lzheimer’s disease, which afflicts over half a million people in the UK alone, is perhaps the disorder we most fear; the one that eventually strips away all sense of self. Recent research suggesting that the disease may even be transmitted during certain medical procedures has if anything deepened our alarm.
So can it ever be possible for anything positive to come of it, either for those who have the disease or for their loved ones? In my experience, it is indeed possible to find meaning and even peace amid the challenges and confusion Alzheimer’s brings. For my mother, Pat, and myself, her diagnosis with the disease marked the start of a journey we made together from what was a broken relationship to a deeply loving bond as the end of her life drew close.
Her diagnosis with the disease marked the start of a journey we made together
For the three and a half years my mother was in the late stages of Alzheimer’s, I kept a record of our conversations, learning how important it is to listen – properly listen – to and engage with people with the disease. In the midst of disintegration, my mother was far more attuned to the emotion and energy of those around, her including myself, than is often assumed possible.
When I was growing up in the west of Scotland, her behaviour made life at home a roller coaster. A former teacher of dance, she suffered from severe depression after my birth during the war, although her mental health improved when she later returned to her work. She was an anxious, troubled woman who today would probably have been diagnosed with bipolar disorder.
As a young child I was witness to her despair and violent outbursts, while the onset of my teenage years created further tension between us. I frequently suffered panic attacks as a child and the breakdown of trust between us continued into my adult life. In later years, having moved to London, I underwent intensive psychotherapy and trained as a therapist myself.
My mother was diagnosed with Alzheimer’s in 2000, aged 85, following increasingly unpredictable behaviour and worsening forgetfulness. My father, William, was in his late 80s and could not cope and I was the only remaining child, my younger sister Fiona having died of an alcohol-related illness in her early 50s. Despite our chequered past, I wanted to care for my mother: it was perhaps my last chance to heal our relationship.
Trying from a distance to arrange support while commuting regularly from London to Scotland was stressful, especially as her illness progressed: she would refuse to go to bed at night and frequently fell and hurt herself. In 2002 I arranged for her to go into a small, residential care home with dedicated staff, which was conveniently situated right next to her house.
I visited once a month, initially staying for long weekends but later spending longer periods in my old home.I still remember the first powerful emotional connection between myself and my mother. It was a year after she had moved into the home, when her attempts at rational speech were faltering and she was visibly weakened by repeated urinary infections caused by incontinence. Visiting her, I was struck by a feeling of deep compassion; she must have sensed this and immediately responded with the words: “You love me.”
I wanted to care for my mother: it was perhaps my last chance to heal our relationship
The moment brought us together in a new and affectionate way. The very next thing she said, completely out of the blue, was: “I’m a bad person”. Given our troubled history, I assumed my presence might have triggered guilt at some old memories. Rather than dismissing her remark as meaningless rambling, I held her hand and talked about our past, explaining that I understood she had done her best. Her eyes were bright and she was nodding as I talked: it was another healing moment, for both of us.
Although I was acting intuitively at the time, years later I discovered there were scientific explanations for our growing ability to communicate. As memory goes and speech is affected, people with Alzheimer’s have a heightened awareness of feelings conveyed through facial expressions, eyes and tone of voice – which would explain why my mother sensed my first feelings of compassion. Researchers at the University of California, San Francisco have also found that as cognition declines, the part of the brain involved with empathy becomes more active. Having sensed our feelings, sufferers unconsciously mimic us and reflect these feelings back to us – a process called “emotional contagion”.
These findings reflect precisely what was happening between my mother and me. Researchers at Bangor University have found meanwhile that despite the increasing loss of memory that characterises dementia, what is called “emotional memory” remains intact, which could explain my mother’s mea culpa. As her memory failed and she struggled for words, her focus was more on what she was sensing. She told me, “You have a loving face. I see it in your face. You have lovely hair, nice shoulders, lovely teeth.”
She showered me with compliments like this. At first I felt embarrassed by her directness but I learned to accept her gifts gracefully. In my desperate attempt to keep our dialogue going as the illness progressed, I searched for meaning in her utterances, which often sounded incomprehensible. I realised that when she couldn’t find the word she wanted to use, she might use another word with a similar meaning, or a metaphor often rich with meaning. “I will fill both cheeks” she once told me, and I interpreted this as her intention to nourish me, even at this stage in her life.
By trying to decode what she was saying, I was able to continue having meaningful conversations with her.She seemed to intuit so much of what I was feeling. One day I was looking round her room for a Mother’s Day card I had sent. It was handmade, with a design of roses on the front and a loving message inside. It was nowhere to be seen. I said nothing but my mother said to me, “the lost roses”. She had read my mind. Tears filled my eyes and I held her and kissed her.In 2003 she started to have intermittent altered states of consciousness in which she seemed to slip into another world. At one point she even said, “it’s difficult living between two worlds”. But she also told me, “I am at peace. I have no worries, no fear. Death is nothing to be afraid of.”
In this “other world” it seems she was free from anxiety and I gained great comfort from hearing this. During all this time, my mother was able to share her deepest thoughts with me and a new bond developed between us. Looking at me one day, she said, “I’ve never seen such love coming from anyone’s eyes”. On another occasion: “the stillness of deep love, I can’t find words to describe it.”
It seemed we were at last united in love and strangely it was her Alzheimer’s that had enabled this to happen. She died in January 2007, a day after my birthday – she had previously told me she didn’t want to spoil it – with me by her side. A few weeks before she had told me: “You talk to me. Nobody else talks to me.” Tears streamed down my face. She was a joy to be with. Of course other people talked to her, but not in a way that was meaningful to her and that validated her experience.
From my journey with my mother through Alzheimer’s I learned it is never too late to heal the past and that the disease can open our hearts to love. I believe the key to maintaining relationships with those who have this disorder is for us to truly engage in their world, rather than trying to impose our rational views on them. When we do this with integrity we can move on from fear and find peace.
My mother was absolutely right when she said, “We had a difficult beginning but we’ve had a good ending.”