Living with Alzheimer's in a pandemic; Uncertainty is the only Certainty
Written by Gioia Bottesi
It was summer 2015 and I was having coffee at Pitcher & Piano, enjoying a clear and sunny day on Newcastle Quayside during a research visit to the city. I remember perfectly the phone call I received from my father on that afternoon; he was worried. He told me that he was unable to read the time when looking at his clock. He had been struggling with it for a couple of weeks and he felt that something was wrong. In that moment he needed to talk about it.
Over the following days I churned several scenarios over and over in my mind. I had my suspicions about the meaning of this neurological symptom and, now back in Italy, I overengaged with this type of thinking. Actual threat and actual uncertainty were there and they were at their very highest levels for all of us: my father, my mother, and I.
In October 2015 a clear certainty was defined: my father received a diagnosis of Alzheimer’s disease. Once this painful certainty had been confirmed, many uncertainties started to spread away from us: the speed of the progression, management of behavioural problems, appropriate ways to help him cope with emotional distress. I had many questions:
How long will it take him to forget everything?
How long will it take to deteriorate further?
For how long will he be able to understand who I am?
Will my mother be able to handle this? At what cost?
How largely will her life be disrupted?
How long will my mother be able to provide care?
Two of my paternal uncles had received the same diagnosis previously, but their symptom manifestation and progression were rather different. This increased perceived uncertainty and perceived threat. Making comparisons between them was difficult, counterproductive and distressing. Five years ago we started to lose my father, and this journey continues to this day.
My father has been living in a retirement home for the last 2 years. New uncertainties have emerged, but knowns and unknowns started to feel more balanced from this point on. The main outcome for my mother and I was that we were still distressed, but this was less uncertainty distress. My mother gradually adjusted to a new lifestyle, scattered with old habits that she had lost (going to the hairdressers, singing in the local choir) and new ones (visiting my father almost daily). I started to feel relieved because I knew that my father was in good hands, and because my mother could finally start to improve her quality of life after 3 years of enormous strain.
In February 2020 the COVID-19 pandemic spread to Europe, with Italy as the first significantly affected country. We all know the rest of the story. On the 6th of March visits to the retirement home were completely banned. New uncertainties knocked at the door:
Are the healthcare staff well equipped?
What level of safety is guaranteed?
Many staff are testing positive, who is looking after my father?
Who is helping him with food?
Will he catch Covid-19? When?
Will he survive?
If he catches it and survives, what will the consequences be for his health?
Does he know that we are not visiting him?
If he does, how does he feel about it?
Does he think that we have abandoned him?
How is he reacting to changes in the environment? How does he feel about the staff wearing masks?
Is my mother able to sustain this change?
As time has passed, some certainties have emerged:
My father seems to be completely unaware about what is going on
He has been swabbed around 20 times and he has always tested negative
The facility has reopened to visitors (one person at a time, in the garden, max 10 minutes)
“Uncertainty is the only certainty there is, and knowing how to live with insecurity is the only security” - John Allen Paulos
My mother has revealed herself to be one of the most resilient people I have ever met. I would say that she had to start making friends with uncertainty 5 years ago, which does not mean that uncertainty is less distressing for her right now, but she has come to accept that when living with Alzheimer's disease during a pandemic, uncertainty is the only certainty.
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