by Mary Moody
My first priority when I arrived home this time was to catch up with the family, so I drove over to Mudgee to celebrate Ella’s seventh birthday. Aaron and Lorna had come a long way since the tense period of their initial separation, and things had really settled down, especially from the children’s perspective. In some ways I have also adjusted to the change, although there have been financial and emotional ramifications that have worried me deeply. Anyone who thinks that separation and divorce are the easy way out is kidding themselves.
After the trip to Mudgee, I had to get organised for a four-day photo shoot at the farm. The cookbook I was writing had an entire section devoted to living and cooking at the farm, and both the publisher and designer wanted to feature the place in the book. We threw the doors open to a stylist, a photographer and a home economist; the plan was to cook and photograph at least thirty-five of the featured recipes over a period of four days. They also asked if we could gather as many of the family members around as possible, so they could be captured at a typical, full-on family lunch. Miriam flew from Adelaide with the four boys especially for the occasion. It was an enormous undertaking, but a great deal of fun.
The home economist made lists and shopped for all the recipe ingredients. The entire length of the farmhouse’s central hallway was soon filled with neat stacks of food, sorted into piles according to the recipe and in order of preparation. Our daughter-in-law Simone, who was doing a part-time chef’s course at TAFE, wanted to be part of the action, and her contribution proved invaluable.
I have a variety of cooking options in our kitchen at Yetholme. There’s an old wood stove that has both an oven and cast-iron cooktop; there’s a gas cooktop that also has a wok burner; and there’s a large, modern electric stove. All of these appliances were going at full burn throughout the shoot. We cut and sliced and diced and mixed and made everything from banana custard to David’s favourite recipe for san choy bao.
The four boys, all hollow legs, had been told to keep out of the way. They hovered on the back verandah like hungry magpies, taking in all the wonderful aromas from our test kitchen. As each recipe was completed it was ‘arranged’ by the stylist and then photographed under natural light. When each shot was completed I carried the cooling food back to the kitchen, where it was promptly devoured by my eager grandsons. It was hilarious. They hoovered down broad bean salad, a vast tiramisu, a roast leg of lamb with all the trimmings, roast pork and crackling, scones, roast chicken with stuffing, melon and ham, salad Niçoise and a platter of rich French cheeses, all in the course of one afternoon. They had no concern for the order of service; desserts coming before main courses wasn’t a problem for them, only that the food kept rolling off the production line.
The family lunch was a triumph, with all of our grandchildren jammed around our long dining table – except for Isabella who, sadly, was having a bad episode of stomach problems, and was in Katoomba Hospital on a rehydrating drip.
Work such as this, where the whole family gets involved, is always enjoyable. Even though I had explained to the children what it was all about, they didn’t really understand it fully until the book was published and they giggled to see themselves as part of it – lighting the dining-room fire, setting the table and climbing the big old cypress tree in the front garden. I am constantly amused and reassured by my grandchildren’s blasé attitude towards my work. During the time I was trapped in Sydney, doing The Catch-Up, I had regular phone conversations with my Adelaide grandchildren because it was impossible to visit them while I was working such a gruelling schedule.
Chatting to the oldest, Eamonn, I asked how things were going at school and what sport he was playing, then casually asked if he had seen my TV show.
‘What show?’ he asked.
‘Hasn’t Mummy told you I’m doing a daily television show?’
‘No,’ was his uninterested response. End of topic.
Miriam later insisted that she told the kids about the show, but of course they would have been at school every day when it went to air, with no chance of ever seeing it. To me it was a very healthy sign that he didn’t give two hoots if his grandmother appeared on daytime TV. He was much more interested in knowing when I was next coming down to Adelaide to take them all out for a slap-up yum cha lunch. Any delusions I might have had about being famous were instantly, and quite charmingly, squashed.
22
Alzheimer’s is a condition that people joke about. It’s such an obvious target for humour, involving older, powerless people who are confused and vulnerable and can’t fight back, but there’s probably also an element of fear in the jokes. For it’s a disease that results in total helplessness, as tangled fibres in the brain gradually strangle every last shred of memory, killing brain cells, and eventually shutting the whole body down. It’s horrific, in every possible way.
Sometimes it seems to me that having found my sister, Margaret, after forty-nine years of separation, I lost her again within a moment. As a result of her Alzheimer’s she has forgotten everything. Everything. She was born in August 1933, twenty months after her brother, Jon. Their mother, Veronica, took her own life when Margaret was six years old – nobody really knows why.
Jon and Margaret’s lives were certainly brighter when Muriel entered the scene as their stepmother, but by the time the family returned home to Sydney from Dad’s American posting, they were under a lot of stress. Muriel was caring for two teenagers as well as two children under the age of three. They lived in a small, upstairs flat with a glassed-in verandah which served as a bedroom for Margaret, and me and my brother Dan (fourteen months younger than me) when we arrived on the scene. A teenage girl and two babies in one small room. The family had no car and no labour-saving devices; there was a dark, dingy laundry in the basement equipped only with a gas copper and wringer. Mum was soon exhausted from having two babies in rapid succession, and she lost interest in housework and keeping in touch with her friends and family. Dad was drinking heavily and she was drinking quite a bit too, in spite of her successive pregnancies. It was a recipe for domestic disaster.
Dan was an acute asthmatic in the days before drugs had been developed to control breathing difficulties. He was also highly intelligent and highly strung. I remember lying in bed at night listening to him rhythmically banging his head against his pillow and moaning until finally, exhausted, he fell asleep. I can’t imagine why Mum didn’t come to comfort him – I recall her telling me in detail about the nights she sat up with him when he was in the throes of a severe asthma attack, and I’m sure she did. However I believe his almost nightly need for attention was ignored and I have been told that his ‘head banging’ could have been a sign of emotional neglect.
I was a healthy and cheerful baby, but from a very young age I was certainly frightened by our father’s frequent explosions of anger, and often lay in bed listening to my parents’ protracted and heated rows in the next room. Margaret must have been even more acutely aware of the situation. She was called on to help my mother with ‘the children’, and I believe that before and after school she was my primary carer while I was a baby and toddler. Then she left. On her eighteenth birthday she simply packed her bag and left the family forever, never looking back. Doing her best, I am quite sure, to forget.
At first, Margaret lived with the family of a student friend from East Sydney Tech, where she had recently started a three-year course to qualify as an art teacher. She found a part-time factory job and supported herself until she graduated, then she taught art in various country schools until leaving for the UK. She went on to Canada where she continued to work as a teacher while furthering her qualifications, completing not one but two master’s degrees, and eventually being awarded a PhD in art education.
She made no attempt to contact the family, no doubt fearing that if she called our father might answer the phone. She knew how angry he was at her leaving, because there had been a terrible family row on the day of her departure. So she effectively closed the door on
further communication.
In most circumstances a person who had reached Margaret’s level of Alzheimer’s would have been placed in a care home of some description. They would have been given a lot more anti-anxiety and sedating drugs to make them more passive and manageable. However, Margaret’s husband, Ken, is devoted to her care and does all he can to ensure she remains at home for as long as is possible.
Once I had accepted Margaret’s condition and the distressing downhill spiral of the disease, I determined that I should spend as much time staying with her and Ken at their farm as possible. I have a busy schedule at the best of times, with two walking tours a year and always a book on the boil, not to mention my own garden and family. However it became obvious to me that I could be of tremendous assistance, not just in a physical or practical sense, but in being able to lift the mood of the household and provide some on-the-spot respite for Ken, who is gradually recovering from his own medical problems. David has been fantastically supportive of my desire to spend time in Canada because he understands my deep emotional connection with my sister.
From my perspective I am grateful that I am able to go and help as often as I can. I try to go for six to eight weeks at a time, several times a year. In the not-too-distant future I will probably just go and stay indefinitely. My belief is that my sister had a pretty poor start to her life. Her mother’s death, her alcoholic father and the distressing atmosphere of her family home forced her to virtually run away as soon as she was able. As her only sister, I feel if I can help to make this part of her life a little happier or more comfortable and secure, then I will do everything in my power to do so.
23
By the time my cookbook was nearly finished, I was concerned about Margaret’s deteriorating condition. I had regular phone conversations with Ken at the weekends, and also exchanged emails with Margaret’s best friend, Fran, another teacher who had travelled with her to Canada in the 1960s. Both of them warned me I would be shocked when I saw my sister again, that she had lost a lot of cognitive function and had started suffering from anxiety, a normal factor in advanced Alzheimer’s cases.
Here it was, late October, and so much had happened my in life and in hers. I was apprehensive but also looking forward to seeing Margaret and Ken again and getting a handle on the situation. I spotted them immediately as I came through the arrival doors at the airport – Ken is very tall and stands head and shoulders above the crowd. Margaret was by his side, looking pale and slightly troubled. I threw my arms around them both and made eye contact with her. It was obvious to me that at that precise moment she had absolutely no idea who I was. Her puzzlement could no longer be disguised.
It was amazing that Ken had continued coping at home with Margaret’s illness. He had begun taking her two times a week to a daycentre for dementia sufferers, and that gave him a brief respite from her round-the-clock care. Margaret was less and less able to help with the basic food preparation for their evening meal, so they now went out to dinner sometimes three or four times a week. Family members and friends invited them over for meals on a regular basis, but it was becoming increasingly tricky because Margaret found it almost impossible to sit at a dining table waiting for a meal to be served. She was restless and anxious, and required medication to settle her down when she became agitated.
Since my departure the previous Christmas, a series of trained carers had been coming to the house to help bathe Margaret, start the dinner and manage a few household chores. This set my mind at rest somewhat, knowing that Ken was getting support and that Margaret was so well looked after. She had gained weight since my last visit and was looking a little neater and tidier. I realised that before the carers came on the scene she had probably not been showering or washing her clothes very often, and that routine grooming tasks such as nail clipping and hair cutting had been beyond her.
The carers were warm and efficient. I decided it would be a good idea to follow them as they worked with Margaret, to pick up tips on the best way of managing her. It’s very confronting for a proud, independent woman to suddenly need help getting into a bath or to dress, and I didn’t want to offend her or overstep the mark. Up until now, my relationship with my sister had been affectionate but not intimate. I realised the time had arrived to step over the line and take a different role as one of her carers, and I was more than a little apprehensive.
The first night the carer arrived while I was cooking dinner. These days Margaret wanted to get into bed almost as soon as the meal was finished, as she could no longer sit and relax in front of the television. The bedroom was her refuge. So after dinner I followed Margaret and the carer down the hallway to get organised for a bath. While the hot water was cascading into the deep spa in the ensuite we started looking through the drawers for some clean pyjamas. Each drawer was in a state of disarray. There were handbags and unopened mail in the sock drawer, and shoes in the underwear drawer, and when we finally found the drawer containing nighties we also uncovered a cat bowl full of mouldy cat food. I couldn’t help laughing, although the implications were frightening. The chest of drawers reflected Margaret’s total confusion. I realised I would need to start sorting through her personal effects to try to restore at least some semblance of order. I took it upon myself to sort through her cupboards and wardrobes on the mornings when she was at the daycentre, and it was also agreed that I should get her into a hot bath at least four times a week.
After her relaxing hot bath, Margaret fell happily into bed and was asleep within moments. I joined Ken in the family room, watching television, and he updated me on Margaret’s circumstances. They had seen a specialist several times who at the last visit had recommended increasing Margaret’s daily dose of a medication that helped cognitive function. However her agitation was intensifying and the specialist wanted to prescribe various drugs to calm her down. To sedate her. Ken deeply opposed the idea of drugging Margaret to make her docile. This had always been one of his main objections against sending her into a care facility. He had visited a few such homes, and every time he was confronted by patients sitting, passive, staring vacantly into space, apparently drugged to the eyeballs. He also knew in his heart that Margaret simply wouldn’t be happy living away from home, and that she would become even more confused and anxious.
‘I know she would hate it, and so would I,’ he said. ‘I’d be lonely here without her. I’d really miss her.’
I had to do whatever was possible to help Ken achieve his aim of keeping Margaret at home for as long as possible. I realised that inevitably it would become unsustainable, but I had no idea when that moment would arrive. Until you have walked down the path of Alzheimer’s, it’s difficult not to find such uncertainty daunting, but after a while, it becomes normal.
As Ken and I chatted, Margaret suddenly appeared in the doorway, bright as a button. Her face was still so expressive, with her large green eyes and captivating smile. She joined us for a few moments, then wandered away again. Back to bed. Then up again for another wander. Once or twice she emerged with several layers of daytime clothes over her pyjamas. Two pairs of slacks and three cardigans. I gently persuaded her to peel off the layers and coaxed her back to bed.
I discovered the pattern of their nights together. Ken would fall asleep in his big recliner chair in front of the television. Margaret would get up and down restlessly and come looking for him. Eventually he would go to bed, usually after midnight, and she would settle for a couple of hours and then start wandering again. His sleep was constantly disturbed by her night ramblings, and they both got their best rest after 6 am. I rose early, but let them sleep late. Their closeness was very touching.
Twice a week, we dropped Margaret at the daycentre. I used this free time to do some more work on the final edit of the cookbook and try to restore some order around the house. One day, Ken and I spent three hours doing nothing but sifting through her things; it was quite an adventure uncovering bits and pieces she had filed and hidden away in strange places for years. T
here were small bundles of cash and mail that had never been opened and cheques that had never been presented at the bank. There were household items from the kitchen cupboards and even an empty wineglass with the traces of a good red. It was at the back of the sock drawer. There were letters from friends, letters from me, half-eaten bags of sweets, and a few sketches done on one of the art group days. I felt as though I was invading her personal space, stepping into her private bewilderment.
I also went through the wardrobe. Margaret always preferred very plain, good-quality blouses, slacks and jumpers. She’s not a frilly girl at all, and owns very few dresses or high-heeled shoes. I realised most of the clothes hadn’t been washed in quite some time. They were not dirty, as such, just rather stale-smelling where they had been worn and hung again at night. I gradually washed every item, discarding those that were frayed or had holes; I made small repairs and replaced lost buttons. I enjoyed setting her clothes to rights. It was satisfying and I also somehow felt a connection with her through the lovely things she wore. It was as though I was gaining a greater insight into my sister, who she was and what her life had been like all those years before we met again.
The carers didn’t work weekends, so we decided it would be a good idea if I gave Margaret her regular bath. Even though she had always preferred to take a shower, the carers had discovered that the hot water really soothed her. I ran a bath in the ensuite adjoining my bedroom rather than in the deep spa. I filled the tub with hot water sprinkled with fragrant oils and then went looking for Margaret, who was wandering yet again. When I suggested a bath she looked unimpressed.