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Volunteering for Alzheimer’s

For a long time now, I’ve been wanting to give up some of my time every week to volunteering for a human cause. I do plenty of work with the animals my family rescues, but I realised that all I ever did was sponsor my CRY child through the year, which doesn’t take up any of my time. I tend to be generous to the Orphanage and Training Home 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 remember being absolutely 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. You see, he’s been one of the huge inspirations in my writing life, and I believe (with every single one of his other fans) that he should write until the day he dies. I remember moaning about it to a friend and saying that the world couldn’t afford to lose a mind like that before its time.

But until that happened, Alzheimer’s had just been a crippling disease that I didn’t really 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 past ten years, 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: going out, shopping, eating out, socialising.

But all that changed last week when, one day, for no reason at all, I picked up the ‘phone and called a foundation here 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?

This morning I waited near Santhome 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 Kumar, a thirty-something advertising executive who gave up his Saturday mornings for the foundation. We barrelled along the Marina beach road and eventually arrived at our destination, a large independent house set back from 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 Kumar, painfully conscious that I was going into someone’s home. The old home owner made me feel welcome by asking me my name and about my vocation, whether or not I was married (we do ask that question here; it’s not considered rude to ask a perfect stranger that, especially not by an older person asking a younger one), 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, Kumar 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 Kumar 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 Kumar 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 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 Kumar 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 us women. 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 really 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 to the beach for his morning walk. He’d gone to a friend’s house afterwards, 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 Kumar 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 Kumar 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 absolutely intense experience, but it was a very fulfilling one. I don’t know what it is about what I did, but my soul feels filled up. I think when you live alone, as I do, 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 this. This moved my life on a whole other level.

So yes, I’ll do it again, gladly. No matter where I am in the world, I don’t think I’m ever going to stop giving some time up every week to be a better person. And 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.

2 Comments

  • tvaraj 9th June 2012 at 9:48 pm

    The Almighty powers will bless you. 🙂

    Reply
  • lundunlass 9th June 2012 at 10:04 pm

    I think this is quite possibly the best blog post I have ever read. I’m sitting here crying and my boyfriend wants to know what is up and I’ve just been so moved by your writing. Your words are amazing.

    Reply

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