This is the story of my experience with Alzheimer’s disease, the people I have known who suffered with it, and especially my darling second husband Paul who passed away at the age of 81 in 2018. As a nurse I was aware of the problems elderly people often developed as they got older, and I soon became personally involved with sufferers among people I knew well. The first was my mother-in-law Lilla. A very independent lady since her husband died, she taught in the local primary school and loved helping her grandchildren with their reading. Around aged 70-80, her driving became erratic and I was often called to help her if she became lost or could not turn her car in a street. Later, she became unable to recognise people she knew, like myself, saying ‘my daughter-in-law gave me this!’ Or she would be found crossing a road early morning, saying she had been asked to help with teaching in a school, and was getting the bus there! Eventually she went into care, where she died unable to swallow.
After Paul asked me to marry him, I began to sense that Alzheimers could be a possibility, but I was becoming so fond of him I agreed, feeling that with my training and experience I could cope. He was 10 years older than me, but we shared a lot of interests. The first few years were wonderful, with holidays to Cornwall, Donegal, Paris, Prague, Enniskillen lakes, a cruise to the Canary Islands and one to Norway. Weekends to Londonderry and Galway by train, the Giants Causeway and the Bushmills distillery We visited his daughters in USA and Canada, and a good friend in Galway. Paul helped redecorate our new bungalow home in Holywood, Co Down, and became involved in the local community: church, coffee shops and Men’s Shed, and local courses in pottery in nearby Newtownards. We loved going for walks by the shore and Scrabo Tower.
The first signs of dementia were noticed in his driving, sometimes getting lost, and on one occasion finding himself miles away in another town, but also mistaking his own ability to do things, and getting into difficult situations when I was not with him. Toiletting also became a problem, and he became more dependent on me thinking ahead regarding his needs. A skilled woodworker, he found it hard to accept his inability to make an Ikea chair, and we almost came to blows as I tried to help. The Alzheimers Society became a great resource for help and advice, teaching me the option to ‘divert, distract and deflect’. He came to accept my advice, saying, ‘Bossy Boots!’ with a twinkle in his eye, when I suggested other options. At one point, at an Alzheimers party, he sought out the staff worker who had helped us from the beginning, and asked her straight out, ‘ What is the future for me, how will Alzheimers affect me?’, to be told honestly, ‘There is no cure’. He accepted this, and my help, as his condition deteriorated. Eventually he went willingly into care, in a beautiful place by the sea at Portaferry, a long distance for me to drive, but in a room looking right out at the sea, where he believed his own little boat was moored just out of sight. We had our last night together there when I took him out for dinner and a room at the local hotel. Soon we found a residential place for him in Holywood until it took too long for assistants to shower and dress him, and he was moved to another care home in Bangor, where he received excellent care to the end. Gradually over this time, he became less mobile, speech and swallowing deteriorated, but he still enjoyed magazines with pictures, music, poetry, and Skyping with his family abroad. In the end, he developed pneumonia due to his inability to swallow, with food going to his lungs and causing infection. A week in hospital on antibiotics helped, but doctors advised that another course would only prolong the problem, and with his daughters it was decided to take him back to his room in care and keep him warm and comfortable. After 3 days he passed away peacefully, having lived a long and full life, loved and cared for by good people and knowing he was adored by his family and myself.
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