My Story as a Carer
By Jim Ferrier
On October 2012, my wife, Jen, had a stroke. It came ‘out of the blue’ and was shocking for both of us as she had always looked after herself and had been actively involved with a circle of close friends, even closer family and many other interests. The stroke, evaluated as serious to very serious, affected her left side where she had no movement. Everything changed that morning and, as a carer, my new role was confronting. We didn’t know what to expect and the full enormity of the situation did not sink in at the time. Tho’ warned, we didn’t realise how long Jen’s recovery, partial as it is, would take.
The real rehabilitation began when Jen was moved from Emergency to the ‘Stroke Ward’ where specialists such as physios began regimes of exercises and where I would arrive once or twice a day to assist with these exercised. The name of the game was repetition, encouraging the brain to copy. Many would have found it comical (but deadly serious) as I had to move my facial muscles and hope that Jen would follow. Jen could not walk, sit up or use her left hand or leg but we were encouraged by any small, sometimes very small, new movement.
In the mean time I was learning new skills at home. This had always been Jen’s domain and I reverted to my bachelor days of cooking, mainly bacon and eggs and fish and chips. I learned to use a slow cooker ~ what a boon to the harried male and then by trial and error, I became more adventurous. Shopping at the local supermarket was daunting at first but I soon developed an understanding with one of the shelf stackers who would direct me to the right isle. Even today, three years on, she regularly asks me pityingly “and what can’t you find today?”
Jen was declared sufficiently stabilised to be transferred to Rehab and this was exciting and a great step forward requiring a new set of skills on my part. A new daily routine was developed consisting of walking the dog for thirty minutes early in the morning in which I did a lot of planning for the day before going off to the Rehab for the morning exercise session. I also managed to schedule fishing each week and this was a great relaxing five hours necessary for my sanity.
The Rehab Gym then became the centre of our attention and twice a day we would return to repetitive exercises. And then the great day when I was met by a beaming Jen who announced “Look at this!” and her left thumb was moving ever so slightly on command. This was a breakthrough indeed and the word went out to the nursing staff and physios and their congratulations followed. There followed, after much work on Jen’s part, more and more movement in her left leg. It would continue to be erratic with the real fear of a fall.
During this time we had enormous help and encouragement from family and friends and to ensure that no one missed out, “Jen’s Journal” was produced to report progress and successes. With pictures, Jens Journal went out about every ten days to about forty friends and relations all over Australia and the UK ~ recording all the little and not so little successes and sometimes disappointments.
Trying to keep everything as normal as possible, I started taking photos of everyday things and people. First in pride of place in the “art gallery” beside Jen’s bed, were the grandchildren where all their activities were recorded. Our dog, a Scottie, featured prominently and of course, the garden as it developed during the seasons.
Use of the mobile phone was very difficult. Try holding the phone and dialling with one hand! So a phone holder was mounted on a board and Jen then was in communication with the rest of humanity ~ and I could get instructions directly.
And then the day came when, Jen was given a clearance to go home by wheelchair for a day to see how we coped. Getting in and out of a car was another great achievement and Jen came home to a stroke friendly home (thanks to the hospital handyman and builder friend) with handrails in strategic places, ramps, flat paths, chair heights all suitable for the disabled. The afternoon tea was a success and then it was decided that Jen could come home for a weekend.
The weekend trial was successful and Jen came home permanently after 14 weeks in hospital. We were supported magnificently by Transitional Care staff who came sometimes daily to help Jen with showering and physio and the like.
Jen surrendered her driver’s licence and this was a terrible moment when she accepted that she would never drive again ~ a loss of independence was very real. But this was an opportunity for myself as the carer to fill the gap and we then had to plan on a weekly basis the necessary visits to doctors, out patients, physio at the hospital and similar. We soon got to know all the Disabled parking stations where our Disabled Car sticker was invaluable. Quote ‘that sticker was the only good thing to come of the stroke!’
Slowly, Jen began to retake some of the duties at home and a special “perch chair” eased her need to stand in the kitchen and laundry and slowly we developed a system where we planned and cooked on alternative nights. Again, my culinary skills, under Jen’s guidance, increased dramatically and was much more adventurous.
Three years on, as advised by the specialists, Jen continues to improve much more slowly now but an improvement none the less. My carer’s job is now more of a planning role so that doctors’ appointments, physio sessions, shopping and just visiting friends and family can be fitted in. The wall calendar is kept up to date and it rules our lives.
Finally, the last three years have been a testing time for all concerned. We celebrated out 50th Wedding Anniversary, an Anniversary which we didn’t think we would ever see.
As a carer, I must recognise the help and assistance which was given by all the hospital and Transitional Care staff without exception. They followed Jen’s progress and celebrated Jen’s wins with excitement and comforted any setback with sympathy. Particularly, the physios and helpers formed bonds with us until it was like family when we arrived to work. Without their expertise and understanding I don’t believe that Jen’s outcome would have been as successful as it now is.