never refuses to go into respite (twice a year), off to Daycare (once a week) or have a sitter. That has made my job as carer so much easier. I know a few people on this site do give their carer a bad time. We all need a break, some breathing space, some alone time - respite provides that. If Ray or anyone else wants to stay living in their own home they have to live with the reality of that as does the carer and family.

Emotionally I am stable most of the time but when the going gets tough I deal less well.I don’t mind looking after Ray when he is healthy and stable. It is the other times, the times when he has falls, has bad BMs, is confused, unco-operative or just like a little boy disobeying him mummy that I find I am losing my patience. It is hard when he is aggressive, although I try to deal with that by just walking away. It is difficult when we have appointments and he doesn’t want to do whatever it is we have to do to get ready and get there.

I have accepted the idea that although I want to look after Ray for as long as I can there will come a time when that is no longer possible.

Sue.

 

[Bookworm]

I have accepted the idea that although I want to look after Ray for as long as I can there will come a time when that is no longer possible.

I, like Sue, can say the same. I have gradually taken on the mantle of being carer - very reluctantly at first and as dependence grows, some aspects of being a carer I accept graciously that once I fought over & other newer aspects sometimes I never have to fight with him or myself over - maybe because I see them coming. I know I am his wife & I know I love who he was - but I believe i am now more his carer than a wife. My wifely roles become more & more limited - being a wife is a shared role with your husband (for me) & there is little shared about our lives - I give all, he needs what I give. He gives me little back except still some help when I ask for it. He has minimal thought about the needs of anyone in the home except himself and does not plan for the next hour, let alone the next day. Caring is what i do in his life and I wear my wedding ring on a chain round my neck to denote this to myself - that I am a special kind of wife I suppose. Thank you for asking. Researchers often don't get much of a response here - you have touched something important I think.

 

[nadul2001]

"This is where Talking Point comes into its own. When the frustration and resentment becomes too much to bear alone, there are always sympathetic listeners here who because they too are coping with this terrible illness, can offer kindness, understanding and an outlet for pent up emotions."


This quote from TinaT addresses something else I wanted to ask; 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?

Marie

 

[Winnie Kjaer]

I am in a similar position to Sue. My husband has had 3 strokes one major one in 2006. He also suffers from TIA's and seizures. He has VAD and in totally dependent for everything 24/7.

I gave up working completely after my husband's second and major stroke and this is when I first heard the word carer being applied to me even though I had already been caring since 2003.

I do everything at home and outside the home as my husband cannot do or decide anything.

The way I see it though is that to my husband, family and friends I am his wife without a doubt and he is my husband to me without a doubt. To all the professional people and the support groups I am his carer but also his wife. I am very proud to be his wife and his carer for that matter and I also write my profession as carer rather than retired, which I also am from the "working" industry and by my age.

At no time have I felt resentful for being a carer to my husband and I know full well that he would have done exactly the same and been able to cope equally, had the roles been reversed.

What I don't know is if I would have been as good a patient as he is!!!!!!!!!!!! I doubt it.

 

[Grannie G]

I have always been wife first and carer second. It`s just as well because now my husband is in a home, I might feel confused about my role, but I`m still wife first and carer second.
Carers can be employed. Wives can`t.