Share magazine

[KenC]

There was an article in the Share magazine regarding Brucie this month titled In Sickness and in Health. We all take our marriage vows very seriously and many like me never think that we will have our lives shortened or interupted by an illness such as Dementia. My wife and I were married in Church in 1972, and this was in a church that I had always attended as man and boy. My wife came from a town nearby but like me she was religious and have always stayed that way. We were asked by the priest to take our vows again later on, and we did, but even though we did we were never really sure what was around the corner. I was diagnosed when I was 56 and my world fell apart, but it was always my intension to be realistic about this while I could and if I died or anything else happened, I would never stop my wife from being friendly or taking up a relasionship with some one else, nor would I expect it .
I think that carers get a very rough deal anyway, and like everyone else they are entitled to a little happyness when they can get it, and god alone knows looking after a patient with this illness is a lot painful process. So let us be realistic and let carers like Brucie have happiness as long as they can, they have had enough pain and anguish in theur lives.

Good luck to Brucie and also Share magazine, you are doing a wonerdful and worthwhile job, you and others here have made my time on the computer a lot better than I expected.

Best wishes
kenc

 

[Nutty Nan]

Dear Kenc,
Thank you for your post. I had intended to respond to the reply in the Share magazine to Brucie's story, but couldn't quite find the words and then thought the matter might be best left, since everyone is obviously entitled to their opinion. You confirm what I hoped and assumed the 'patient' would want for their spouse who had been caring for them: some support, friendship and even love. It is not as though Brucie had stopped caring for his wife. I suspect he is better able to care for her if he has a more balanced life than if he is down-in-the dumps...... and now my thoughts are beginning to 'swirl' again, as there are so many individual factors at play, with everyone's situation being so very unique, that we simply must not judge. Brucie's honesty deserves our respect, and we each have to make of our lives what we can.
Best wishes to you and your wife, Ken!

 

[KenC]

Hi Nutty Nan,
Thanks for your reply.
I had read this article a few times to make sure that I was not getting it wrong and then my wife said something about it, which made me realise that I had in fact read it correctly in the first place.
I admire Brucie for what he has done for his wife in the first place, caring is not an easy thing to do because you in fact lose control of your own life. He in my opinion deserves a chance to start again as do all carers. As I said I can understand that we take the vows in sickness and in health, but lets be honest how many of us expexted to get this illness when we took the vows.
How many of us expect to live to an old age. 20 years ago I nearly lost my wife after she had a serious road accident through no fault of her own, and we had two very young children. But we had to get on with life and pick the bits up, which was hard.
I prayed that she would live and she did, after three years in hospital and umteem operations.
We think the world of each other but if it came to it, I would never object to her starting again when this illness has done its worst. This is my own view because I only know what it is like on the other side of the fence, which is not easy waiting to see how long the medication lasts. But I feel that caring is a 24 hour a day 7 day a week unpaid job with little or no thanks at times. I have met some with Dementia who do not give there carers a second thought and that shocks me.

Go on Brucie enjoy your life while you can, thats my moto and its the only way to do it.
Regards
kenc

 

[Tender Face]

Dear KenC

You are quite the most generous hearted person - I love to read your posts - thank you!

Just read September's 'Share' and confess my heart turned over for a moment when I read the words "Whilst I have no wish to judge...." knowing that usually precedes a direct or implied judgement......

I would just like to "second" all that Nutty Nan has said .... especially......

Brucie's honesty deserves our respect, and we each have to make of our lives what we can.

Thanks Nutty Nan... you managed to put into words what's been 'swirling' in my head and helped me make some sense of it... My simple philosopy on life (FWIW) is generally that if something is harmful or hurtful to someone then it's wrong... but I can't see any harm or hurt in Brucie's situation..... just a lot of love and support for everyone involved......

Thanks, Brucie for your honesty in the original article - thought-provoking to say the least!

Love to all, Karen (TF), x

 

[daughter]

I've just read the letter from Ruth Pole in the September issue of Share magazine and I now realise why people are mentioning the "Sickness and Health" article in the August issue again this month. Yes, we're all entitled to our opinion and here's mine.

Ruth took issue with Share for giving its "seal of approval" to Bruce's story. I don't see magazines as giving seals of approval, they should just present stories such as Bruce's for us to either relate to, or not - depending on our own circumstances. If we don't like what we read then we are entitled to put forward a different view which Ruth did.

But to say that publicising such a situation is "demeaning to both women" I would say is absolute tosh - how can it be when these women have someone as generous and big-hearted as Bruce in their lives? It's a heart-breaking situation that has been thrust upon them all - and a situation that must be shared by a great many others who have to try to hold onto a bit of happiness where they can - but obviously not a position in which Ruth has found herself so she feels she can cast aspersions.

Ruth mentions a "Menage a trois" ("A living arrangement comprising three people in a sexual relationship.") which is a provocative and wholly inaccurate description.

If Share did NOT publicise such a story, they would be conspiring in covering up some of the harsh realities and tough decisions of living with the consequences of someone having AD. Surely the idea is to raise awareness of all these complications.

Thanks Bruce and Share for the excellent article.

 

[Brucie]

Hello everyone

thanks so much for your contributions and support.

Just one thing, the term menage a trois was one used in the article, not one proposed by Ruth. Actually, I originally used it in conversation when the AS journalist was interviewing me as I was doing 60mph along the Hog's Back in Surrey. I'd never looked it up in a dictionary until this week. [for the computer types, I am habitually aware that I should RTFM!!!]

I meant the term to mean that there are three of us in my life now, and was being - as usual for me - loose in my interpretation of phrases.

I'm quite a simple minded person, and the sexual meaning never ever occurred to me. I just like to use different language - as Reader's Digest says "Towards more picturesque speech!" Sometimes that backfires! Jan and I have not been a couple in that respect since 1999, and our relationship has since changed, though is still incredibly loving, in a companionship way. It occurs to me almost that it has moved to a higher plane. Bizarre.

I took huge exception to the use of the word 'demeaning' in its context, but realised it came from a basic ignorance on the part of the writer, so I forgave her that.

I suspect she is not an early onset carer for a spouse, in a marriage of 38 years, with a hugely damaged spouse who can now do nothing, and where even the basic acknowledgements from the sufferer that the carer gets are possibly only in their own mind. Even if she is, then it takes a long time caring for someone to reach the state of mind to change in some - any way.

I'd have been content for her to say that she didn't agree with what has happened.

But not to judge - even if she says she wasn't, and not to do the 'demeaning' bit, not to question my dedication to Jan and to our marriage vows, and finally, not to question AS and Share for publishing the article.

... there is a saying, is there not from a well-know source... "judge not, lest ye also be judged"

Thanks everyone, and especially Ken

 

[Brucie]

PS I've popped a short reply letter in for next month's Share.

 

[connie]

Have posted my "tuppence" worth on the main forum.

 

[Nutty Nan]

Sayings

To add another 'saying' which seems to fit this thread (and which, I think, has been mentioned on TP before)
"Do not judge someone until you have walked a mile in his shoes". Quite!

 

[KenC]

Share

Hi Nutty Nan,
I could not say any more after that, only that we all go down this road through no fault or wish of our own and no one knows how they will cope with the situation until they have reached it or gone past it.
We are all very different and all react in different ways.
As a lot of people at the AGM that I spoke to said this week end carers have a short straw in many ways because they have to care for someone they love dearly, knowing full well that sooner or later they will not know what they are doing or who the carer is.
As a person with Dementia it hurts to know that I will go that way but, As I am in the early stages, have the time to try to help others before it gets too bad.
But when the person you love and care for, goes into a care home and does not know you what on earth can you do.
Until we are in that position we will never know. But I feel that even though I class myself as a church person with the illness I can not see what Brucie has done wrong if anything. If we knew what was going to happen in the future would we take the marriage vows, I honestly do not know.
I think we should all wish Brucie well with this. I feel he like many others deserve a bit of happiness.
kenc