This is the week when the nation is asked to focus on dementia and its effect upon those of us who are living with, and in my case ‘living for’, someone with dementia.
One big problem is the word dementia. It covers such an enormous span of conditions, where the symptoms can range over a wide range of outcomes! The early effects of dementia may be barely discernible, or the disease may be at a level that is manifestly severe or somewhere in between. When my wife, Dorothy, first started to show a tendency to not remember events, people or locations, I didn’t even consider it could be Alzheimer’s, in fact I hardly knew that they were symptoms of anything other than ageing!
About three years ago when it had become more obvious that her memory was seriously failing and after discussing this with our family doctor an assessment by a specialist team was arranged at a local hospital. Until then, Dorothy seemed otherwise to have been able to manage our household, shopping, cooking, cleaning with only a little help from me, and even drive our car responsibly. From that assessment I learned (and Dorothy agreed) that she should no longer drive but, most importantly, I needed to learn more about how her gradual memory loss would accelerate and change our lives so dramatically as we moved into our eighties.
I will always be grateful to Dementia Australia who, at that time, was about to launch it’s first-ever information sharing course designed for ‘Men in a caring role’. Those sessions really helped me to come to terms with the practical ramifications and the progressive nature of Dorothy’s Alzheimer’s disease. Just attending a few sessions with other men who were also facing a variety of levels of the disease, and the different kinds of needed care, enabled me to see I wasn’t ‘the only pebble on the beach’ and, from that point on, I gained an appreciation of the condition, and realised that I needed some help to develop the confidence to cope with the pathway ahead.
And, as you may have read in my earlier posts, it has been a pretty rough pathway at many times! Despite having some home help for a year or so, and respite at times, it was my family who finally convinced me that it was time for Dorothy to move into full-time residential care where she has now been since December 2019. I visit nearly every day and only now I can almost relax with the sure knowledge that she is in a safe, clean, happy environment. I miss her terribly and the separation is almost unbearable after all these years, but I do know I could not give her the quality of life she now has and I also know that my health would be far worse if she were still at home.
Learning to live alone should be easy, millions of men do it – it’s just not the same when you are ‘forcibly’ separated from your loved one who is living elsewhere! Coming to terms with that ‘together but apart’ concept is taking me a long time to accept and change my way of life…..but, I am making progress and recently, on three separate occasions, had a ‘week off’ over a period of time, visiting three of our children, one in Brisbane and another two in country Victoria. The most incredible and heartening, and perhaps scary, truth is that Dorothy seemed hardly aware that I didn’t visit!
Most of our married life was lived in the ‘pre-digital’ era and they were, on the whole, wonderful, years, as we grew our family, our homes and my career. How fortunate that I can remember those (mostly!) happy times. But they are no less happy because Dorothy can’t recall them. They happened, and I thank God for that!
Dementia Action Week. Yes, for me that’s every week, in fact every hour. If your life is affected by a partner or a loved one with dementia, at whatever type or level, please make contact with Dementia Australia. You need all the help you can get!
For my part, I am going to continue to talk to Dorothy with stories of our early years, how we met, where we lived, stories about our children, our journeys, and our love. Maybe, for Dorothy, some of that will resonate beyond my mind…….. Here’s an internet link for you to participate in a current survey which will be of interest to you : https://www.dementiadaily.org.au/discrimination-impacts-on-people-living-with-dementia-national-survey-seeks-to-determine-how/