Sweet Surrender (18 page)

After the French tour I had only a couple of days to unwind, and then packed up the house to head for Canada again. I hated packing up – stripping the beds and closing the shutters – especially as I had no idea when I would return to my beloved cottage. I had a few tenants coming and that helped, knowing that the house would be inhabited and not sitting cold and lonely all through the long winter. I yearned for those long visits I used to have, where I stayed for four or five months at a time, writing and sitting far too long in the sun drinking wine with my friends. They seem like a carefree, distant past to me now that my life involves so much trans-Atlantic travel. I don't regret for a moment my decision to do this, but sometimes I hanker for that lovely sense of freedom I had when I first escaped to France. I am sure there are many others in my situation, probably caring for aged parents, and feeling a little trapped again – just as they did during the years when their children were growing up.

Every time I leave Canada I find it hard to imagine how Margaret's condition could be any worse, yet every time I return I am shocked at her ongoing decline. I shouldn't be shocked because I am always forewarned, either by Ken during our phone calls, or by Fran via
emails. Unless you are there witnessing it, it's really difficult to visualise the progress of this disease, so when I leave I hold a picture in my mind of Margaret and when I return that Margaret has vanished and a new one has appeared.

The first thing I noticed, the morning after my late flight in from London, was that Margaret's anxiety had almost disappeared, which was a relief in some ways. She had lost that haunted and confused face – it had been replaced by a blank visage. She could still make eye contact and respond with a smile, even an occasional word, but for much of the time she was lost in her own world, staring vacantly into space. It was something Ken and I feared and finally here it was. She had lost the spirit to fight against the routine intervention that punctuated her life. Where once she would resist getting up in the morning, she now went along with it willingly, although her ability to do so had greatly decreased. She virtually had to be lifted in and out of the bathtub, and her arms and legs found it hard to cooperate when it came to dressing.

This new stage meant that Margaret could sit calmly and no longer paced frantically looking for something to do. She didn't move things around as often (where did my pillows go? I found them later in the freezer) and she didn't try to leave the house, mainly because she could no longer manage even a single downward step unaided and there are steps into and out of every entrance.

Margaret could barely put one foot in front of another when we wheedled her out of bed in the morning. Once she got going she could walk unassisted, but still very gingerly. She looked as though she was walking on eggshells. She no longer had spatial concepts so she couldn't judge where she was putting her feet or where she needed to position herself to sit down. She had to be guided in all these things. Indeed she needed assistance with every aspect of her everyday life. Waking, sleeping, standing, sitting, eating, drinking and going to the toilet.

She would lose her balance and needed to be supervised all the time. Four weeks before I arrived she fell in the night and broke her
arm. She didn't tell anyone about her injury and it was only discovered the following morning when Fedema went to get her up and saw her twisted, swollen wrist. The second night I was there Margaret fell out of bed yet again, and Ken, fast asleep, didn't realise for some time. He called out urgently for help; even though the house is centrally heated she felt quite cold by the time Fedema and I placed her back beneath the warm covers.

I wondered about Margaret's perception of pain. Why didn't she call for help when she broke her arm? Probrobly she was incapable of a normal response – not realising she should be calling out for help. It was very frightening. Fedema watched my sister like a hawk and I had to learn to be as vigilant when she was in my care. The most positive thing, from my perspective, was that Fedema had bonded with both Margaret and Ken, and had made a huge difference to their quality of life. She and Margaret now had a tender relationship and she managed the daily routine of waking, bathing, feeding and medication so well that Margaret remained calm and unflustered. Fedema was warm and affectionate, often sitting for an hour looking at books with Margaret and linking arms to take her for long walks so that Ken could rest and have a break. Margaret's clothes were immaculate, her nails were trimmed and her skin was glowing because Fedema massaged creams into her legs, arms and face after every morning bath. She could not be better cared for.

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.

 

 

 

But I also tell him the bright and funny things that somehow help make the whole difficult time more bearable.

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 been 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.