To partners of people with dementia: Do you think about the future?

[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.

After the encouragement of all your very insightful responses in the first thread, I would like to get your views on another issue: Do you find time to think about what your futures may look like? If so, what are your thoughts on this?

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

 

[TinaT]

If my husband dies before I do, I will be left financially much worse off, realistically never able to form a new relationship because of age and the emotional stresses involved in long term caring. My health will be worse. I already have disabilities which cannot be corrected.

In other words, a very bleak present and an even bleaker future.

xxTinaT

 

[Skye]

I'm not quite as despondent as Tina.

I'll be better off financially if John dies before me, because I'm funding his care. Although I'll lose his pensions, they are much less than the fees I pay. And I'll certainly buy a smaller house.

Physically, I'm aging rapidly, and things are going wrong all the time. I don't know how much is due to stress and how much is normal aging, but the prospect is not good.

I suppose I'm not frightened of being on my own, as I have been widowed before, though of course it's harder at my age.

I think the hardest part will be the loss of focus in my life. At present I visit every day, and the staff are my new family. Although I have other interests and friends, I'll miss that.

 

[sunray]

Hi again

Thinking about the future is something I do from time to time. I have been carer to Ray for ten years, we live on a couple of small pensions and some money we had accumulated for that "trip around Australia" that all Aussie retirees look forward to. Now we have less money and more time but Ray is beyond tripping here and there. We were both brought up to be careful with money, so we get by.

I also think of what will happen when Ray gets to the stage where I can no long handle his care at home. My mum aged 91 with end stage dementia/Alzheimers has been 8 1/2 years in care so I know that people do not necessarily die within a short time and may go on living for many years with the extra staff looking after their needs and making sure they are well fed etc.

Way beyond that I guess is widowhood, if I make it that far. It is unfortunately true that many care recipients outlive the person caring for them. All that extra work and worry we carers have takes its toll, and so I wonder what will happen to me and what will happen to Ray if I go first.

Sue.

 

[Helen33]

I found I had to discipline my mind. At first I was really worried about the future. How old would I be; how well would I be; how secure would I be??? Over a period of time, I taught myself not to worry about the things that could not be changed and concentrated on those things that could be changed. Maybe that is partly due to why I am so ok after my husband passed away in February of this year. I knew that I would need a satisfying and worthwhile life if Alan pre-deceased me. I started to begin to think about what I would like that life to involve and opened my mind to possibilities. I made sure the finances were all in order and that I would not have a massive clean-up operation if Alan pre-deceased me. I took care of my physical and emotional self as much as I could when caring for Alan and even then I had burn-out a few months before he died. Whenever my mind wondered into areas in which I could do nothing about, I taught myself to let these thoughts float past rather than capturing them and feeding them and then ending up feeling a worried wreck.

Talking Point was vital for me in keeping a sense of self worth and I found it empowering. However, I am very aware that all these things depend on the support one is given on very practical levels and I had good enough support to be able to have the time to use Talking Point, to continue working albeit part-time and to venture out of the home in order to meet others or to participate in sporting activities which make me feel good. When I knew Alan was dying, I worried that I would experience a vast, empty void but this did not happen. I suspect it might have happened if I hadn't taken previous steps in taking full responsibility for my future and preparing the way a little.

 

[gigi]

Do you find time to think about what your futures may look like? If so, what are your thoughts on this?

Yes, I do ponder the future. But I don't worry about it.

There is a big age difference between my self and my husband (who is still at home with me).

If he goes into care permanently, or dies before I reach retirement age...(another 6 years for me) I will have to find work in order to exist financially...if I'm physically and mentally fit enough.

As caring has taken over my life there has been no time to develop new interests or pursue existing ones,so that would be something to look forward to.

The future is uncertain for us all. It is probable that I'm so involved with caring 24/7 that all I do is get through the next 24 hours with eyes firmly fixed on the road ahead!

 

[BeckyJan]

Before dementia arrived we had already sorted out our financial future as best we could. Property involved and we worked hard on that - so I live in our investment. The future concern is where to and when do I move. When discussing these things our children have their own plans regarding their Dad should I die first - so I feel content about that.

In the early dementia days I realised I need people and friends more than ever. I paid a carer for 1-1/2 days each week to help me to enjoy hobbies and I made every effort to speak to and include friends daily. This has left me feeling more secure on the emotional front.

Basic affairs are in place; I have already lost my husband but I do worry about the void left when he dies.

 

[connie]

Do you find time to think about what your futures may look like? If so, what are your thoughts on this?

I cannot imagine a future without my dear man. He is younger than me (68), healthier than me (apart from the dementia), and will probably outlive me, even though his is at end stage dementia.

After 3+ years in care, his care home is my second home, his carers are like family.

Having already been widowed some years ago I know that there is no point in worrying or planning for a future.

 

[Izzy]

As my husband is 21 years older than me I used to worry about the future when we got married first (31 years ago). As time has gone on and he has developed dementia I find I don't really worry about the future now. I still work full time and I am lucky that I will have a decent pension when I retire. I know I would have to downsize the house but I couldn't live here without him. We never ever talk about the future. Bill still has a lot going for him still and I think it is my job now to worry about my future not to worry him over something he can't control. If I'm being honest I am more worried about losing Bill while my mother is still alive. In a weird way I think I could cope on my own but not on my own with my mother.

 

[TinaT]

One thing which I've omitted to mention is the ethical one of trying to do one's best for a husband/wife who because of this terrible disease, does not have a voice of their own
The carer is faced with a million and one ethical questions in daily living because they have to try to balance the voice of the dementia sufferer who is not able to speak for himself/herself with the situation they are faced with.

In a hospital setting, wifes/husbands/family have to be extra vigilant because the patient with dementia often cannot speak up when they are in pain, or not being fed or are not getting the help they need. In residential settings the same applies. The wife/husband also has the main burden of visiting and negotiating with care home managers, doctors, nurses etc.

In most other diseases, right to the end of life, the patient can say what they want or do not want, but not when the illness is dementia. Some dementia sufferers may have already made their wishes known in a general sense but towards the end of life, the burden of decisions rests with the husband/wife who is the main carer.

xxTinaT

 

[Bookworm]

Others have said some of the thoughts that cross my mind - I didn't think of the future when I married a man 15 years my senior - I would encourage everyone contemplating this to be more circumspect. We have had many good times & there may be a few left - but increasingly I live alone with a lodger. So the future for me is to downsize if/when he goes into a home. This is annoying as I was in the house before we married. While I love the man he was & try to love the man he is - I suspect I will be better able to cope once on my own and much more peaceful and will have an amazingly large amount of free time. I know from time apart (e.g. a day or weekend away)that I will have less stress and will sleep better. I will re-find myself - i am trying to do this already - e.g. while currently running two peoples lives I have had to dig deep to re-find the very organised person i really am as I can look a bit chaotic - but I am also a very placid person normally & very optimistic & this is hard to maintain currently - so I think I will revert to type.

I think I will be young enough to make a new life for myself but doubt I would take lightly the thought of entering another committed relationship. I like my own company and freedom and dislike the constant obsession (I have to engender to keep our lives afloat) with what needs done & when & how.

So I view the future positively - of course tinged with sadness & regret but I don't know how to make the leap there & see from what i read here much pain & suffering & difficulties must be endured before I reach my final respite.

 

[Skye]

One thing which I've omitted to mention is the ethical one of trying to do one's best for a husband/wife who because of this terrible disease, does not have a voice of their own

Tina, You're right, of course, and it's a terrifying responsibility. It was hard for me when the doctors weren't going to treat John's MRSA, and I insisted. Then the doubts set in; was I just prolonging his agony? I put my doubts to John's Charge Nurse, and he reassured me that John still had quality of life. As it has worked out, it was the right decision, but it might not have been.

But I think the same problems arise when a son/daughter is caring for a parent. I had to make some difficult decisions when my mother was dying, and that was just as hard.

 

[Grannie G]

On a practical level, once we had a diagnosis, I knew I had to be able to control all our finances to save hassle later on. I also knew if my husband outlived me, my son must have the authority to make decisions.

On a personal and emotional level, it took me all my time to live with dementia from day to day. I didn`t and still don`t think about a future without my husband . I will face it as it comes, as I am facing the separation now he is in residential care.

The time scale of the progression of dementia is impossible to predict, we have no idea how long we have together, so we do not know how we will be in ourselves when we are widowed.

 

[Countryboy]

Hi if only we could my wife come’s from a family of fortune tellers in the photo is her Great Gran-mother and her Gran-mother she also had an Ant and a cousin who still tells fortunes today

 

[maryw]

Lovely pictures and very interesting, but personally I don't think I like watching films knowing the endings!

 

[nadul2001]

"

while currently running two peoples lives I have had to dig deep to re-find the very organised person i really am as I can look a bit chaotic - but I am also a very placid person normally & very optimistic & this is hard to maintain currently".

I think Bookworm is touching on something very interesting here, and TinaT mentions all the ethical responsibilities that you now have to take on. It makes me wonder whether you feel you have changed as a person, since your husbands or wives developed dementia?

And do you think your gender matters? I mean,does it affect how you think of youselves as women or men? (hope that make sense).

Many thanks for all your contributions

Marie

 

[Starshine]

Again very interesting, and I guess I am in a different space just now than many of you, my dealings have been totally with inlaws and family. But I can agree that caring takes over your life, and your conversation, I have given up most of my work, and probably will not be able to get back full time work after all the years of caring, finances are always hit, even self funders often need back up and help in lots of areas. I am lost without my in-laws around, they have been part of my life for 50yrs or longer, Aunt still needs our help, I am constantly running in and out of the home, still caring still doing, still exhausted and in ill health myself, tears are always on the surface ready to fall for the hopelessness of feelings we all endure permantley, if all that sounds mawdling I guess it is, but its the responsibility as well as the physical and mental parts of caring for our loved ones that wears us out. Why do we do it, people ask, let the authoritys deal with it all!!! WHY? because we love them and care for them, and want only the best we can do for them.

Starshine x

 

[Helen33]

It has certainly changed me. I have had to expand enormously and for that I am grateful. I have had to learn to work in two different directions at the same time. I believe in promoting freedom, choice and equality but I learnt that my husband couldn't cope with this and so I had to change myself for his benefit whilst at the same time maintaining my own beliefs with regard to myself and my work. My husband was much more content once I made choices for him and took away some responsibilities from him. It remained important to make sure that he kept a sense of self value. I felt I had to turn myself inside out and upside down in order to give him the best that I could.

 

[gigi]

Hello Marie,

It makes me wonder whether you feel you have changed as a person, since your husbands or wives developed dementia?

Oh yes.


Looking back at my original answer makes me realise I'm not "digging deep" any more. My own life exists on a "coping" plane and the essential me is in hibernation waiting for the spring to come.

I mean,does it affect how you think of youselves as women or men?

That's an interesting and thought provoking question...and instantly I can honestly say that I certainly don't think of myself as a woman.....

I think I've lost my feminity...now that does give me pause for thought.

It's one I'll have to reflect on.

Love xx

 

[lesmisralbles]

I found time to think about my life without Ron, a few years ago.
In reality, what I thought, and what has happened are so far apart.

Looking after a loved one 24/7 for a few years, and then, nothing. Gone.

My life was so taken up by careing, I did not care about me.
It is a big pill to swallow.
Now on my own, I am empty. Hollow, there should be life in me, but it has disapeared.
No one to say good morning to, no one to visit. No structure to the day. I think that is what I miss, structure to our day.

Barb X