Sue Wilkinson

I joined this message Board in May 2005. It was shortly after Ray had his fifth stroke and I was desperate for answers. It is bad enough for your partner to have a stroke, find the reason, get on medication and recover and quite another to have further strokes.

Ray had his first stroke in December 1990. We were at his brother's place in Queensland and he and Ray had gone out to buy some tools and materials for a small building job. I was home alone and got a phone call to say Ray had been taken to hospital with a stroke, he was 48. I said: "Sunstroke?" as it was a hot day. No, it was the real deal, caused they thought by uncontrolled diabetes. After he had six days in hospital and I had been given a letter for our doctor I drove the 1000kms or so back home. The doctor ordered blood tests, MRIs etc and found him a rehab provider, Commonwealth Rehab, that over a six month period gave him PT, OT etc and trained him to go back to work. He was working full-time,driving, slept a lot still but thought he had got away with what might have turned out to be a lot worse.

I was wary of the future now so I retrained to go back into the workforce too. Nothing much happened though the sleeping a lot became the norm, so I worked and looked after the house and the family. Ray still did some of the yard work but not much else at weekends. We even had two overseas holidays, one in 1994, one in 1998. I was also doing theological studies with a view of doing hospital chaplaincy. I also did Lifeline Telephone Counselling, taught Sunday school, ran various clubs, and volunteered at those organizations my kids belonged to. I was very busy. I was soon working full-time so didn't do much else for a couple of years, then in 1995 dropped out for a year to complete my college work. From 1996 I was doing three days a week work, two days a week as a parish assistant and a few other things.

In 1999 we went to a convention in Victoria. Again we drove 1000kms or so, south this time, catching up with friends on the way. At Deniliquin he had a "turn" we put it down to his diabetes and tiredness. And went on to Bendigo. The convention was pretty full-on and at the end of it, Monday morning, was a breakfast in the park. We walked the few hundred yards from our motel. Ray didn't seem hungry and asked to go back to the motel for a rest. About half way up the hill I felt he was putting a lot of weight on me. I thought he was fooling around. Our friends followed after a while and he still couldn't get up. In desperation one volunteered to take us to the hospital. He was there six weeks, flew to Sydney by mediflight and had a further three months in a local rehab unit. He had had two strokes, four weeks apart, ulcers, pulmonary embolisms, arrythmia, breathing problems, you name it. Neither of us ever returned to work. I became his full-time caregiver.

He had a fall and broke a hip in 2000, had another stroke in 2001 and one in 2005. Each time we went through the PT, OT, neurological tests etc. He now has swallowing difficulties, gout, controlled diabetes, high cholesterol and high blood pressure. Because of medication and multiple strokes he has some circulation problems, weakening liver and kidneys, and now vascular dementia. Let's say life has not been kind to Ray.

Through all of this I have been his caregiver. I have had some assistance from family and friends (not his family) and managed to keep him happy and reasonably healthy. Being a caregiver 24/7/365 is not an easy task and sometimes I have a whine or a pity party. I do not have as much respite as I need and don't expect that will change in the future.

I also had my parents in my care. I brought them here a week after Ray came out of hospital in September 1999. Dad died of cancer (prostate, lung and bone) four months later. I had Mum with dementia for two years after that. She is now living in a Dementia Lodge close by.

I am not writing this for you to feel sorry for me. I am writing this so you will know, especially those who are new to stroke or caregiving that it is possible to go on, even when your feelings say it isn't, for however long it takes. Ray and I had the old-fashioned wedding service and said:"till death us do part" and that is the way it is. The three best things in our lives are our family, our friends and our faith. With that help we live a good life from day to day.