Ivan’s joy at coming home after 5 weeks respite was marred when he discovered his bed had been brought downstairs to the living room. “I feel as if I have been written off!” I explained that, on the contrary, every effort had been made to enable him to continue living independently. Fortunately, he realises that the new arrangement has made his life much simpler, given his slowness and stiffness. Using the stair lift had become dangerously awkward.
For the first few weeks in the nursing home he seemed to have reached a new stage of Parkinson’s disease (PD). He was often physically helpless and incapable of clear communication, apparently semiconscious, and he needed spoon-feeding. Sometimes he had to be hoisted between his chair and wheelchair for getting about.
When alert, he was living in the past and unable to make sense of his surroundings. My mood swung between tearful and giggly as he explained that the home was a military establishment, or a hospital. On a good day, it became a hotel, but he still wasn’t able to identify me exactly, though he knew I was someone important to him.
Our local PD nurse came to review him. She explained that his condition was typical of PD in the later stages, and that we could expect good days and bad days. Thankfully, he had good days when his daughter and baby grandson visited. In fact, all the residents perked up with the sight of a 2-year-old running around.
The respite was extended from two weeks to four, and gradually he began to rally. Plans were made for him to return home, if we could get the right equipment and care package in place to cope on a ‘bad’ day. We already had a splendid amount of hardware to help someone with mobility difficulties, and experienced carers were lined up to come in pairs four times per day. For safety reasons we needed to get a hoist (carers shouldn’t manually lift someone who is not weight-bearing).
By the end of week four he could stand and move himself from his chair to a wheelchair. He was also feeding himself (with no sign of hand tremor). He kept asking for his “trolley” – his walking aid which really helps him get moving. The staff would bring it to him when they had a spare moment to help, and he began taking shaky steps again.
With this welcome return of strength came a less happy return to full awareness, and he desperately wanted to come home. Every day that passed, when I got up to leave, he asked “Aren’t I coming home with you?” I promised that he would return as soon as the hoist had been delivered. It came during the fifth week and by this time Ivan was better than he had been since Christmas. Everyone who had seen him during his illness was amazed at his recovery.
People asked me, “How do you feel about him coming home?” I admitted that my feelings were mixed. After 4 weeks of rest I was feeling refreshed and human again. I managed to get to the hairdresser and the doctor, and to take some wonderful walks. These are the sorts of things which seem impossible with a full-time caring job to do. Although it is great to see him enjoying his home again, I do wonder what the future holds.
He is getting on so well that we have reduced the carers’ visits to one person morning and evening. He has also agreed to go 2 days a week to his beloved day care centre. He does understand that to live his dream of continuing at home, he must let me have regular breaks too – bless him.
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.