Years ago, my wonderful wife started shaking owing to Parkinson’s. Nothing had prepared me for the problems ahead. I anticipated my world closing round me and my friends slipping away. Instead, my life has astonishingly opened up and changed, sometimes for the better.
For several years my wife’s change was gradual, and we continued our lives. Then each excursion became increasingly difficult as her mobility decreased and dementia increased. Life was closing in.
The dementia became increasingly serious and 24-hour safety supervision prevented us from going out. We were allowed more and more home support from personal support workers. Splendid, but no use in the middle of the night when a wife is angered by male clumsiness. Our stress increased and burnout became an issue.
On the positive side, I became closer with my stepson, with whom I once had a difficult relationship, as we worked together as a caregiving team.
My wife’s doctor was worried about my wife’s mental state and my own. She treated my wife’s deterioration and care as a family issue. My own doctor passed me on to a therapist who listened, understood and gave me common sense calming advice. Unbelievably and to her eternal credit, she got stubborn old me to follow it. The advice has been useful way beyond caregiving.
The tragedies of COVID-19 and her increased dementia hit us almost simultaneously. Our perceptive and tactful social worker persuaded us that my wife would do better and be happier in long-term care than at home under our loving care. Everyone would be less stressed. How true that was. We got lucky. Even when COVID-19 entered the home just after my wife’s admission, the staff was able to manage and restrict the spread of the outbreak.
Some of the personal support workers are new and enthusiastic, others have been at the same place for many years. Most clearly love their work and do the best they reasonably can. Just imagine; still looking after old, incontinent, sometimes angry and confused residents for 20 years with kindness and, above all tenderness. I never expected to see strong young men gently wiping food from the chins of frail old people.
My wife eats slowly as she has trouble opening her mouth wide. I have counted: 50 half-full teaspoons for soup, over 60 for the main course and 40 for dessert. But the staff never complain about our slowness.
The staff are heroes, and their value is grossly underestimated both socially and financially.
My biggest surprises? Instead of losing friends during my wife’s illness and, I have made many new ones, I have gained a new appreciation of the dedication of others, and I have become friends with 30 or 40 residents, their relatives and the staff in her building. Some probably do not realize I see them as my friend as I give them a cheerful hello or bonjour! Some cannot reply, others smile or, touchingly, grasp my hand. If for some reason anyone is absent from a meal or a singalong, I miss them.
Through ignorance, I assumed that, with dementia, people would all become similar and characterless; how wrong I was. Many residents in my wife’s LTC home are passive and bored but suddenly erupt in a huge smile if you talk to them. Mostly they are lovable. We have our temperamental long-distance walker, still with the figure of an athlete, who exhausts her escorting support worker by walking over eight kilometres daily. There is the toilet roll kleptomaniac who politely asks me how I am every time we meet. Another gentleman was an avid soccer fan. His wife told me that dementia can have its advantages. It is good that he never knew his national team did not qualify for the World Cup. “We would never hear the end of it!” she said. There is the tiny lady who uses her walker with the skill of a demolition derby driver, to crash into any nearby wheelchair. I am trying to become friends with the lady who imagines and publicly announces that she has won the lottery! And what about all the sleeping in other people’s beds? Common but totally innocent. When you cannot remember where your room is and you are tired, you fall asleep on the first empty bed you see.
The activity co-ordinators tirelessly organize social events such as barbecues. And I laugh at the memory of a water fight. The residents were given powerful water pistols while the staff only gave themselves spray bottles. The soaked staff often found themselves surrounded and fired on by immobile residents in wheelchairs.
I wouldn’t wish dementia and the almost inevitable living in long-term care on anybody. It is a cruel disease in a cruel world. But in some ways, by helping my wife through her illness, my life has become better and more interesting, and I no longer fear that disease if it may strike me.
Ray Haythornthwaite lives in Ottawa.