why am I doing this?
A page in the diary "Sue's thoughts on life"
Written by suew Monday, 19 October 2009 00:03
Someone asked me on Friday if I found looking after Ray satisfying? WOW. That really opened a can of worms for me. After all in this present generation I guess if you don't want to do something you just DON'T so if I look after Ray it must mean it is what I want to do, right?
Why do I look after Ray? Partly out of a sense of duty and loyalty. I am old-fashioned, so when I said "for better or for worse, in sickness and in health, till death us do part" 41 years ago I actually meant it. I know times change but on the whole I haven't changed that much. And 41 years of loving someone does count for something.
If I were to leave Ray it probably would have been in that first year after he came out of hospital after a four and a half month recovery and rehabilitation period after the two major strokes in 1999. But by the time I thought about it I had moved Dad and Mum in and it was just as easy to look after three people then two people four months later after Dad died,as it was after one, right ? Wrong, but on the other hand I couldn't stop looking after either of them. Who else would have done it?
So I looked after Mum until she moved into a Dementia specific Lodge two years later and then went on looking after Ray. It seemed so easy to look after just Ray after looking after Mum and Ray. Which is why I am sometimes slow to identify with someone who finds looking after just one person hard. But then I remember we are all suffering here, from the loss of the person we love as they turn into a person we find it hard to relate to. Dementia is a horrible disease and if we find the going tough then we need a lot of support, some of it from people like me who have been there and done that.
It has been harder looking after Ray since 2005 when he was diagnosed with dementia. It has been hard to watch the few things he could do confidently, like the washing up, tidying his cupboards, keeping himself clean and tidy, doing his own showering etc gradually become things he could no longer do. Now his language skills are starting to go too. And we are dealing with incontinence every day instead of now and again.
Dealing with someone who has dementia certainly strips you of a lot. Or maybe it just strips life back to basics. It certainly makes you appreciate random acts of kindness, the help strangers, the support of health services and most important, the support of your few remaining friends. And it does give your life an extra dimension. Now you know what endurance is, you know about health issues, specialists appointments and medications. And a lot about pain and suffering, particularly about emotional suffering. You also know about what loyalty and faithfulness means, both from your own family and those wonderful people who still consider you THEIR friend.
I have always believed in supporting others. I know how hard it was for me as friends dropped away. I suffered from a feeling of rejection when I heard about the weddings, parties and get-togethers I had not been invited to. I dealt with the pain of losing those I had thought of as my best buddies. I felt envy as I listened to the talk of trips away I would have enjoyed and kissed good-bye the dream of us retiring and going around Australia.
Sometimes I still dream about what would have happened to Ray and I if he had not had those two major strokes. Or what could have happened if I had put him into a care home or simply out of my life. What if I had chosen "freedom and my own way" instead of becoming a carer? If I had continued with my life, as a single, seperated, woman would life have been better? I shudder to think. I don't think I could have lived with that decision.
When people ask how I cope I answer: "Each day I put my feet on the floor and stand up and say: 'This day I choose to look after Ray' and so far it has worked out." I guess what I am doing is working out those wedding vows: "in sickness and in health". But whether I am up to doing that until death? I don't know.