17 June 2010
Partners in caring
Except for this: I am home ALONE for the first time since A came home from hospital this time last year. Until today, except for one four-hour session each week when a Blue Care carer has come in to spend time with A while I go off somewhere, A and I have spent every waking and sleeping hour of the year in each other's company. And I have never in all that time been home alone. It has to be a testimony to our deep affection and great friendship that A and I have managed to get through this post-operative year without any eruptions that I can recall. But much of the credit for this has to go to him – to his easy-going nature, his willingness to accept change and his refusal to give up trying to get on with all those intellectual pursuits that have made him who he is. Even when, in the first few months after his release from hospital, he could not yet get to his feet without assistance, he would spend hours every day reading, relearning how to form letters and practising his writing, singing along to favourite songs and practising his speech.
This week A began a six-week program of rehabilitation at Eden Rehabilitation Centre. He'll go twice a week, for four hours a day. He's an in-patient during these sessions, so the program is covered by our health insurance. Focussing on 'Falls Prevention', the sessions include physiotherapy, occupational therapy and various other therapies tailored to meet the needs of the four people participating (three elderly women and A!) It's about a 15-minute drive for me to take him there, and the 8am starting time is a challenge for late-risers like me – though no problem for A, who easily gets up at 6am, which is what we both need to do to be ready in time. But except for one hour once a week, I'm not expected to participate in these 12 half-day sessions. So for most of A's time there I am free to do whatever I like. Today I decided I would come back home and just be here – alone.
Solitude has always figured high on my list of indulgences. The informally negotiated terms we agreed when A and I started living together more than 30 years ago included an acceptance that neither of us would give up following individual pursuits and chasing our own dreams. For A, this meant implementing a plan he was already formulating before we linked up, to give up his secure arts administration salary and return to freelance theatre work. We made sure to get a mortgage on our first home approved before A's resignation, because at that time banks were reluctant to consider anything but the male breadwinner's salary when making decisions about mortgages. Mortgage secured, though, A quit his job in administration and resumed work in theatre and scriptwriting.
Being 17 years older than me probably made it easier for him to give up work, but it was late in life to take on the job of running a household, especially in a developing country! Even so, A tackled that with dogged persistence and great good humour. His experiences dealing with plumbers in the Philippines, where clients were expected to buy and supply all the necessary parts for any job before work could begin, are worthy of a separate post! (In the end, the fact that our flush toilets functioned at all was due more to A's handiwork with bits of metal and plastic – and rubber bands! – than to local plumbing expertise.)
So I continued doing aid work – in the Philippines, Laos and Vietnam – and A continued to manage our domestic life. Sometimes this meant setting up house for a few months in a hotel room, with lots of negotiation about such things as better reading lights, additional pillows for reading in bed, a second desk for A! Inevitably, when the time came for departure there would be heartfelt farewells with staff, thanks mainly to A's being on such good terms with everyone. Cleaning girls would give us gifts, as well as vice versa, and we would find ourselves at weddings and other family events with the families of young hotel managers and others whom A had befriended. In one two year assignment, we never again had to stand in line at the state bank's currency exchange office after the girls working there adopted A as a surrogate grandfather.
Over the years of my various assignments, A has helped to train local scriptwriters for educational TV, helped senior secondary students in Laos to direct a film as part of their introduction to media, and made market ladies giggle in gleeful expectation every time he would alight from a tuk-tuk to shop for the week's provisions. Now, those same qualities that enabled him to deal calmly with situations that many his age (and younger) would have found trying are helping him to tackle the more stressful challenge of losing his ability to use language. He's a survivor, and perhaps most importantly, he is adaptable. Nor is he too proud to admit what he doesn't know or can't do. And he doesn't mind accepting help. All of that makes my role as caregiver so much easier.
Even so, in recent years we have both had to give up things that meant a lot to each of us. We've lost access to my good income stream a lot sooner than I had planned. A has lost his independence, self-reliance and the pleasure of participating actively in the upkeep of house and property. He can no longer take on the little building projects he once loved. And I know he worries about being a burden. I have had to give up work that I loved and the chance of a livelier retirement than I expected. But perhaps most of all for me, for much of the past year I have had to forego the occasional spells of solitude I enjoyed while travelling alone on short-term contracts, disappearing into my studio for days at a time or just being at home alone while A was out pursuing his own activities.
Now we live in each other's pocket, it seems. For both of us, that's a new, more conventional existence than what we were used to. Luckily, we seem to have got through this difficult year of transition to...well, who knows to what! One thing we've realised is that none of us knows what will come next in life. This year we have learned not to worry about that so much, and just to live in the present.
- I started this blog in 2009 when I became a full-time caregiver. My husband had been diagnosed a few years earlier with primary progressive aphasia. Over the next four years until his death in 2013, we went on a journey of discovery about this rare condition. My blog is about what I learned, how we both coped and how the journey deepened our love and appreciation of each other. Allen’s journey is over, but mine goes on.