Sweet Surrender (15 page)

In April, my cookbook was released, and I was caught up in a whirlwind book tour around the eastern states.
The Long Table
was a departure for me, as I'd never written an entire book about food before, or had the opportunity to share my family's favourite recipes in print. I love book tours, and this time I was speaking at a series of lunches and dinners where the restaurant kitchens had prepared meals from the book. The first event was at a very swish restaurant at Balmoral Beach, where I grew up. The restaurant is located in what was once our bathing pavilion, where we changed into and out of our swimming costumes just about every day in summer. It was a local crowd and I had a great time recounting food stories and memories from my childhood. It was pure nostalgia.

The tour had been divided in two because I had to break into it with a trek in the Himalayas which had been organised for more than a year. This time we were heading for a state in northern India known as Sikkhim, which is famous for its diversity of flora and forests of rhododendrons, then to Bhutan, a mysterious small kingdom that I had read about often, but never visited.

For the first time ever on one of my treks, it rained heavily, and this
made the climbing conditions cold and miserable. We were looking for rhododendrons but the mountain we were ascending was entirely shrouded in thick, damp mist. I had expected impressive scenery but this was like walking through pea soup. By the time we reached our summit, at an elevation of 4500 metres, the group appeared exhausted, damp and dispirited. We curled up in our tents very early. Just before sunrise I woke suddenly, hearing the bells of yaks as they wandered through camp. I poked my head out of the tent flap and behold, we were surrounded by the most spectacular snow-peaked mountains, with banks of rhododendrons beside us. Without hesitation I ran along the line of tents, waking up my sleeping trekkers. They emerged slowly, but their grumpiness evaporated when they saw where we were. The fog had lifted, the clouds had departed, and we had a 360-degree view. It was worth the aching legs and altitude headaches, we all agreed over a breakfast of hot oatmeal and omelettes.

In June, after the trek and the book tour were over, I felt a need to return to Canada to see how Margaret and Ken were faring. I could never have predicted my relationship with them would work out this way. I came back into Margaret's life as a rather eager younger sister, keen to re-establish a bond and to find out more about her journey over the last fifty years. Now I was a critical part of her support system during a long and devastating illness. Every time I went back I was apprehensive about how much further her condition would have deteriorated and how Ken would be coping. Yet I also had a strong sense of coming home. The spare room had become ‘my' room and I left behind some of my clothes and books and toiletries between visits.

The flight from Vancouver to the island was delayed because the airline was waiting for a late connecting plane from Toronto that had eight passengers scheduled on our leg of the journey. My mobile phone wouldn't kick in and, waiting on the tarmac, there was no way I could let Ken know of this last-minute hold up. I was worried sick about him hanging around at the other end, trying to cope with Margaret.

Eventually, more than an hour later, we took off. Sure enough, when I saw Ken in the arrivals hall he was looking extremely frazzled. There was no sign of Margaret. She had been unable to sit still and wait for my arrival, and she was pacing frantically up and down, gazing out of windows and looking very agitated. I went to hug her but she was just too upset to respond. She needed to go home, back to her safe and familiar environment. Strange places had now become alien and frightening, and crowds of people were an impossibility for her.

Of course, this is why Alzheimer's patients are seldom seen out and about in the community. Their nervous and irrational behaviour is deemed anti-social and they are kept away from the public gaze, partly for their own wellbeing, but also because of the embarrassment of dealing with their erratic demeanour. It was immediately obvious to me that Margaret had gone downhill considerably. While she looked physically very healthy, her eyes were filled with panic and confusion. Ken just looked exhausted. I felt desperately sorry for them both.

Back at their farm, we settled Margaret down with a sedative and shared a simple late dinner. Ken told me that they couldn't really go to restaurants any more because Margaret became impossibly restless. She would pace and try sitting down at other people's tables and picking up food from their plates. He needed six arms and legs to manage her. He was now on a form of chemotherapy and had very little energy. He had managed, however, to clean out his home office in order to make a large, comfortable bedroom for the carer from the Philippines who was scheduled to arrive in the near future. In my view, she couldn't get here soon enough.

This was my saddest and most painful visit so far. Margaret could no longer be dropped at the daycentre on her own. She grew far too agitated after Ken left and would try to escape, which could be extremely dangerous. She needed one-on-one attention; she required regular medication to calm her down and she now needed help going to the toilet. One of her carers, Bev, had been taking Margaret to the
centre, but I was more than happy to be her supporter while I was there, as daunting as the prospect was.

The aim of the centre was to provide respite for the families of dementia patients, and to help fill the sufferers' day with occupational therapy, some gentle exercise and relaxation, and a good hot lunch. The staff who ran it took a very positive approach, encouraging their clients to dwell on the cognitive function they still had rather than worrying or getting anxious about their diminished memories. Being so closely involved with Margaret over the last couple of years I can clearly see how aware she is that something is happening to her. I had always thought that people with dementia didn't suffer because they were blissfully unaware of their deterioration. Nothing could be further from the truth. Margaret definitely knows that her world is shrinking and her defence has been to withdraw, to say as little as possible and to desperately try to cling to some sense of normalcy.

Ken dropped us at the centre and we sat around a large table with twelve others, including some volunteer helpers and the trained support staff. The daily newspapers were spread out and morning tea was served, with toast. The team leader read pieces from the newspaper then encouraged discussion. The idea was to keep bringing the real world back into their clients' lives. Some of the group were very vocal and still quite capable of conversation. Some sat very quietly and seldom spoke. There were equal numbers of men and women; their ages varied dramatically. Some people appeared to be in their late eighties but three or four were relatively young – perhaps in their late fifties or early sixties. Sometimes they seemed able to relate to each other, sometimes they disappeared back into their own worlds. We went for a walk after morning tea then came back and played a game of boules, sitting in plastic chairs and directing the balls into the centre of a circle.

Lunchtime was difficult. Margaret could still feed herself but she was inclined to help herself to other people's drinks or lunge for food
from their plates. Not all of them were understanding. She also tried to bite into objects on the table. Each client had a painted pet rock with their name on it – obviously from one of the occupational therapy sessions – and this was used to mark their places at the table. Margaret tried eating hers and I noticed just in time; it could easily crack one of her front teeth. While waiting for the lunch to be served she also tried to devour a small bunch of flowers in the centre of the table. One of the other clients filled her pockets with cutlery, while another had to be coaxed to eat anything at all.

After lunch, a volunteer with a guitar and a bundle of sheet music arrived to entertain the group for an hour. He played old popular songs and everyone was encouraged to sing along or to get up and dance if they were so inclined. Margaret was mostly quiet until they started singing ‘Waltzing Matilda'. She joined in with a big grin – I was told she did so every week.

Spending a few days at the centre added to my understanding of the progress of dementia. It was sad to see how these gentle people had been affected and how it had completely changed their lives. It was still possible to detect their individual characters and personalities, and it was tough knowing that it was downhill all the way. No chance of a remission, let alone a cure. I can't help but worry about what the future holds for my lovely sister.

Ken had organised for the Alzheimer's specialist to visit during my stay so that I would have an opportunity to ask questions. It was pointless having a consultation in his office as he wouldn't be able to assess Margaret properly. He needed to sit for an hour and observe her in her own environment. This made a lot of sense to me.

He arrived with a laptop and made himself at home in the main living room, taking notes as we both gave him our views of how Margaret was managing. She was acutely aware that we were discussing her and
this seemed to make her even more anxious and agitated than usual. She tried participating in the conversation but couldn't sit still for long enough, and looked nervously around the room from one of us to the other. Her powers of speech were now quite limited, and when she tried to contribute she was left grasping for the right words. The sense of frustration and powerlessness on her face was heartbreaking.

The doctor recommended that we try a new and much more powerful medication to control her fretfulness. He suggested we double her daily dose of anti-anxiety tablets, and wanted to prescribe a powerful sedative at bedtime to try to prevent her night-time wanderings, along with another drug that he believed would stabilise her mood swings. It was true that since I last visited she had become much more difficult to manage. She was not aggressive but she certainly resisted getting up in the morning, and sometimes she actually wrestled with us, not wanting to be directed to the toilet or into the bath. One morning, when she was particularly upset, she turned on me in the bathroom and put up two fists as if she wanted to fight. I almost laughed aloud in disbelief, then she somehow realised what she was doing and capitulated, meekly allowing me to undress her and help her into the tub of hot water.

I asked the specialist what we should expect over the next twelve months. How would the disease progress and what signs and symptoms should we be looking out for? He told us there was no timeframe for Alzheimer's, and that each patient deteriorated at a different rate. However, he reminded us that Margaret was already at an advanced stage and said that we should anticipate a steep decline over the next year. Eventually, she would simply not be able to get out of bed and walk any more – not because she didn't have the strength in her legs, but because her brain would have stopped sending messages to her limbs. Her entire system would gradually shut down and she would slip into a coma.

We had to take Margaret to her GP to get the prescriptions recommended by the specialist. Once again she was aware that she was
the focus of the conversation and I got rather annoyed with the doctor who persisted in talking about her as though she wasn't there at all. He gave her no credit for comprehension.

The first morning of the new regime Margaret was knocked around very badly by the new drugs. I googled them on the internet and was alarmed to read about them in more detail. One of the drugs was designed to treat patients with schizophrenia, and it had some pretty nasty side effects. For Margaret the impact was immediate: she couldn't stay awake. She retreated back to bed and slept almost all day long. I managed to get some lunch into her, but she was so spaced out that it was almost impossible to get her to do anything. I decided to keep a diary to chart the effects of the drugs over the next two weeks.

At the end of the fortnight I rang the GP who had given us the prescriptions recommended by the specialist and read him some of the notes from my detailed diary. Magarets's intense lethargy had worn off after a few days, but the overall effect from my perspective was that Margaret's abilities had gone backwards, quite sharply. She had become incontinent, had stopped even attempting to speak and was having great difficulty walking, negotiating stairs and even getting into and out of the car. Ken and I agreed that instead of making Margaret's life easier and our task as carers less difficult, if anything the medication had made things worse. It had, literally, turned her into a zombie. I was greatly relieved when the doctor suggested dropping the new tablets, though he wanted us to stick to the double dose of calming pills and also the evening medication to help her sleep.

Through this experience I realised just how important it is for people in Margaret's situation to have an advocate. The doctors and the specialists really had no concept of what it was like to live with Alzheimer's twenty-four hours a day, seven days a week. They might see patients on a regular basis and visit them in nursing homes and other care facilities, but it is the families and the full-time carers who really have a sense of how the sufferer is faring. We knew that Margaret
was still very aware of her surroundings and that she understood a great deal of what was going on around her and what was being said. She had not, as some people suggested, reverted to infancy. Part of me was angry about all this. The foolish assumptions of people who really didn't understand. Like Margaret I felt frustrated. But I was not powerless, and I would continue to fight on her behalf.