Galway ~ then / Almere ~ now
I recently finished Atul Gawande’s book Being Mortal, which was confronting in many ways, not least of which in the way that it dredged up a lot of memories from the last days of Dad’s life.
The book deals with problems of confronting and working with our mortality – old age and illness, what works and what’s important to a person in the last phase of their life.
If you know what’s coming, you may have time to deal with it. You may sit down and think about how you want to die, what should happen with your things, and with your body, and not least how you want to spend the last little bit of your life – within the limitations set for you by health, age and money.
My father had been in questionable health for at least the last 10 years, so had had plenty of time to think about his mortality and how he wanted things to be in those final days. But it was uncomfortable to think about the inevitable end, so he chose to ignore it (and hoped it would go away) – as do many of us.
The consequence of this was that I’d only barely managed to have a conversation with him about making me his emergency contact – even that was too loaded a subject. And as he lay dying, in the beginning barely able to speak at all and at last not even that – I had no idea what his wishes were.
So, I had to go by what I knew about my father and what I felt in my heart. And though I think I made the right decisions, I don’t actually know if this is really what he would have wanted, and that little nagging doubt haunts me.
I think I knew my father as well as anyone knew him. I knew his stories, his passions, his weaknesses. But even so, when you suddenly find yourself in a different country without a permanent roof over your head, having to make decisions about DNRs, it’s overwhelming to say the least.
Gawande talks in his book of the minimum acceptable trade-off – what makes life worth or no longer worth living? For instance one patient said that as long as he could watch TV and eat chocolate ice cream, life would still be worth living. So that’s the threshold his next of kin set when they were asked whether to go ahead with surgery. I had no such clear indications to go by, so I had to make my own. Contrary to my father’s mantra in his final days (“home, beer”), I did not think that a life where he was able to go home and able to drink beer would be enough. And it was doubtful even that would have been possible. He definitely wouldn’t have been able to go back to his old flat where he’d have to contend with a flight of stairs to get to his front door.
The thing is, although he was leading a pretty OK life for the past 10 years or so, it had already gradually started shrinking. He had no purpose, no close family or friends nearby and very little money. His health was poor. Once when he came over to visit we cycled very leisurely in to the town centre where I live, along typical flat Dutch bike paths. It’s a 4-5 minute bike ride. Dad had to stop twice. Not to mention he was always travelling with a miniature pharmacy. The only thing that remained to him was his music and his mind. And his Sundays at the Crane (which were indeed musically inclined).
This was a man whose only constant in life had been freedom, whose home – as cliché as it sounds – was wherever he chose to lay his head. This was of course for better or worse – travelling the world with your guitar, harmonica, a tent and whatever petty cash you made from busking hardly constitutes a glamorous existence. But it was the only life he knew. And I think on some level the freedom was worth the trade-off. It’s just that later in life he had to deal with the consequences.
The doctors had a conversation with me and Eirin about his health and his future. They told us that he had a 5% chance of recovery. They asked questions about resuscitation without being leading, but I could still tell that they thought I had made the right decision when I told them that they should not resuscitate him. I saw the look of relief on their faces. But as anyone who has been through a process like this will know, making a choice like that – one way or the other, is one of the hardest things you’ll ever have to do. And as the official next of kin, it was my decision and mine alone (though of course if my sister had disagreed with that decision I would have listened).
Even with The Decision being made, things were very fluctuating and uncertain for a few days. He never really got better, but he didn’t get that much worse. I was desperate and tired. I was emotionally overloaded. My days consisted of going to the hospital and essentially watching my father suffer, of nightly phone calls from the hospital with status updates, and moving around Galway with my backpack on. In a way our life in Galway was reminiscent of our father’s earlier life; travelling around not knowing where we’d be sleeping and relying on the charity of strangers.
One night when we were staying in a flat behind the church in Salthill and my sister was in the shower, I spoke to God. No, spoke is not exactly the correct term. I wailed, begged, prayed and parleyed. I bunched my fists, sobbed, gasped, hyperventilated and hugged the pillow as I rocked back and forth. And as snot and tears ran down my face and neck, I prayed for my father to be allowed to let go. To be free of suffering.
Even though I know my father would have been miserable in a home (as indeed he already was lying in the hospital bed), being dependent on others to help him – maybe even help him go to the toilet or help him eat, I second guess myself. I know he would have literally nothing left to live for except the occasional visit from us – if he could no longer play his guitar, walk around town, see his friends in the pub, but still I can’t quite shake that doubt.
To be fair, I doubt things would have gone much differently had I made different choices. So my troubles are not so much about the result as they are about the intention and my ability to speak on my father’s behalf. Had I staunchly proclaimed that any little bit of life my father could still have was sacred and valuable and begged the doctors to fight tooth and nail for his survival, the odds are overwhelmingly in favour of his still having died when he did. Everything in his body was failing. I believe he was surviving on sheer willpower. Because that’s what you do. That’s what he’d always done. Fight it. That’s one of the things Dr Gawande talks about in his book as well. How it’s almost hard-coded into our DNA – doctors and patients alike – to fight it. Too rarely we pause and reflect upon what we’re actually fighting for and if it’s worth it.
And even if there is a God and they heard my pleas, I do not think that my father died because of divine intervention or because I had asked for it. My problem is more that I asked for it. What kind of person prays for their parent to die?
I have all kinds of rationalisations and explanations for what I thought, felt, and did. And I genuinely think, from an objective point of view, I did what was best. I prayed for what was best for my father, I made the decisions that were best for him.
He died in a private hospital room, after having received a dose of morphine for his pain. He had 2 of his daughters with him. We sang to him and we held his hands he crossed the threshold into the next world. Was that a better death than a long(er) hospital stay, lots of rehabilitation, and eventually slowly deteriorating in some form of nursing home, where he wouldn’t have been able to enjoy the last little pleasures that were left to him? Unquestionably. And I am thankful every day that I was there when it happened. Even though it broke my heart it was so important and meaningful to be there in the moment, and I know not everybody gets that chance.
But the truth is, for all of my love and virtuousness, there was some small part of me that prayed for his release from this mortal coil for my own sake. I didn’t want to deal with the stress and uncertainty, I didn’t want to deal with the guilt of my father being in a nursing home and not being able to visit often, I didn’t want the burden of constant worry. When I prayed for him to be released I was also praying for my own release. And as much as I still believe it was the right thing for him, I struggle to forgive myself for the part of the decision that had to do with it being the right thing to do for me.
Are you there Dad? Can you hear me? Do you forgive me?