This time last year we were living in a spacious single storey house, surrounded by gardens which Ivan had planned and nurtured. It was situated in a friendly, coastal village where he was known and loved, and we had lived happily there for years.
When I announced we were going to move away, people thought I was mad, cruel, or both. To uproot Ivan from this ideal home, at his age, seemed a harsh thing to do. I think they meant “Why can’t you allow him to live here until he dies?”
The reason was I felt I would die soon unless we moved! I was exhausted, stressed and could not face another winter in our bungalow. Winters always seemed to make life harder to cope with.
His role in our partnership was now limited to that of wise counsellor and decision maker. Because of his Parkinsonian writing, speech difficulties and mobility problems, my role increased to include everything else. As well as being his personal carer, I had become the cook, housekeeper, personal assistant and chauffeur! I also used to play my part in the local community and the church, but I have withdrawn from those activities now.
I have been on duty 168 hours every week (that is 24 x 7) and have not had a break for years. Of course, I am not needed every minute of that time, especially during the night, but I have to be available and alert in case Ivan needs me.
Ivan agreed that we should find somewhere to live with built-in support, like a retirement apartment with a resident warden on site. He saw the sense in making our lives simpler. He said that he no longer enjoyed his garden as he once had. Getting around it was too difficult. Nor could he participate in village affairs in the old way.
There was another reason for moving. Our bungalow was on a busy corner and because of the large windows and sunny aspect, it was full of light. We lived on display like goldfish in a bowl. To block out the views and the sunshine with blinds or net curtains would have destroyed the beauty of the place. Our friendly neighbours, when passing by, would wave at us as we sat at the table or when we reclined in our easy chairs. I knew that as Ivan’s Parkinson’s disease (PD) progressed, he and I would be less able to cope; he might lose more of his dignity and independence. I could not bear the thought of everyone seeing this. We will need privacy in the coming years.
We didn’t find a suitable retirement flat. Instead, just as we found a buyer for our house, a cottage came on the market. It was located in a nearby rural community where we already had family and old friends living nearby (a readymade support network). They knew our situation, so we had no need to explain about Ivan’s PD and limitations. We bought it and moved in last autumn.
Ivan loves the cottage’s traditional features. It is also wonderfully laid out for someone using a wheeled walking frame, with stone flagged and wooden flooring throughout the downstairs rooms. As it is small, our outgoings are reduced, releasing disposable income to pay for his increasing care needs.
Best of all, despite near neighbours, it is very secluded. There is a conservatory at the back which looks over our small, walled and south-facing garden. Ivan sits in the sunny conservatory from breakfast to suppertime. He gazes at the garden, dreaming up plans for the gardener to carry out. We had to invest in a stair lift for him, but the joy he experienced when he first looked out of his bedroom window upstairs made the investment well worthwhile. Sitting propped up in his new adjustable hospital bed, he looks south across fields with horses, trees, cottages and, in the distance, the sea. If he is ever bedbound, this view will bring him endless pleasure.
For me, things are not quite so perfect. My health did breakdown over the winter and, for a few weeks, we depended heavily on our dear family and friends to supply homemade soup and bits of shopping. But they have busy lives and problems of their own, and we could not expect them to help with Ivan’s personal care. It has become urgent to build in help from care providers. We have already applied for a carer’s assessment and we have also had visits from carers’ support workers (from Age UK and the local Rural Community Council). They have provided valuable advice and information on care agencies. They have also helped me to see that there is no shame in being unable to cope. I am not alone as a struggling carer. So now we are, at last, welcoming the help of caring strangers into the heart of our private life.
I am now in my mid-sixties, and started out as a trainee teacher after which I worked in London for the Government employment service. Following the breakdown of my marriage, I left London for Sussex and took up admin-secretarial work, initially at Surrey University. I then moved to Geneva, Switzerland, where I worked for international organisations for 6 years, including a spell at the World Council of Churches. This job involved memorable trips to Africa and around Europe.
Changing direction, I next found myself in Western Massachusetts, USA, studying for a postgraduate degree in counselling psychology and working various part time administrative jobs.
However, by 1993 my ageing parents needed me, so I moved to Cornwall to be near them. It was there that I met my husband Ivan, who is a family friend and was another recent incomer, and we married in 1996. He was diagnosed with Parkinson’s disease in 2006 and since then I have been his carer. I have no children of my own, but I am part of a large extended family, and also share the joys of being a parent and grandparent with Ivan’s family. For light relief I am currently studying maths and painting.