On the road

Perhaps ‘On the way’ might have been a better heading. But it’s the same thing, really, as we all travel life’s journey, one day at a time. It’s apt for me today, as I return after a time away from home, in country Victoria. It was good to meet up with new folk and to be part of another family, if only fleeting.

When we are caught up in caring for a partner with Alzheimer’s it’s often difficult to have a break, to find a time when at least half your brain can be ‘switched off’. That was the way I was living for several years even after my wife Dorothy was established in a care facility. On edge, expecting the unexpected, is the best way I can describe that emotion. I’m sure many of my readers will understand that tension! Now, almost exactly one year after her death, as I and my family continue to come to terms with her absence in our lives, I still vividly remember those recent difficult years.

Those times still dominate my thoughts, even when I know they shouldn’t. Yes, I do know that the years to remember are all of those happy decades before. And, in time, I will learn to accept that. But, especially just now, I am finding it difficult to let go and live in the present. The recent couple of weeks away from home in the company of a friend and her family were good and I will, in time, relish those memories, too. But today I confess to melancholia.

Dorothy’s adult life was pretty much our combined shared life, and it shaped us – and our children’s formative years. As did our connection to our friends, neighbours, and workmates. But, as my readers will know, travelling the dementia road profoundly changes the present life, and role, of both the sufferer and the carer. Somehow, we learn to adapt, in various ways, to a new changed role and also to a different marriage relationship. For me personally it wasn’t, nor did it need to be, a burden or a chore. With love, all is possible. Our ability to share a prayer never failed us and was a source of strength even when we couldn’t share a church service because our lives were so deeply affected by health-induced stress.

Of all the behavioural difficulties, my ability to manage Dorothy’s new-found stubbornness was the hardest to cope with. Once she had decided, for example, to not get dressed in the morning, nothing would induce her to change from her nightdress. I could usually encourage her to wear a dressing gown and sometimes that stayed on all day! So, I learned a whole raft of cunning diversionary tactics to get around that stubbornness; like making a cup of tea or reading the newspaper or doing a crossword, or colouring a picture together, or just talking about something which caught her interest.

Few things in the activities of all of our lives need, necessarily, to conform to convention or habit, and a valuable lesson I learned was to “go with the flow” on the Alzheimer’s Road. Good advice, I’d say, to all Carers! After all, I will admit to having breakfast in my pyjamas sometimes…..