Caregiver’s Diary: Lessons Learned II

caregiver woman with older woman

This Caregiver’s Diary entry was written by my wife

My husband summed up his thoughts in the last Caregiver’s Diary on what he has learned about death and the dying over the last two years, as he lost his mother and father.  My father, Gordon, passed away on October 27, 2011, and has also been referred to in this Diary – the guy with the big white Cadillac, who never had to hang up his keys.   I agree with a lot of what my husband said, but my experiences with losing my father were somewhat different, and I have a few other thoughts to share:

Death Cannot Be Managed

My father was diagnosed with esophageal cancer in December, 2010.  He went through radiation, but never really got his strength back and died 11 months later. We met many lovely people during this period, the surgeon who put in Dad’s stent, his initial surgical oncologist (surgery was not an option) and his palliative care doctor, who ‘managed’ his case for the final months. She put him at ease, patted his hand, adjusted his pills, and reassured us about how his final days would go. There was a ‘system’ in place – so that when the inevitable final crisis hit, he would hopefully not go to an emergency ward, but alert some kind of palliative hotline. A nurse would arrive and administer to him from a kit full of drugs that would have been given to him in advance. My father was fuddled by this – as was I.  Were they planning to ‘put him down’ in his own apartment to the soothing strains of Enya?  We were too disturbed by this scenario to ask further questions, and had a coffee and donut instead.

As it turned out, Dad got a nasty cold, which seriously dehydrated him. The cold was treated, but the dehydration was not.  It  was missed somehow by the palliative care doctor. Dad weakened and fell in his apartment, couldn’t get up, and had to call 911 himself – from the floor.   An ambulance arrived and carted him off to emergency  – the one thing the ‘system’ had been trying to avoid.  He died there two days later.

So be wary of the ‘system’ – and take the word ‘manage’ with a grain of salt. It could go a million different ways at the end  – and usually does.

Never Leave A Sick Parent Alone In Emergency

You are their last best friend there – and like a comrade-in-arms, you must never desert them.  My Dad was brought in to a mad house, and my sister and I waited for hours until he could be treated. The doctor on call finally saw him at 3 am, stabilized him with fluid drips, and told us that a bed had been found for him in palliative care. We left at Dad’s own urging and returned the next morning to find that the bed had vanished, he was on a stretcher in the hallway, and he seemed visibly weaker. We stayed all day – spoke to the nurses, who assured us that he was stable, was being rehydrated, he had eaten his breakfast well, the palliative care doctor had been by and had actually signed discharge papers for him for the next morning.   Dad did eat his lunch with us, some of it, but seemed tired and napped mostly.  Again, we were assured that was the best thing for him.  So… we finally left that night to get a bit of sleep ourselves. Once home, I called the ward again, at 10 pm.  I was given every assurance in the world that he was stable and comfortable.

The call came at midnight – he was in distress. A ‘catastrophic event’ had occurred.  They weren’t sure what it was, but he couldn’t breathe and was failing. Did we want heroic measures taken?  …No. We raced back to the hospital in pouring rain and were told by a phone call, as we entered the emergency ward, that he had passed away 10 minutes before.  The oncologist on call did not know my father and was truly horrible.  A compassionate male nurse pulled us aside and told us about the last moments of my father’s life – he was with him and said that Dad was full of peace. That nurse was one of those angels that I believe present themselves at such times.  He saved my sanity.

For the rest of my life I will regret leaving my father that night.  So don’t do it. Tag team with family, call in friends, anything.  Don’t leave your parent alone on a stretcher in a hallway.

Get Past Your Own Fear Of Your Parents’ Death

 Losing my father was the greatest fear of my life. And when he was diagnosed with cancer, that fear went off the dial.  It prevented me from fully using the time we had left to really say everything we wanted. I am not talking about forcing Dad into touchy-feely conversations for my benefit. I am talking about taking any opening he might offer, and responding honestly in the moment. Until the last week of his life, we never even said the ‘death’ word. I think he could sense that it would unhinge me and was holding back to protect my feelings. But as he fought off his last cold, we sat together and he suddenly said, “I think I’m dying, and I want you to know that I feel absolutely serene about this.”  Big silence. “Are you okay with that?”  I remember that I wanted to burst into tears, run away to Paris, maybe, but this was important.  I told him that I wanted what was best for him, and that I believed in my heart there was a natural order to things.  It was a strangled response, but Dad was a scientist and liked the ‘natural order’ thing.  He seemed relieved. From that point on, we seemed to talk more easily and in his last few days, he told me stories about him, and my late Mom, about all sorts of family secrets and scandals. I couldn’t ask the questions fast enough and he laughed and cried and mused and remembered, and we had a really great time together. My fear of losing him had finally given way to my enjoyment of his company for whatever time we had left.

It’s A Huge Loss

For most of us, losing your final parent is a profound loss. You are an orphan. Don’t underestimate how hard it will hit you. You will want to call them, email them, run to them when life defeats you. And they will be gone.  And if you are childless, like I am, the feeling is even more curious. There is nothing to pull you forward into the future, and nothing grounding you any longer in the past. This feeling persists, so it’s important to reach out, cultivate friends, community, form new ‘family’ – anything that will start connecting you again to other human beings. I lost my bearings for over a year after Dad died and I’m just starting to get them back.

My parents and parents-in-law were part of the war generation, who are passing quickly. They have left me with a legacy of fortitude, self-reliance, and common sense. Their values were hard work, fiscal restraint, patience, kindness and accountability. They were far from perfect, but they were glamorous, and knew how to have fun. They danced, drank, smoked cigarettes, had fabulous music and made me laugh.

It was a privilege to have known them.