Lessons from the last days of my brother's life: What helped

QUINCY – In June, I called my brother, who had been in a nursing home for 12 years after a massive stroke, to ask how he was doing.

“Good,” he said. “I had a good day on Monday.”

He died four days later at the age of 82.

Losing him like that was a shock, even though I knew it would happen eventually.

Over a period of 34 years, I experienced the final days and death of my mother from cancer in 1990, my father from cancer and a stroke in 2009, and Steve, my only sibling, this year.

Despite all the stories I have written about death and dying since the 1970s, and despite the interviews I have conducted, death can still be very difficult to accept.

Losing a loved one who is part of your identity is such a personal, individual experience. For many people, it is still difficult to talk openly about the end of life, how to plan for it and what to do if it occurs.

Here’s what helped me the most

With every loss I learned something new.

With Mom, we learned that sometimes doctors will suggest a treatment that other doctors won’t help and will likely cause more suffering. She refused the operation.

“I thought I should suggest something,” the surgeon explained later.

“We’ll see what tomorrow brings”…until it doesn’t happen anymore

At the age of 96, my father, who ended each day with hope, also knew, “We’ll see what tomorrow brings,” and also knew when he’d had enough. He stopped eating and, with the help of hospice, was gone four days later. The head nurse at his nursing home came and shook my hand when I did not continue treatment.

Recently a friend sent me a popular online poem, Grief, by Gwen Flowers, in which she advised: “Grief is not a task to be completed and moved on, but an element of yourself, a change in your being. A new perspective.” A new dimension of self.

This mindset has made it easier to accept the emotional ups and downs of loss and believe that the normal feeling, my old self, will return.

An up and down situation

At the end of April, my brother became seriously ill with the flu, then unexpectedly recovered but was very frail. His medical team had told me for several months that he was slowing down mentally and physically. He still seemed to enjoy some days, was sharper at certain times, and looked more like his old self.

I thought I sensed a will to live in the things he did and said. But by spring he had weakened and often no longer showed much, if any, enthusiasm for each new day. He died on June 15th.

Discovering phone messages and emails

Each of my three family losses made me think about what I could have done differently.

Luckily, I also thought about all the things I did right that helped me, even in small ways.

With each one, I was grateful that I had saved letters, cards, notes, and even emails and voicemails to give them their truth.

Over the years, I had packets of letters and their daily calendar diaries from my parents. My brother hadn’t kept anything like that, but a few days after his death, I discovered that I had saved many of his voicemail messages for myself over the last 10 years since his stroke.

Thankful for the smartphone spirit

I thought they had been deleted on my phone, but through some technological genius they were in a separate file there. I started listening to them, sometimes when I couldn’t sleep, and it seemed to help.

Sometimes I heard his normal voice when he was just reporting a fact or an interesting newspaper story. Other times it sounded like he was very anxious to get help, or he wanted to voice a complaint, ask a question about a doctor’s appointment, or even wish me a “Happy Thanksgiving” or “Happy Easter” or “Go with me.” Me out for dinner. “Birthday.”

A soothing voice in the middle of the night

All of this gave me perspective. As I listened, I realized once again how dependent he was for so many years, how hard he worked to keep his life under control, and how he was spiraling downwards. I admired how well he had done for so long. In the end the spirit was gone from his voice.

I also had saved emails and cards from his friends, especially from the first few years after the stroke, 2012 and 2013, when people from out of state still visited him.

Another help was access to some of his medical records at his very family-oriented healthcare facility. After his death, when I had questions about what happened, I was able to read through his medical reports, notes and test results. I was reminded of how sick he had been, how much had been done to help him, and when I saw something I didn’t agree with, I could try to understand the context.

I do think I would have benefited from more direct, factual medical information sooner – language that didn’t use jargon or clear phrases like “Think about next steps” when he died.

And I found it particularly helpful to reach out to a few friends and two retired nurses I knew who could talk to me about their own experiences. The dying process can be very difficult, including for the staff, the nurses said. And they were also able to answer some of my medical questions.

The Duxbury Senior Center offers “Let’s Talk About Death.”

The Duxbury Senior Center is currently hosting a series called “Let’s Talk About Death” with Cheryl Boteri, a death companion and end-of-life support worker. Their goal is to facilitate end-of-life discussions and planning.

The next meeting will be Nov. 8 at 10 a.m. at the Duxbury Senior Center, 10 Mayflower St., Duxbury. To learn more, please read the Senior Center’s November newsletter or call 781-934-5774.

Reach Sue Scheible at [email protected].

Lessons from the last days of my brother’s life: What helped