Three shades of dementia
No one would argue the fact that dementia is a most distressing condition for older people. Or that it is one with painful ramifications beyond those impinging on the sufferers, to affect those around them, who love them, and support them, and feel the loss of the person within the shell that they see as left behind.
And I don’t in any way want to minimise the impact of this condition on elderly sufferers and their loved ones. At the same time, it is interesting to find that there are some variations in views about dementia, and that these can perhaps be linked with variations in the forms of dementia being experienced, and how the effects of these variations might flow on to the families of people with dementia. Coincidentally, two very different accounts of maternal dementia appeared in consecutive Saturdays in October, in The Sydney Morning Herald’s ‘News Review’ section.
Lenke Wise holding her great grandson, at home
In the 6–7 October edition, journalist Adele Horin interviewed Stephen Judd, who for the past 17 years has been the director of HammondCare, which she noted as being ‘one of the nation’s premier aged care charities’ specialising in dementia care. And she was astonished to hear that, in his opinion, ‘his mother’s decade of dementia was probably the happiest time of her life,... [and] she had never needed a day in a nursing home. She lived her last decade in Judd’s home, with her husband, son, daughter-in-law and three grandchildren caring for her.’ As Judd acknowledged, “it’s not everyone’s experience, but if I had to say about my mother’s 80 years what was her most enjoyable decade, I would say it was the last. She was probably more expressive and less inhibited than in the 20 years prior; she was not worried about social graces.”
He painted a very different picture to the more typical scenario that appeared in the following week. Media personality Mike Carlton, who is based in Sydney, was anticipating with sorrow his visit to a Brisbane nursing home, to be with his mother on her 90th birthday. For him, “Alzheimer’s disease and the onset of nameless fears have hollowed out what was a lively and humorous mind. My brother tells me...there is every chance she will not recognise me...[and] if she does, she will not remember the visit five minutes after I have left.
“Her life has no quality to it. She has no knowledge of her five grandchildren and one great grandson. Once she was a voracious reader and a keen gardener and knitter, but all that is beyond her now and she is too frightened and confused even to turn on the TV....Her days and nights are spent lying on a bed in a small, beige room, staring at the walls and waiting to die.
“I owe her a lot over a long life...But, honestly, I shrink from seeing her again. I will find it hard, even surreal, to reconcile today’s frail wraith with the vigorous young woman [she used to be]. But I will bring her the red roses she has always liked, kiss her on a feathery cheek and tell her that I love her, and hope that there is a miraculous spark of the mum I once knew, even for a second. There must be hundreds of thousands of Australian families in a similar frame. If only there could be a better way to go when your time is up.”
Two very moving, and very different stories. And I can relate to both of them. My mother, too, had dementia for several years before she died at the age of 94. And yes, it was very difficult to see parts of her slipping away: gradually losing her skills in the cooking of all the delicious foods through which she poured her love into all of us, her family; her ability to manage her complex business affairs, to read, play bridge, hold a conversation. But we were very fortunate that – unlike some dementia horror stories that we had heard, of paranoia and aggression – she never lost her loving personality. And she continued to enjoy the moment, beautiful flowers, going shopping, being outdoors in the sun. And, right to the end, seeing any member of her family made her light up with happiness. For several years, we managed to live in adjoining houses, with assistance from carers, and respite days. And then, we made the big move from Brisbane where we had lived for many years, back to Sydney. And bought an apartment which we shared with her, and her wonderful group of carers, all amazingly warm and affectionate and capable women from Tonga. They brought with them a joyful respect for the elderly of which my mother was a fortunate beneficiary.
We managed for two years, and hoped that we could continue until she died. But she became too physically frail and – eventually – we found a nursing home close by for her. She had never wanted to be in one, but one blessing from the dementia was that by then she didn’t realise that she was in one. Surrounded by the familiar furnishings and pictures we were able to place in her room, and with our visits every day, she led a peaceful and contented existence there until she died a year later.
And my experience of her death, compared with ... from page 3 that of my father from cancer at the age of 79, definitely influenced my thinking as to which way I would prefer to die, in terms of the effect on my family. My father’s death, far too early and very traumatic after a year of illness, took me many years to recover from. With my mother, the goodbyes started as we gradually lost aspects of her as she broached her 90s; and by the time she died, we were prepared for it and knew it was time for her to go. We were sad, but not desolate. And that is what I would wish for those I leave behind. That they will know that I have lived a good and a long life, before gradually slipping away without causing anguish.
Curiously, now and then I have lovely dreams of my mother, as her old self. And in those dreams I believe that, of course, she was alright all the time. What was I thinking, that she has dementia? They are similar to the comforting dreams that I also have of my father, from time to time: where I ‘realise’ that of course, he’s not dead after all. I guess that all that that is saying is that we carry in our hearts, always, those who are dear to us, however they leave us.