The long goodbye

Grief is a very profound experience. My grandmother passed away almost three years ago, and we had been losing her slowly over many years before that, as dementia slowly stole from her every precious memory she once held dear. It has been about a decade since she was fully herself, and yet last night, I awoke in the night and sobbed because I still miss her. I hope I always will.

Dementia can seem the stuff of nightmares; before knowing any sufferers, there seemed something terrifyingly insidious in a disease that steals the very identity of its victims. Moments of lucidity in a sea of confusion giving glimpses of a person much loved but rarely there. Torturous self-loathing at the many petty frustrations caused by the limitations of a diseased mind. A shared joke being a shaft of hope, a taunting but fleeting moment of precious connection in a relationship that is faltering and fading as pathways in the brain are eroded forever.

As dementia took hold, Granny made her home on a carousel of memories that was slowly shrinking and spinning ever faster. The endlessly repeated thoughts, turns of phrase and stories that she could still safely stroll through were her only refuge, as the rest of the world whipped past her in a confusing blur. We would jump on a perceptive comment, one from outside that monotonous cycle, hoping it was a sign of improvement, but knowing deep down that her only progress would be into oblivion. We would try to coax her from the roundabout, hoping to guide her safely down a crumbling pathway before it was eroded forever, but that was wishful thinking. There came a point at which she was simply no longer able to validate shared memories, they had become ours alone. She lived in a world we couldn’t possibly understand because it was formed not from any recognisable reality but from disjointed fragments of past realities glued together with desperation.  

The emotions of missing her while she was still here were hard to process. The living breathing person who shared a physicality and a few personality traits in common with my warm, creative and strong grandmother was both her and yet not her. We couldn’t mourn what we had lost, because she was not yet gone, but we couldn’t spend time with Gran either, because she wasn’t really there any more. We found ourselves in a strange limbo and one that I was ill-equipped to deal with. Her dementia frightened me. Selfishly, I saw my possible future in her and sprinted desperately through my own precious memories, breathing them in, clinging to their solidity even as I watched her floundering.

But she also gave me great hope; even as the disease consumed her mind, Granny’s unshakeable positivity and kindness remained. Although her mind and body faded, her smile was a constant. Although she couldn’t remember the branches of her ever growing family tree, she long retained a sense that we were somehow hers; we could still feel her love and show her our own. Although she would not remember that we had visited, the emotional glow from spending time with loved ones would stay with her and sustain her in the strange world she made for herself inside her ailing mind. I wish I had known more about dementia and been less afraid of it, because the woman we loved was still in there and sometimes photographs, music, smells, spending time in the garden or visiting old haunts would help her to connect with shared emotions or simply bring her joy. Much of the fear I had of her illness was my perception of what she had lost, when I should have taken more time to appreciate what remained, to visit her in her new reality.

Gran’s funeral was a heartfelt tribute to her and I think she would have loved it, all the family gathering round her, as we so often used to do in her home. After years of missing her, we could finally mourn her, and I had never before attended a service where the love in the air was so palpable. The relief of being able to savour our precious memories of her and to laugh and cry over them was almost unbearable. While she was ill, each of us had bottled up our anguish at watching her slow decline; it had somehow seemed obscene to talk of missing her while she was still alive, but we had missed her so often and in so many ways.

Gran was not just an old lady who rambled in confusion. She was a child who lost her father when she was young, a wartime teen, a young teacher, a woman in love, who kept the sweet and touching letters my grandfather wrote to his fiancée, a member of the church choir, a mother, a farmer’s wife, a talented embroiderer, a loving friend, someone who delighted in meeting strangers. To remember her only as she was in her decline would be to dishonour her dreadfully.

There are so many ways I wish to be more like her. Gran’s hugs were never cursory or insincere; she would gather me up tightly in her arms and plant kiss after kiss on my forehead and I knew she truly meant every one. She always made time for each of her eight treasured grandchildren; even when we piled into her bed at 6am we would be welcomed with boundless love and enthusiasm. She encouraged us to use our imaginations and would make treasure hunts and take pretend trips with us around the world. She was an excellent cook and a keen local historian with a beautifully tended garden, and she genuinely sought to share those passions with us; she knew, as I often forget, that inspiring a child is far more beautiful than uniformly chopped carrots, unthumbed family photo albums or pristine rows of flowers.

Despite impacting so very many lives (one in every six people over 80 suffers from it) and its cost to society, not only emotionally and socially, but financially (for every person living with dementia, the annual cost to the UK economy is over £30,000), dementia research has limited funding and too few clinicians and researchers working to fight it. It is one of the unfortunate causes that is tainted by taboo; far easier to make light of memory loss and confusion than to face the terrifying reality of clumping tau proteins and the build-up of amyloid plaques, which kill the nerve cells in the brain and cause hippocampal shrinkage and ultimately whole brain atrophy. Nobody wants to imagine their brain wasting away but that is what is happening to 50 million people around the world.

It makes me sad that Gran never confided in us about her failing memory. She bore the burden of that fear alone, while we all hoped desperately that it would simply go away, that it would somehow resolve itself, that perhaps we were imagining things, that perhaps she was just becoming forgetful. I spent the disease’s infancy in denial and its later stages filled with guilt, as I realised the physical reality of its progression. There is still such reticence to discuss mental illness in any of its guises, be they dementia, depression, eating disorders or anxiety. Until we can overcome that sense of awkwardness, we won’t be able to face them and help put a stop to them. I live in hope that there will be progress with halting dementia before another generation faces the grim reality of losing their brain tissue. And if there is not, I hope at least that there will be greater understanding, openness and acceptance in society to help them through it and to value each individual as they are, disabilities and all; to look past what has been lost and see what remains.
Facts and figures taken from the Alzheimer’s Society and the World Health Organisation: https://www.alzheimers.org.uk/info/20027/news_and_media/541/facts_for_the_media  http://www.who.int/mediacentre/factsheets/fs362/en/