A little goodbye, every day

There is a kind of goodbye that almost no one warns you about. Not the goodbye at a graveside or in a funeral hall, but the goodbye that begins while someone is still sitting right next to you. For my father, it started long before he died.

My father had dementia, Alzheimer's. Bit by bit, the man I knew disappeared. Not all at once, but in a thousand small moments. A name that would not come. A look that lingered a little longer before he recognised me. And one day the realisation that I had already been saying goodbye for a long time, without ever calling it that.

It was not always like this. As children we drove to a campsite in Ermelo almost every weekend, the five of us. My brother, my sister and me on the back seat, the dog usually all the way in the back on top of the cases and bags, my parents up front. Not everyone from that back seat still walks alongside the rest of us today, life has taken its own turns. But in those moments we were simply a family, and that stays ours.

What the illness does

This illness does not only destroy the person it strikes. It is also crushingly heavy for the people who still can and must care. Toward the end my father no longer slept normally, at most sitting upright in a chair. He would not lie down anymore, not even with medication meant to calm him. He was constantly searching for the exit, and constantly searching for food.

Not because he was given nothing. He was cared for very well, first at home and later in the nursing home. That searching for food came, we think, from somewhere far in the past. He grew up during the war. Back then, if there was something to eat, you had to be quick, or it was gone before you got home. The illness had taken almost everything except that: the urge to make sure you are not too late.

Once he reached into a pan of boiling water with his bare hand to take out a potato. You would think something like that hurts, that you pull your hand back. He put the potato straight into his mouth, before anyone could step in. In moments like that you see how far a person can drift from themselves, and how helpless you are standing beside them.

The hardest choice

In the end he fell and broke his hip. Then came the question I would wish on no one: to operate or not.

We decided not to operate. On the advice of several doctors and specialists, and because the reality was that my father was far too restless to stay still, sitting or lying down. An operation and the recovery after it ask exactly that, and he could no longer do it. We accepted that this meant he would die. A few days later he was gone.

It was one of the hardest things in our lives. The thought alone still makes my hair stand on end and sends shivers through my body. What if? Those two words stay with you, even though I know we made the choice with all the love and all the information we had. Maybe that is part of it. Maybe "what if" is simply the price of caring about someone.

My mother

I lived a two hour drive from my parents, so I saw my father far less often than my mother did. The weight she carried, day after day, is hard to put into words.

I was not alone in it, either. My brother was there for my father, and he is still there for my mother now and then. I am grateful to him for that.

And once he was in the nursing home, she was suddenly alone, from one day to the next. No one left to care for, because that care had been taken over. She went by several times a week, for the laundry, until even that became too heavy. Cutting his hair, that she kept doing. But the silence in the house was never filled again.

My father died years ago now. My mother is still here. Sometimes I pick her up and she stays with us for a weekend. The bustle of a family is a little too much for any longer stretch, but a weekend is, as she puts it herself, lovely and tiring. Tiring in the good way.

And myself

The fear that the same thing might one day happen to me is certainly there. I cannot hold it off. We can do so much in medicine, but preventing or curing this is still beyond us.

At least my father is back with his sister now. She had Alzheimer's too, and on top of it another illness that ended her life. I do not believe in a god. But if there is such a thing as a spirit world after all, or some kind of life after death, then I hope he is content with the choices we made.

Why I am sharing this

I am writing this for everyone going through the same, or who has been through it. To let you know that saying goodbye to someone you love is sometimes a process that begins while they are still alive. That every day you take a little more leave of the person who, in my case, helped raise me.

That slow goodbye does not make the final loss any smaller. But it also means you keep loving all that time, you keep coming, you keep caring, you keep looking. That counts. And once the silence arrives, what you were together remains. The memory of who he really was, before the illness took over, deserves to keep a place. That is the one I hold on to. For my father, and for my mother.

Johan
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