Friends, daycare staff, an abundance of literature, and shared stories normalized my fears and provided guidance. They taught me a vital lesson about separation anxiety:

The more comfortable I was letting him go, the easier it would be for him.

But when it came to launching my parents at the end of their lives, that same communal wisdom wasn’t there. I didn’t know what to expect in those final days, hadn’t heard stories from my community of friends, and didn’t have articles full of strategies for coping with death at home.

How can we help each other nurture loved ones at end-of-life just like we do at start-of-life?

How do we share the wisdom of what it really means to help someone go peacefully?

If only the “sandwich generation” referred to eating some really good sandwiches.

Right around the same time that I was agonizing over leaving my son at daycare 15 years ago, my mom was diagnosed with Alzheimer’s. My mom and dad (Irish and Egyptian) had been residing in Mexico since retirement, living their best life. But given the circumstances, my dad needed help. We decided to move in together and create an old-school multigenerational household. After my mom died, my father’s health issues and overall functioning seriously declined. Lung cancer, surgery, and then a broken hip confined him mostly to a wheelchair.

At the same time that Covid hit, he began to need full-time care and I stepped back from work to provide it. I learned all sorts of new skills like how to transfer him from the chair to his bed when he was too exhausted to stand up. I purchased assistive gear like silverware with an angled, large grip to make it easier for him to feed himself. Then one day, too exhausted and weak to transfer to the toilet even with my help, his legs gave out from under him and he broke his shin and calf bones. He went to the hospital for an x-ray and returned home the same day to “recover” or so we thought. The following ten days leading up to his death brought a roller-coaster of emotions and experiences.

Separation anxiety struck in letting go of my Dad, too.

What I didn’t realize until that ten day journey was that separation anxiety would be a thing at end-of-life too. Anxiety about letting him go turned into questioning the medical team’s guidance about his prognosis and what kind of care he needed. I feared that I was harming him or hastening his death.

Even though the nurses that worked with my father were extremely savvy, there was no way to know when he first broke his leg that he would die ten days later. He wasn’t eating or drinking or communicating much in the first few days and I was told that was normal given the morphine he was on for pain; he would likely rebound soon. Then the language from the nurses started to turn, incorporating fair warning that this could be the end for him.

If theirs were the only voices, I might have just accepted that it was his time to go. But of course, for this thinker, I was rolling out alternative explanations in my head and also listening to the doctors in my family. Those voices were saying things like: “He doesn’t need morphine for pain management at this point and he’s so drugged that he can’t drink. He’s dehydrated. That’s why he’s declining. Stop the morphine.” or “He’ll die if you keep giving morphine. He could have more time left.” The nurses, on the other hand, were gently telling me things like: “If you take away the morphine, you’re going to take away his comfort. He’s near the end.”

This was the key moment, where my anxiety about letting him go could have messed with his comfortable, peaceful transition.

I had read Atul Gawande’s Being Mortal and philosophically believed in less intervention and more comfort at end-of-life. This was my dad’s philosophy too. But he was still Dad! Up until a few days ago he was delighted to tease me and the kids every day, still loved eggs and Chopin in the morning, and still raved about Wolf Blitzer, his favorite news reporter. The “die peacefully at home” philosophy hadn’t been made real yet.

In my fear about it not being his time to go, I worked with the healthcare team to experiment for 24 hours by seriously reducing morphine and adding other non-sedating pain relief. Ultimately, that failed and brought him much more pain without the gains, and we resumed the morphine until he passed a few days later. Somewhere in those sleep-deprived couple of days, I remembered what I learned when I dropped my son at daycare:

The more comfortable I was in letting him go, the easier it would be for him.

A post-mortem

It’s been some months since my dad died. Mostly, I feel really proud that I took care of him at home, walked him through those last days, and enabled my kids to safely witness this natural transition. It was very scary to watch him around the clock for days, his breathing sometimes stopping altogether and then starting again. I still have brief moments of doubt..did I do the right things? I still feel that stress in my body and have turned to Bessel van der Kolk’s book, The Body Keeps the Score, to work on getting back in sync. I’ve come to know that if we talk openly about caring for our parents in their final days, we can help our friends and children navigate this painful inevitability.

Who else has helped a loved one transition at home? How did you work through the fear of doing harm? How have you taken care of yourself since?

Karen McCain’s work in behavioral health and education has taught her that at the heart of every accomplishment is a quality relationship. At Salama McCain Consulting, she helps schools, community living settings, and families embed whole-system interventions and habits to manage conflict and flourish.