A Long Goodbye: When Dementia Takes Someone You Love

14/05/2017 17:28 BST | Updated 14/05/2017 17:28 BST
Christian Martínez Kempin via Getty Images

Grief and dementia are strange partners. The person you love is dying in pieces, so you end up grieving in pieces too.

In the weeks before his death, you could probably count the words my grandfather spoke on one hand. By the end, he was incapable of making eye contact, recognising faces, asking for help or feeding himself. His daily routine was to stare into space in the care home until it was time for bed.

He had been diagnosed with vascular dementia about two years before. It all started with a series of strokes, which completely changed his personality, causing him to attack my grandmother.

My parents, to their credit, didn't try to shelter me when I asked questions about it. They told me how he had barricaded the doors and started raving about the Germans digging tunnels.

It sounds unbelievable, doesn't it? Like a caricature of an old soldier going mad. Because I hadn't seen it with my own eyes, it felt like an exaggeration. In the long-term, he was left damaged and docile - and difficult to care for - but by no means violent or hysterical. Looking at his blank expression when I visited him afterwards, it was almost impossible to imagine any malice coming from such a withered, sad old man.

He went into a geriatric mental health assessment unit, where he stayed for a few weeks to be assessed. Some days he'd be full of life. Once he was found in the garden, digging for something in the flower beds. The nurses left him to it and he eventually dug enough to uncover some sort of large, regularly-shaped stone. He seemed pleased with the discovery. I couldn't help but wonder if he was trying to dig into German tunnels.

After the initial few weeks in the mental health unit, my grandma tried to care for him herself, rather than 'abandon' him in a home. She cared for him at home for two years, watching him slowly deteriorate.

Without realising it, we began to grieve for him. It is known as 'anticipatory grief', when you begin to feel the pain of bereavement before someone has died, but no one explained this to us at the time.

One day my grandad fell and was unable to get to the bathroom in time. As my father and grandma were showering him, they noticed his leg was at a strange angle, hanging from his hip loosely like a pendulum. It turned out that his leg had broken, sheared off at the hip like a snapped twig. Dementia can affect how people feel pain - maybe that was a small blessing. He was in hospital for six weeks and never walked properly again. It was decided that he should go into a home full time.

Slowly, painfully slowly, the good days were fewer and fewer, and our visits mainly consisted of us trying to make conversation with someone who barely knew we were there. My grandma would dutifully feed him biscuits when we visited. A woman in the corner of the day room, with white hair that stood on end, screamed periodically like a crowing rooster. The nurses seemed kind.

I was 17, going on 18, at the time. My life was full of beginnings. I was learning to drive, taking my A-levels, thinking about university. But somehow, although in so many ways I was still very immature, I had a very strong sense that I had to visit my grandad. I had to be a part of him dying. It was uncomfortable, painful, frequently extremely boring, but I wanted to do it.

This might have been because of my other grandfather's death, when I was just 11 years old. It was extremely sudden. He had been physically fit, still playing golf and chopping down trees at the age of 70. No one expected it. He was diagnosed with angina, given tablets for it, then two weeks later he had a heart attack while playing Scrabble.

My parents dropped me off at a relative's house after the dreaded late night call and drove up to Cumbria in the early hours. I went to school the next day and everything went on as normal. I remember sitting in the car on the way home, thinking, "I should probably be crying." I didn't cry until about five years later, when a picture of him fell out of a family photo album.

So when my paternal grandfather's death from dementia was very clearly about to happen, I felt a deep compulsion to be a part of every bit of it. When he finally passed away, I asked my dad if I could come to the care home. He seemed surprised, but let me.

We picked up my grandma. I hugged her and told her I loved her - something I think I had never done before, at least not since I was a toddler. We went to the care home, where I decided not to view my grandad. I waited outside the door while my dad and grandma went into his room. I heard a long, heart-aching howl from her and I knew she was looking at the love of her life for the last time.

My dad came out to leave her alone for a while, and he told me that the nurses hadn't moved my grandad. He was in bed, curled up in the foetal position. He didn't look like he was sleeping, but he definitely looked at peace. I thought about how strangely appropriate it was that he was lying like a newborn child. If you wrote that in a novel, critics would call it 'heavy-handed'.

Later, the matron of the care home sat us down to talk about what to do next. As she talked, I let my mind and eyes wander. Through the small glass window in the matron's office door, I saw the funeral directors wheel a gurney out of the building and on it was a black body bag.

The last time I visited my grandad before he died, he hadn't spoken to us for days. Resigned, I had sat down beside him and tried talking about various things.

"Grandad," I had said, touching his arm. "I passed my driving test yesterday."

He tilted his blank, sagging face towards mine and suddenly broke out into a smile, like someone had pulled back a pair of heavy curtains to let the sunlight in. He didn't say anything, just looked at me - really looked at me, with eyes that seemed to understand - and smiled. Dementia is the longest and most painful goodbye, but that smile is the only farewell I choose to remember.

May 14-20 is Dementia Awareness Week. Find out more at and join the thousands of people uniting to fight dementia.