By Muriel Porter
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| At first my husband's Alzheimer's diagnosis just meant taking practical steps.(Illustration: Emma Machan (ABC)) |
I thought I knew how to grieve, how to say goodbye and move on. Until Alzheimer's Disease caught up with my husband.
Grief marked my life first at the age of five, when a beloved uncle died. But it was my mother's death when I was 13 that broke my heart. Then my father died just weeks before my wedding. I posted out "return thanks" cards for him in the same post I sent out my wedding invitations.
So I have always been confident that I knew how to manage grief and loss. Until now.
At first my husband's Alzheimer's diagnosis six years ago when he was 75, 41 years into our marriage, just meant taking practical steps.
A visit to the lawyer to ensure wills were up to date and get enduring powers of attorney drawn up. Organise guardianship documentation, advanced care directives. Ensure my name was on all the utility accounts. Buy some books to understand this insidious disease. Watch for changes in his health and behaviour.
And hope for the best.
I was watchful, careful, and often anxious. In the main, however, life continued on as normal. We travelled overseas, enjoyed local holidays, entertained friends and were entertained, went to restaurants, to films, and to church, went for long walks as we always had, and continued hosting the family Christmas.
But relentlessly, the disease took its toll. Anything that required sustained intellectual concentration became much harder for Brian. It was the first casualty.
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| Anything that required sustained intellectual concentration was the first casualty.(Illustration by Emma Machan (ABC)) |
Patterns of a lifetime started to vanish
Called on to preside at the Eucharist in the sudden absence of our vicar — Brian is an Anglican priest — became very tricky for him, though he was not actually aware of it.
He consecrated the bread and wine twice and mixed up the order of the liturgy. This from a man who had presided at the altar regularly for more than 40 years, sometimes multiple times a week in his main life's work as a school chaplain.
The words remained firmly fixed in his mind, the pattern had left him.
I swiftly stepped in on future occasions, producing a neat little word-for-word service booklet and standing beside him at the altar to guide him through. That continued to work well for quite a while, and most parishioners were quite unaware there was even a problem.
Presiding at weddings was not quite so simple. At weddings missteps cannot really be tolerated, and the priest's wife can't easily oversee the proceeding in the same way. So wedding requests had to be gently discouraged. So too did funeral ministry.
A straightforward funeral for an elderly friend not long after his diagnosis nearly turned into a disaster when he lost the service booklets and became alarmingly confused.
Day-to-day routines at home thankfully remained manageable for quite some time, though increasingly anything out of routine became problematic. Entertaining family or friends gradually had to be abandoned, as Brian became easily stressed by change.
Our walks got shorter and shorter and became a real concern. What if he could no longer make it around the block? Who would I call on to help get him home? Neighbours? Ambulance?
And falls increased, sometimes out of the blue. He seemed to just sink down to the ground. No broken bones or injuries resulted, but the falls distressed him. We ended up driving even very short distances.
I lost a partner and a confidante
Brian's growing incapacity resulted in boredom and frustration for him.
Over his lifetime he had regularly devoured several books a week, but now he became increasingly unable to read anything at depth. Books piled up unread, as did longer newspaper articles. Television programs he had once enjoyed, no longer entertained him. Even long-favourite foods no longer pleased.
My role as carer became more demanding.
I had immediately taken over all the financial management as soon as his diagnosis was made, and increasingly all aspects of household management as well. I had been used to a husband who happily shopped, occasionally cooked, and mostly did the washing up. That had all ended but none of that really concerned me.
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| I was aware of an enduring sadness at all he was losing, and all I was losing.(Illustration: Emma Machan (ABC)) |
Much worse was my increasing anxiety, never more so than when I was away from home.
My mobile phone always remained close in case he needed me, or in case the personal alarm I had arranged for him to wear messaged a fall. He remained steadfastly resistant to the idea of occasional carers coming in to give me an anxiety-free outing.
And because of his decreasing powers of judgement, I could no longer confide in him. I had always shared with him issues arising from my own close involvement in church life.
He had always offered wise advice, a sympathetic ear and unquestioning support. That was no longer possible — he could no longer fully understand what I was sharing, and I was fearful he might inappropriately speak to others of confidential matters.
I was disappointed to discover that, apart from the loving support of my daughter and dear friends, there was no significant external support.
Medical help was resolutely in silos — the psychiatrist, the geriatrician, the GP, were all good but were quite independent of each other. There was no overall medical management. And as for trying to access the Federal Government's much-vaunted home help when the situation was deteriorating — that was laughable.
With the rate of Alzheimer's increasing markedly in our society, it is surely time for each diagnosed case to be allocated a social worker or nurse to assist the primary carer navigate the complex systems to get the best outcome all round. It was such a difficult and lonely road.
With my caring role all consuming, there was little time for reflection at any depth. In the background, I was aware though of an enduring sadness — sadness at all he was losing, and all I was losing.
Rapid change as the pandemic bore down
A sudden acute medical episode that pushed the Alzheimer's into a rapid descent brought a huge change. Brian had to be admitted to residential aged care.
Initially there was no time to reflect on what this all meant. The first weeks of his move were overwhelming, as I grappled with the enormous task of not only trying to settle him in his new environment, but also to complete the necessary paperwork and handle the complex financial issues. I was appalled at what was required, and worried sick by the costs involved.
We had thought we were well set up for retirement; we used to delight in the amount of discretionary money we now had at our disposal — something we had never before experienced.
Now, the costs involved in high-quality aged care made a mockery of that. How was I to cope? Would I need to sell our loved family home and downsize? With all these decisions, I was run ragged.
I had no time to reflect on what was happening, and besides, it all happened during the first COVID-19 lockdown. I did not have ready access, except by phone, to financial advisors, or even my friends and colleagues.
I could not even physically go to church, let alone slip into a church building for quiet meditation.
Living without closure
My daughter is my salvation. Though so busy with her own professional life and young family, her support is steadfast, from home-cooked meals to helping manage the nursing home move and the continuing care of Brian once there. Hers is the shoulder I cry on as the continuing management of Brian's complex needs, even in residential care, frequently overwhelms me.
I am now fully aware I am alone after 47 years of married life. The cumulative grief of the past six years has now hit me powerfully. I find myself crying and crying and crying, particularly as I leave the sad nursing home visits, as I walk the paths and visit the places we have always shared.
I am experiencing full-blown grief, the grief of widowhood, yet I am not a widow.
My husband, the man I had married, the man who has shared my life for more than four decades, with whom I have children and grandchildren, has effectively gone.
Yet I have not been able to say goodbye or be comforted by the religious rituals and societal customs that give us closure. How I have always hated that over-used word, but now I can see its power. I have no closure, and without closure, no way of moving on.
I grieve like a widow
Brian is still part of my life. In Melbourne's stage 4 lockdown, I can visit him only infrequently, and then only because I have wrangled a "compassionate exemption" to their strict no-visitors rule. I am glad I am able to do so, but he is now, in many ways, someone else.
Our relationship is so utterly different. I care for him like a dependent child.
How on earth am I to live with this never-ending grief, this living death, in a future that now stretches before me as a grey muddle?
And my deep sadness is not just for myself, but for him.
His life is now so reduced, in so many ways. Reduced to the confines of an aged care room, with his daily needs managed by strangers. Where the prospect of fish and chips for Friday lunch, a short walk in the facility courtyard, and attending some of the centre's activities are the highlights of his week, surpassed only by occasional phone calls and longed-for visits.
Each time I leave him in anguish at the diminishment he has suffered and agonise afresh at what more I should or could do for him.
In short, I am a wife and partner still, but not as I have known it or could possibly want it. I live like a widow, I grieve like a widow, but cannot mourn.
Blessed are those who mourn, for they shall be comforted, as the Bible says in St Matthew's Gospel. But where is the comfort for those who grieve but cannot mourn?
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When Alzheimer's Disease came for my husband, I was left like a widow who cannot mourn
