by Mary Moody
Fedema wanted to vist her relatives in Vancouver, and had organised to take some time off while I was around. I thought it was a great idea because I worried that she would burn out with the constant demands of caring for Margaret.
In the few years since our reunion, Margaret has gradually lost her language skills. She no longer had the ability to find the right words and so she lived in a cone of silence. Sometimes, very occasionally, she attempted a conversation, but it was heart-wrenching to watch her floundering, gesticulating with her hands to express what she was desperately trying to convey. Sometimes, I could pick up a sense of what she was telling me – word associations provided hints and clues that helped me, in turn, to find the right words to respond. But just as often the words came out in a jumble – some words were not words at all but some strange dialect – so that all I could do was nod and agree.
Every so often, but increasingly less frequently, Margaret would come out with a totally lucid sentence or an expression completely appropriate to the situation or the discussion that was going on around her. These were the cruellest moments of all, because it’s then we were reminded that Margaret is still in there somewhere, trapped inside her damaged mind and still capable of knowing and feeling. It’s easy to fall into the trap of believing that a person in the last stages of dementia is a mental vegetable. That they are incapable of any comprehension or reason. Childlike and mentally defective. They certainly are not.
David was the recipient of my darkest thoughts, and I used my emails to him to record some of my gloomiest moments.
Margaret has been up and down. I have been bringing her into my room for an afternoon nap (to give Ken a break) and now she wants to sleep in here all the time which is not a good idea (from my perspective – also from Ken’s) so I had to wrangle her into her own bed and stroke her off to sleep. I can say it’s easier looking after all eight of our grandchildren at once (including Isabella) than caring for Marge. It’s the greatest tug of love I have ever known. More tomorrow.
She has no concept of space. She can’t sit down on a chair without being backed up and lowered down. She can’t stand without being helped up. Getting in and out of the car takes fifteen minutes. When we walk she pulls to the left – one side of her brain isn’t working – so she would end up in a ditch if I wasn’t constantly pulling her back onto the path.
Sometimes she just rests her head on my shoulder and sighs. It’s awful – beyond awful.
I cannot begin to tell you how tragic this all is. Please don’t worry so much, darling. It’s just that when things happen that move me deeply I have nobody to tell but you. Every day is a bit different and for me the knowledge that deep inside Margaret knows what’s going on makes it so much worse. There’s nothing she can do about it – just live it. Just imagine if you had forgotten everything and felt lost all the time – that’s how it is.
But I also tell him the bright and funny things that somehow help make the whole difficult time more bearable.
Tonight we had dinner at Fran’s which was lovely, but difficult as usual. She’d made pasta, which Margaret wasn’t managing very well. At one point Fran asked her, ‘How do you like the pasta, Marge?’ ‘B minus,’ was the reply. We fell off our chairs laughing. Old teachers never die . . .
Laughter is of paramount importance for family and carers dealing with Alzheimer’s. It’s not that we laugh at Margaret herself, because we don’t. We know she would laugh just as heartily if she could stand back and see some of the situations, although I know she would also be appalled to find herself in this condition. We laugh because it breaks the tension and allows us to share the sadness in a lighter vein, just for a moment. We all have to go on living and have some brightness in our lives even though Margaret’s life and grasp on the world is shrinking, shrivelling before our eyes.
Apart from being a wonderfully warm teacher, a highly qualified academic and a champion of art education in Canada, my sister Margaret was also a fine artist. I grew up with just one painting in our house that she left behind when she fled the family all those years ago. It’s a street scene in Darlinghurst, Sydney, just near East Sydney Tech where she studied art before completing her Dip. Ed. to become an art teacher. This charming work now hangs in her brother Jon’s house in Warialda.
On one of my visits to Vancouver Island, Ken took me down into the basement to show me a timber framework that Margaret had built to store her unmounted artworks, and I was astonished at the tremendous variety of styles and materials that she had used over the years. There were oils and acrylics and watercolours, charcoals and line drawings and woodcuts, calligraphy and collages and lots of experimental works. Some paintings were very dark and dramatic; some light and full of movement and colour. She painted scenes and people and villages in France and Italy and old buildings in the UK and rustic farm scenes, including sketches of Ken at work in their garden.
I was enchanted by the images she had produced, but by this stage Margaret had lost interest in her art. She had stopped painting and her studio was a riot of disorder. The floor was covered with boxes and bags and the desk was thirty centimetres deep in artworks gathering dust. It was a pathetic reflection of how disordered her mind had been as her condition had gradually deteriorated. She had spent so many happy hours in this studio, working away on her various creative projects. And now it was a muddle.
Every Wednesday is art group day, and even though Margaret no longer paints, Ken takes her to the lunch each week as an outing and to keep her in touch with her former life. This time Ken suggested we should host the art group at their place and I thought it was a great idea, although Margaret would probably retreat during the painting and talking part of the proceedings and emerge only at lunchtime.
I made soup and we contributed a roasted chicken. The other women brought all sorts of savoury dishes, salads, meats and platters of fruit along with cakes and slices. In the past I have made pavlovas for these gatherings, and it always ends up being a debate about whether the recipe is Australian or originally from New Zealand. One of the group is a New Zealander, needless to say, and she and I have also disagreed about the origin of pikelets. It’s highly entertaining.
I told the group of my dilemma over Margaret’s artwork. I was concerned that even though the basement and studio were dry, the paintings would deteriorate badly if just left the way they were. I needed advice on the best way to conserve this precious aspect of my sister’s life. The group sprang to life with offers of help and suggestions about ways of protecting the paintings: folders and portfolios and special paper that preserves the paint and dustproof boxes. They also suggested we make contact with a former colleague of Margaret’s who still had a connection with the university where she taught, who might know of a way the paintings could be preserved as a collection.
Ken called Margaret’s old workmate, who immediately expressed interest in the idea. He decided to come out the following weekend to look through the paintings and give us an opinion. I was spurred into action. I looked at the studio and quite honestly couldn’t think where to start. I wanted to restore a sense of order and harmony, but I didn’t want to strip it bare, to take away Margaret’s imprint.
I started sorting through the artworks, putting them into piles according to the style and the material used. I felt a bit strange invading my sister’s private space, yet again, although this time it was like rifling through a wonderful treasure trove. There were some exquisite miniatures and a collection of ink drawings of cats which had been done for a children’s book that was never published. I just loved them.
As I dug through the layers of precious works mixed up with debris I found some astonishing things. For decades, Margaret and Ken made Christmas stockings for all the members of the family, and I found plastic bags stuffed with all sorts of treats intended for the stockings – she obviously bought them, hid them in the studio, then completely forgot about them. The dockets, still in the plastic bags, dated back four years, which must have bee
n a critical time for her memory loss. Just as I found in her bedroom drawers, there were unpaid bills and uncashed cheques and unfinished letters and photographs all jumbled together. Most of her more recent artworks were unfinished.
It took me three days to restore order. The bookshelves, groaning with volumes of art history, were dusted. I found a copy of her PhD thesis and examples of various educational programs she designed while working at the university. It was like looking down a long corridor into her past life; that huge part of her life when I didn’t know her and she had no knowledge of me. There were pieces of art I loved so much I just wanted to frame them and take them home, and Ken kept suggesting I should take whatever I liked. But I couldn’t bring myself to take a single thing. I felt uncomfortable with the thought of removing anything from her studio while she was still here, wandering in and out from time to time. To me, it was still very much her special place, as though she might one day walk in again, sit down and pick up a paintbrush.
On the weekend we were visited by Margaret’s old friend, who greeted her tenderly; she smiled broadly in return, and for a moment there was a flicker of recognition. I showed him the works I had sorted in the studio and also the ones I had carefully wrapped in the basement. He was most impressed by her body of work – I suspected her fellow academics didn’t realise she had such an active life as an artist outside her day job as an assistant professor.
Her friend suggested that a selection of Margaret’s works should be included in a large exhibition at the university gallery the following year. He believed it would be appropriate to make a special feature of Margaret, as the exhibition was to celebrate the anniversary of the art education department where she worked for so long. There would be a catalogue and a tribute in it to her, which I could help to write. I was thrilled. Ken was thrilled. In such a short time our problem about caring for her works had been solved and the bonus was that Margaret would be recognised for the talented and dedicated woman that she had always been.
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It had been nearly three months since I was at home and David and I had an urgent need to spend some time together after what had been a hectic and, at times, harrowing year. In among our heartfelt exchanges about Margaret’s condition, more personal and loving emails were flying back and forth, a reflection of the strength of our new relationship. David even started doing something I would never have thought imaginable for him – sending me sexy emails about his plans for my return. He’d stocked the pantry and cellar with good food and wine and he was proposing we lock ourselves up at the farm for a few days and just have fun. This was so unlike the old David; the work-driven, self-absorbed David. He’d become so much more communicative and romantic that I almost wondered if he was drawing on some film script for inspiration. But I wasn’t about to quibble. I was thrilled by his enticing words and it made me hunger to jump on the plane and head home to be with him.
This desire was counterbalanced by the knowledge that in leaving I also had to say goodbye again to Margaret and Ken. I wasn’t worried about them in any immediate sense as I knew they were now very well cared for and that their physical health was not fragile as such. It was just that I had an appreciation of how much moral support I was able to offer them during what was easily the most difficult time of their lives. I knew how Ken’s spirits lifted when I was there to spend time talking to him and listening to his poignant reminiscences of his life with Margaret. I also knew that Margaret became more animated and lively when I was around. Just having one extra pair of hands to help made a tremendous difference.
We had a lovely last evening meal together and then for the first time Margaret didn’t come to say goodbye at the airport because it was a night flight and she was already tucked into bed. I said goodnight, and gave her my usual gentle face massage as she drifted off, and I reminded her that I was leaving and wouldn’t see her again for some time. She didn’t seem to register this information at all.
I hugged Ken and promised to return as soon as I could, and dashed for the little plane to Vancouver city. The long, tedious flight home allowed me plenty of time for reflection and I thought constantly about Margaret and the quality of her life as it was at that moment, and then into the future.
I am aware that a decade ago I would have been a keen advocate for euthanasia for anyone in Margaret’s situation. When you view people’s circumstances from a distance, using intellect rather than heart and emotion to make judgements, then mercy killing of people with advanced dementia may seem an acceptable, even desirable, option. But from where I now stand, up close and totally involved, the thought of ‘putting her out of her misery’ is abhorrent to me.
There are many levels to this argument. I feel strongly that if Margaret were in any position to make the decision for herself then she would undoubtedly opt not to continue with her life. Margaret has always been an intensely private, self-sufficient and independent woman. She has carried with her the scars of her sad childhood and teenage years and risen above all these obstacles to create a happy and fulfilling life for herself. She has enjoyed a successful career and marriage and she lives in a beautiful home environment that is very much of her own making. She has a wide circle of good friends and a small circle of very dear friends; she has always fostered warm relationships with Ken’s family and she has enjoyed travelling and music and art and literature. She can’t participate in any of these things any more. She has been reduced to a shell of her former self. A frail and addled person who can only muddle through each day with a great deal of physical assistance and support and love from those around her.
That’s the crux of it: love. Margaret is still very much a loved and valued member of her family, and I am quite certain she still feels emotions such as love as well. It’s obvious to me that she feels frustration and confusion and even anger at times because she has enough awareness to know that something completely out of her control has taken over her body and her life. Yet when she smiles, or reaches out a hand, or puts her head on a shoulder, or gives a spontaneous hug, there’s no doubt that the loving Margaret still exists inside that shell.
There are all the legal and ethical questions, of course. Who makes that decision about ‘if and when’ another person should die? Margaret is certainly in no state of mind to make any decisions at all, let alone life-and-death decisions. Do the husband or wife or children decide? Do the doctors decide? Does a panel that includes family and members of the medical profession decide? I would have to say no to all of these options. It’s just not a decision anyone can make for anyone else, regardless of the situation.
I’m not anti-euthanasia per se, but many aspects of its implementation disturb me deeply, and I think we are a long way from working through all the legal and ethical arguments to create a model that works perfectly in our society. Certainly I oppose it in situations such as Margaret’s, where she has lost cognitive function to the point where she’s incapable of deciding the time is right to die. Certainly I’m against it in situations such as my grand-daughter Isabella’s, where she has mental and physical disabilities that have made her childhood such a difficult and at times painful journey. She’s a child, and cannot make such a decision for herself, therefore nobody has a right to make that decision on her behalf.
There’s another feeling that never leaves me. In these sad situations, the people around the sufferer – the family and the friends and the close carers – have an opportunity to express their love and devotion in many wonderful ways. Looking after Margaret can be soul-destroying and exhausting and frustrating and heartbreaking. Yet, equally, it is often uplifting and heart-warming and tender and satisfying. When I sit on the edge of her bath massaging her arms and legs with soothing oils, I know I am giving of myself to her and making the quality of her life as good as it possibly can be under these distressing circumstances. I have learned a lot about myself through this experience. I have learned that I can be patient and slow-moving, which are not my usual qualities. I’ve always charged
at life like a bull at a gate. My children were all out of bed, bathed, dressed and breakfasted before they had time to think about it. I’m a speedy person: David calls me hyperactive. Caring for Margaret has taught me to slow down – I simply can’t hurry her and so, willingly, I surrender to the beauty of being her carer. Of slowly walking at her side, supporting her all the way, no matter how long the journey or how difficult.
I’m very scared at the prospect of Margaret dying. I’m scared that it will be drawn out and painful and, quite possibly, humiliating and frightening for her. But I don’t know what else to do but remain at her side as much as I can right through this whole awful business. I know Ken feels exactly the same way.
I’ve always believed that birth is a natural process and that we should resist medical intervention as much as humanly possible. The pain and difficulty of birth somehow prepares the parents for the pain and difficulty that must sometimes accompany caring for that child. Death is a bit the same way. It’s part of our life journey but, sadly, there is a lot of medical intervention that prolongs life and therefore makes that pain last longer than it should otherwise. We are trapped in this cycle. Without her medication I feel certain Margaret and others in her situation would be ‘demented’ in the true sense of the word. But perhaps they wouldn’t live as long – they would explode in a frenzy of anxiety and confusion and their descent into a coma would be much more rapid.
