Dr John Gerrard lived with Alzheimer’s for more than ten years. Here, his daughter Nicci, an author, novelist and campaigner shares what she and her family learnt on their dementia journey

How was your father diagnosed? And looking back, were there early signs that he had dementia?

My father received his official diagnosis after he had done the standard memory tests and had a few sessions with the geriatric psychiatrist who would remain his doctor for the rest of his life. But in fact, the diagnosis came gradually, at home, with his family noticing how his memory was failing, how he was anxious. The forgetfulness which comes to all of us as we grow older shifted into something else: a more profound sense of being muddled, of being perhaps scared, as though his world had lost its distinct shape and its certainty. His mother had had dementia, and he was very like her, with the same eccentricity and great sweetness, and so perhaps we were alert to the signs.

How did you tell other people and what was their reaction?

It was never a taboo subject, though I think at first my father felt a kind of shame, and so let people know gradually (although of course they probably already knew anyway). But he had close and kind friends and most of them were unfailingly lovely to him, and to my mother. Some found it hard, awkward, they didn’t know how to behave, but that was rare. It was more important for my mother that they should know: she is a very sociable woman and needs companionship and people with whom she can share her feelings.

What happened after diagnosis?

Nothing dramatic, or not for some time. My father was a very stoical man: he believed that one has to bear what one is given. I think he was fearful, although he never said so, or not often. He accepted the diagnosis with a kind of wry grace, almost like a shrug at life’s ambushes. We had a family meeting shortly after and we all talked about it. His great fear was that he wouldn’t be able to care for people (in particular, for my mother, who for decades had been an invalid).  We tried to tell him that he had looked after everyone all his life (which was true) and now it was his turn to be looked after, and it would be our privilege to do so. We hugged him and told him we loved him. He was never a very demonstrative man but he became more so as the illness took a grip. His eyes would sometimes fill with tears and he would tell us that he was proud of us, that he loved us.

His anxiety expressed itself physically: there would be days when he would shake uncontrollably; others when he said he felt ill and would stay in bed. I think he would lie there in the darkness, waiting for the fear to lift. He didn’t just forget, he had very vivid, often paranoid false memories. He thought he was in trouble with the police or that he had crashed his car.

And then, bit by bit, he forgot that he was forgetting. Perhaps he became happier – or more tranquil – when he left that painful first stage of knowing you are losing yourself, of going into the darkness. And for about ten years, my father managed to have a good life, in spite of the fog that was slowly descending. He lived at home with my mother (who he adored and had been married to for 61 years by the time he died). They didn’t need extra help at first. He worked in the garden, watered the tomatoes, fed the birds, went for walks by the river, ate large meals with gusto, saw his friends (wonderful, loyal friends), his children and his grandchildren. His personality was never distorted by the condition, for which I remain very grateful: he was unfailingly modest, courteous, mischievous, patient, brave.

The year before he died he came on holiday with us to Sweden and swam in the lake, picked mushrooms and berries, had saunas and went to the crayfish party where he wore a garland in his snowy white hair. He went to Turkey with my brother and sister and the photos of him show an old and happy man.

But the last year of his life was a catastrophe. After a four-week stay in hospital when, because of rigid visiting hours and then an outbreak of norovirus, he was barely allowed to see us, he came home skeletal, immobile, incontinent, inarticulate and wrecked. For ten months he lay at home in a hospital bed downstairs, with a 24-hour carer, utterly powerless to do anything for himself. He was like a silent ghost and for my mother especially it was a time of sadness and also a kind of horror. He finally passed away in November 2014.

What were the main challenges you faced and when did they happen?

First of all, in the early days, to be patient, to be kind, not to get irritated when he repeated himself and when he forgot things and when he was tetchy, when he was horribly anxious. I think it’s hard not to attach a kind of morality to illness. At the same time it felt hugely important not to patronise him or treat him like someone who was simple. He was a clever and proud man, and sometimes I’d hear myself talking to him as if he was a child. I hated that in myself.

At the end, the challenges were more profound: to get enough care for him (we never could: he needed so much); to try to get him to walk again (we never did); to try and keep him clean and shaved and treat him with dignity; to try and talk to him; to spend time with him even though he didn’t recognise us sometimes. To remember he was still my father.

And then to remember that it was as hard for my mother as it was for him: she married him when she was 21 and I think that his slow dying wasn’t just painful, but hugely traumatic for her. And very lonely.

Have any services made a difference?

We’ve had terrific help from the GP, for the district nurses, from neighbours, from his consultant. But we were lucky enough to be able to buy in help – otherwise he would have had to have gone into a home and none of us wanted that. We needed (perhaps for us as much as for him) to have him in the house he loved, looking out at the garden he had created, at the birds that came to the bird table we put just outside his window

Have any particular products or gadgets made life a bit easier?

So many: hoists and walkers and wheelchairs and beakers and nappies. But more than these, I’d say music. And books: even when he was on the rim of death we would read poems to him.

Has your experience of living with someone with dementia changed your perception of it?

It has. It’s made me understand that it’s different for everyone. It’s made me understand that you need to enter their reality, not try to wrench them back into yours. It’s made me fear it. It’s made me understand what suffering and humiliation there is around the condition. It’s made me believe that even when memory fades and goes, a person is still there somehow, precious and human.

What lessons have you learnt and what advice would you pass on to other families?

That hospitals are hazardous. That you can never behave beautifully all the time and shouldn’t feel guilty about that. That it is good to tell people and share your suffering a bit. That it is important to ask for help and accept it. That the mind is infinitely precarious. That the present is to be cherished.

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