Somtimes I am really dumb. I think I have listened to what a person has said but I haven't really heard them. Tonight Ray was asking me a question. Now he doesn't have aphasia but the dementia seems to be slowly robbing him of some language skills.

"What happened to the orange thing?"

"What orange thing?"

"The orange thing you took."

"The orange thing I took from where?"

We did this for a while before I realised the "orange thing" was a half eaten candy bar that I had taken off the dressing table this morning. I had put it in the bin. Ray had suddenly discovered it missing and wanted it. He is a diabetic, he has a sweet tooth and he does hide food so he can eat it without me seeing him do it. Mind you it does show up as a high sugar reading so I usually do know he has had "extras".

I know that the explanation was not satisfactory to him. He wants me to ask what I need to do with something that I know is his. He doesn't need me to judge his actions. He doesn't need me to be his mother. He needs me to sympathise with his needs and treat him as an adult. I failed the test this time as no doubt I have done countless times before.

It is not easy being a caregiver. It was hard from the beginning to make the transition from wife, mother, worker etc to being principle caregiver and the one responsible for all of Ray's various needs. It was hard with his first stroke in 1990. Looking back now I can see it was a mild one as he was back to full-time work within six months. But it was the first ripple in our lives. The realisation that we were vulnerable, flawed in some unthought-of way. He recovered enough to go back to work but I don't think either of us went back to being as confident again. We were both aware of Ray's deficits. I compensated by taking over his inhouse chores and doing some of the yardwork too. He never recovered his energy levels so we didn't go on with our planned renovations etc.

We had some good years from 1992 - 1998. Not so much 1991 as the first year post stroke was full of rehab and uncertainty as everyone's seems to be. I also contracted viral pneumonia and was down for six weeks with that. But we got back into doing most of the things we had done before, not all of them...sigh. But life was good. If someone had asked me if life was Hell then I would have said of course not. We were coping, not quite at the same level as before but doing fine. I worked, first full-time, then part time while I finished my Diploma in Theoology. From 1995 after I graduated I worked part time in paid work and part time in ministry, unpaid of course. But we both had a good life. Ray was independent of me, working, driving, socialising etc. That all seemd pretty normal at the time.

Our two older kids got married in 1993 and 1994. About then I noticed my parents getting frail, Dad had been diagnosed with cancer in 1992 and I was doing more with them. In 1997 Dad lost his licence because he failed a test. The hormone tablets he was on made his hands shaky in the mornings and that showed up in his driving. Poor man, it devastated him. I took over taking them shopping etc. I squeezed that in after work or by working a half day and having the afternoon off. As a part-timer I could do that. I was so lucky.

Then the 1999 strokes happened and all that has been pretty well covered in previous blogs. Moving Mum and Dad in with us, Dad's death, Mum's Alzheimers. And of course for Ray the hip break in 2000, the next stroke in 2001, then a kind of hiatus period when only little things happened, falls, choking fits, so many kinds of treatment and therapy to hold back the ravages of stroke. And another stroke in 2005, with the onset of vascular dementia. Then the fractured pelvic and cracked hip socket in 2007 and more deterioration in 2008....

BUT life is not Hell, not for me and not for him. Life is what we make it. It is full of changes and challenges, it is full of sadness as our friends age and get ill or move away from us. We cope with deaths in the family and the isolation that stroke causes. But we cope. We get as much fun out of life as we can. Ray has his sunny verandah and his find-a-word puzzles, he has the few friends that still ring and come around. He has a good caregiver (me) who waits on him hand and foot and treats him like a little prince ( ok, not all of the time...lol). So he has deficits, but so do a lot of people his age for all sorts of reasons. And of course there are some of his cousins etc he has outlived despite their seemingly healthy lives. Some have succumbed to cancer, heart disease and strokes, all the things that usually start decimating the ranks of the over '60's.

I can't say we have had a bad life. We have had some bad moments and I don't always deal with the challenges as well as I would like to. I have this ideal superwoman image that I try to live up to from time to time. Since 1999 all five of our grandchldren have been born and what a blessing they have brought to us. No-one knows how much they mean to us (except other besotted grandparents of course) and they have so enriched our lives. We have seen our children mature and take on new challenges like Shirley and Craig studying for two years and now out in full-time service with the Salvation Army. We are also blessed in our boys. They are not perfect, like us, their parents, they are flawed human beings but they are our flesh and blood as we love them and they love us.

I think if there were a sliding scale with Heaven on one end and Hell on the other I would say we are closer now to Heaven than we used to be. Despite everything we have matured in our faith, in our committment to each other and to our family and to the community around us.

I seriously don't think "Life is Hell after stroke." It may be for some people, but not for Ray and not for me.