I Tried (And Failed) To Give The Perfect Death

A year and a half ago I was thrust into the role of caregiving when my mother-in-law Kay was diagnosed with Pancreatic Cancer. At that time, I had helped support my grandparents when they had a health crisis, but had not participated in the day to day caregiving of someone who needed support. 

Kay was fortunate to be sharp throughout most of her illness, which made caregiving less taxing than it could have been. Still, I found the days to be very busy with keeping up with medications, managing hospice visits, friend/family visits, advocating for long term care insurance, arranging for whole body donation, and all of the unexpected tasks that arise when someone is ill. 

The days filled quickly. Though Kay chose to forgo treatment and come on to hospice right away, there were still many appointments to keep track of. After a couple of weeks, we started making Tuesday  “Lisa and Kay Day” so that we had some time to focus on tasks and our quality time together. 

In addition to the daily tasks, Kay had an idea of what else needed to be done to prepare for her death. Her list included:

• Choosing music and scripture for her memorial service
• Writing down the specifics to include in her obituary
• Giving detailed instructions for where the important documents were

I was in full support of this list and worked with her to make sure we got it done. In addition, I desperately wanted Kay to write a letter or create a video for her two children, my husband and his sister.  Yet, each day kept being filled with other tasks. 

I kept gently nudging Kay about the letter or video. She never said no. But, she would talk to a friend on the phone and then write a thank you note (she was known for writing a thank you note for a thank you note and she spent hours sitting at the kitchen table continuing with these notes to friends) and that was all that could be done that day. I kept thinking about how valued this imaginary video would be for her children and brought it up again to my brother in law, Mat.

Mat helped me see that Kay was living her final months demonstrating to us what was most important to her. Her life was a very social one. Her family was the most important aspect of her life, however she was also involved in many groups and organizations that were important to her. She had developed very meaningful relationships with friends and she also wanted to spend energy on those friendships at the end of her life. 

I understood that I had to put aside my idealized version of what this “good death” was going to be. She wasn’t my project to have the most prepared ending ever. It would be okay if she died without a special letter or video for her children. She was telling them in real time how much she loved them and what they meant to her. I had to respect that Kay was living her days in the way that she wanted to. 

I was able to let go of the task list and focus on the person in front of me; this bright, loving woman full of joy and appreciation for every minute of her life. We drove to three Chinese restaurants one afternoon to order the best meal at each one. We ate breakfast on her patio with the expensive tablecloth from France that she decided she must have one afternoon. We sat on a bench overlooking Lake Michigan and talked about how much we meant to one another. We lived each moment to the fullest.

My time with Kay was a lesson in the day to day grind of terminal illness and caregiving, the lack of time and energy that one has in this situation and what’s realistic, and the understanding that what is important to the dying person is what is most important, not my own agenda. Kay died how she lived, appreciating and savoring each special moment. This was the gift she gave us.