Volunteering for Alzheimer's
Until Terry Pratchett's diagnosis happened, Alzheimer’s had just been a crippling disease that I didn’t know much about.
I love giving up my time to volunteer for causes that I believe in. Although I've done my fair share of cooking for the homeless as part of a charity that I was involved with when I lived in the UK, I realised some years ago that all I ever did (apart from working with the animals my family has rescued) was sponsor my CRY child through the year, which doesn’t take up much of my time. I tend to be generous to an orphanage for girls over Diwali and Christmas, but again, that just means I shop for sweets and things, and drop them off.
When Terry Pratchett was diagnosed with Alzheimer’s, I was shattered by the news. That it should happen to the brilliant and unique mind that gave us the Discworld and everyone and everything in it, I thought, was a tragedy on top of a tragedy. He’s been one of the biggest inspirations in my writing life, and although he continued writing books after his diagnosis—in fact, he wrote right up until his death—I couldn't help thinking that it wasn't fair that he had to contend with Alzheimer's.
But until his diagnosis happened, Alzheimer’s had just been a crippling disease that I didn’t know much about. Having done some work in a rest home in Dunedin, New Zealand, I had come across patients with the condition in the past and interacted with them. I still remember cleaning a room in which an old lady slumbered, oblivious to the muted shades of the room, the maroons, and golds of the upholstery on the couches and sofas on which I wondered if she’d ever sat; as I went around the bed a frail hand with paper-thin skin gripped my own with a strength that amazed me. I looked up into an age-spotted face, wrinkled and sagging, and faded blue eyes brimming with tears. ‘I want my daughter’, she crackled at me. ‘I want my daughter.’
I straightened up and began to try to reassure her that I would get her daughter but she shook her head with vehemence, never letting go of my hand. The volume of her voice increased as she repeated over and over again that she wanted her daughter. I patted her head as I tried to make her let go of my hand and said I would go fetch her daughter. I remember running out of the room and going to find my supervisor, a nurse who had worked at the rest home for over 20 years. She shook her head and said to another nurse, ‘Give number 21 her medicines, Laura’, before hustling me off to do my work. I resisted, wishing I could make the woman understand.
‘She’s frightened, she’s upset, she wants to see her daughter’, I said, trying to stay calm.
The nurse interrupted me brusquely. ‘Her daughter’s at work. We can’t call her daughter whenever she wants her.’ I tried to protest but I was cut short and told to return to my work. When I went back into the room, the other nurse was coming out of it, and the woman on the bed was asleep; the drugs were clearly doing what they were supposed to be doing. I pulled a tissue out of the box beside her bed and dabbed her face with it; it was still wet with the tears she had shed and I remember apologising to her in my head. I knew I had failed her.
In less than a week, the old lady had passed away. I wasn’t there when it happened, but I did get told to remove her personal belongings and prepare the room for someone else. I badly wanted to find out if she had ever had a visit from her daughter before she had died and checked the visitor books. She had not. She died without ever seeing her daughter and I could have done something about that. I should have.
Sadly, that experience put me off doing any voluntary work with the elderly. In the years that followed, I ought to have done more, but I didn’t. I told myself I didn’t need the guilt when something went wrong, and I convinced myself that it would. Selfishly, I decided I didn’t have the time. I didn’t have the time to spend a few hours volunteering every week, I told myself, when I spent more time than that doing things for myself.
But all that changed when, one day, for no reason at all, I picked up the ‘phone and called a foundation that gives elderly patients with Alzheimer’s and other dementia – and their carers – a chance for a life with dignity. I heard myself offering to volunteer with an Alzheimer’s patient. They took my particulars down and then called me back. How would I feel, they asked, about going to the home of a patient on Saturday morning for a couple of hours so that her carer could have a break? I accepted their proposition and was informed that I would be visiting with the person who had been volunteering with said couple for the past two years. They assured me they wouldn’t throw me in at the deep end alone. I found my hand shaking as I hung up. What in the world, I asked my reflection in the faded gold-framed mirror above the console table in the hallway, had I let myself in for?
That morning I waited near a pre-arranged spot after having parked my car. My mind was filled with busy thoughts; white noise that tends to happen to me when I’m nervous, excited, or just overwhelmed. A white van rolled up and a friendly face looked out and said my name. I smiled back and got in. I was volunteering with K, a thirty-something advertising executive who gave up his Saturday mornings for the foundation. We barrelled along the road and eventually arrived at our destination, a large gabled house set back from the busy thoroughfare of the main road, bursting with trees and flowering plants aplenty, and with a glorious view of the sea.
The door was opened by a plump smiling old man in his mid-seventies or so. I was introduced to him and I walked into the house behind K, painfully conscious that I was going into someone’s home. The old homeowner made me feel welcome by asking me my name and about my vocation and where I’d driven from. Then he asked me if I was ready. I knew I never would be, but I nodded. He opened the door beside him and I heard her before I saw her; an incessant babbling like a baby but with no words. She was sitting by the window, her thick white hair hanging down her back and framing the sides of her face. She threw a cushion in our direction, which we all ducked, and her husband walked quickly to her and soothed her, petting the top of her head and picking up a comb he’d left beside her. ‘We were just doing her hair when you rang the bell’, he explained as he lovingly combed the tresses away from the sides of her face. I felt instantly like an intruder, watching something private and beautiful, something between these two people who were friends, had been lovers, who would be married until the day they both died. They had shared a life together, and from the photos on the wall and on the mantelpiece I could tell that it had been an amazing life; there they were posing by the Eiffel tower; there were children and grandchildren; there were two of their wedding day; there was a younger version of the woman who sat by her window holding out a cake, laughing. There they were playing in the snow with their children somewhere; there they were at their daughter’s wedding.
I turned around. He’d finished doing her hair now and had plaited it. She continued to shake and babble, her eyes darting around the room, to all our faces before she looked at him shaking her head. He kissed the top of her head gently as she shook. In a few minutes, he had taken his leave of us and left his wife to our care. The foundation was important, K explained because without it people like this couple were forgotten by the world outside. It would be too easy to become resentful of the person who was tying our life down, no matter how much we loved them. He said that the couple’s daughter took over for one whole day during the week, and on Saturday mornings the old man – we’ll call him P because that’s what his name starts with – had another little break to do his own thing, thanks to the foundation.
I tried to offer to go make tea (one kitchen is much like another, after all) but nobody wanted tea, and the old lady couldn’t really drink anything hot anyway, in case of an accident. So I sat beside her. I had envisioned reading to her perhaps, or talking to her – offering her some companionship and conversation – but I hadn’t envisioned anything quite like this. I didn’t know what to do and didn’t understand why K kept talking to her – often raising his voice to be heard above the babbling. I didn’t know if she understood him, or if she wanted him to talk to her. I stood up to stretch my legs when she grabbed me by the front of my dress.
I panicked, even as K noticed and came over from the other side of the room. ‘Just sit down’, he urged. ‘She likes you.’ I sat down again and she let go of her hold on my dress and took my hands in her own. She poked at my nails (it didn’t hurt) and then put her hands out to touch my face. I kept listening to K telling me not to move and stayed there as she touched my face with her hands, closing my eyes when her fingers were close to them. Then she touched my hair, almost gently. I opened my eyes and looked into hers and something passed between us; I don’t know what it was – but it was everything that made her – her – and everything that made me - me. I found it difficult to stop myself from welling up, but I did succeed as I didn’t want to cry in front of her or show her that I was sorry for her, but I am crying now as I type this.
She took her hands away but I put mine out and held her hands. She allowed me to, even as her upper body shuddered and her head nodded and shook. The babbles didn’t stop, but I was content to sit there and hold her hands, gently pressing them with my own from time to time. Eventually, her husband returned and she looked genuinely pleased to see him and babbled at him as he kissed the top of her head again and thanked us for letting him go out for his morning walk. He’d gone to a friend’s house afterward, he said, and had coffee there. He looked a lot better for having gone out as he put his arm around his wife and began telling her about how nice it was outside.
We said goodbye and left. I was quiet as K drove me back to where I’d parked my car. He told me that the couple we’d just visited had been married for 56 years. I gazed out of the window at the sea. Yes. I could tell. That was a lifetime’s worth of love I had witnessed.
When I got out of the car K asked me if they’d be seeing me again. I answered sincerely that it had been an eye-opening experience, and that I wanted to keep volunteering. We said our goodbyes and he drove off as I walked to my car.
I sat in my car for a while. It had been an intense experience, but it was a very fulfilling one. I don’t know what it is about what I did, but my soul felt filled up. I think when you live alone, as I did then, you forget that you have a need to be needed, and you forget, in a sense, what it feels like to do things for other people. Don’t get me wrong; I do plenty for my family and friends, but – nothing quite like what I'd just done. That moved my life on a whole other level.
So yes, I did end up volunteering for the foundation for a good long while, giving up a couple of hours every weekend to give primary carers a break. I made a promise to myself that no matter where I went in the world, I would give up some time whenever I could to be a better person. And on that day, as I succumbed at last to the tears and wept with my head in my hands, sitting behind the wheel of my stationary car, I hoped that someday, somehow, I might be loved like P loves his wife, because that really is love.