I awaken to hear that a new report on Dementia says 45% of caregivers experience distress. My immediate reaction was: “Tell me something I don’t know.” My next thought was: “I suppose the other 55% are only prone to the intermittent bouts of depression that does not last long enough to warrant attention.” I have no doubt that every caregiver has those moments when the weight of care is, for a brief period onerous, too hard to bear. Then you gird your loins and fueled by love, carry on.
The report was from the Canadian Institute for Health Information and looked at the impact on unpaid caregivers who were looking after their loved ones at home. It mentions burnout, the emotional toll and the necessary extra daily activities among other factors that result in this distress. Each situation is different but for me the most relevant is the emotional toll.
When friends inquire how I am doing I say I am fine, just tired. That is true. Yes, I am physically tired but it is the emotional stress that gives me the moments of greatest distress. When my husband holds a nightly conversation with his mother’s photograph, I am happy he has found a connection to the past that still resonates. Yet, that is Alzheimer’s world. When I consider how my Bert and I worked together, planned together and the many chores he did with pleasure which falls on my shoulders now, I curse having to live in Alzheimer’s world
When I have to cajole my Bert to have his bath, or entice him with a sweet dessert for him to eat his salad, that is Alzheimer’s world. When I have to lay out his outfit for the day, knowing my paragon of sartorial splendour would look like Bozo the clown if left to his own devices, that is Alzheimer’s world.
Two findings from the report were surprising. It stated that:
In 2016, unpaid caregivers spent an estimated $1.4 billion on out-of-pocket costs. They devoted an average of 26 hours a week to providing care, compared with 17 hours for caregivers of other seniors.
The amount of the out-of-pocket expense was enormous I thought, until I began to add up the extra amounts expended for my Bert. When multiplied by the number of unpaid caregivers it is a fact. However, the real surprise was the number of hours of care.
The book, The 36 hour day, is almost required reading for caregivers of persons with dementia. Some refer to it as the ‘Bible’ of dementia care. When I consider that I live a life for my Bert and also a life for myself, or try to do so, then my day is a 48 hour day. In my opinion 26 hours a week even as an average, does not come close.
I never knew how much I valued my private time until Alzheimer’s entered my life. My Bert and I were always together, but that was by choice. I did not have a shadow permanently attached. I could go to the bathroom without anyone coming to ‘see where you are’. I could make a shopping or lunch date with a friend. Heck I could go to the hairdresser, manicurist, medical appointments, a Scandinavian trek with friends by myself. I could go to Tai Chi or yoga, go on the computer or just get a cup of tea, my current book and curl up in my chosen spot to read without interruption. All that was lost. My shadow went everywhere with me. I have given up those activities that I cannot now fit into the two days Bert attends the Day Programme also known as his club. Every moment, every activity takes into consideration my Bert’s needs, wants, his schedules, his appointments, the state of his mind, his happiness. Every plan is subject to the whims of the disease.
I applaud the researchers and authors of the report. It validates what has been empirical knowledge. I hope it may result in some real support for caregivers. Currently, the focus is on the disease and the patients. However, Dementia is unique in that it may be the only disease that negatively affects the unpaid caregiver as much as it does their loved one.
The Meander: Perhaps my greatest emotional toll results from the illogical behaviour, the deep memory loss the disease has brought to my Bert. My heart aches each time I want to say “Remember….” I catch myself and I am filled with regret because I can no longer reminisce with a husband with whom I have created and shared a lifetime of amazing memories.