Being With Things as They Are

October 31, 2016 by School of Medicine Webmaster

We all know that we are mortal, and that we will not live forever.  However, when death is imminent for a loved one it still is not easy to accept.  My family and I have faced this recently with my 93 year old father, Jack.  He was actually my stepfather, but he married my mother 50 years ago after my father died so he has definitely been the principal father figure in my life.  Jack’s health deteriorated suddenly and he began receiving hospice care several weeks before he died earlier this month.

At times like these there are many opportunities to practice mindfulness.  There was the decision to make about hospice.  Was it the right time?  What were the appropriate goals of care?  These decisions are difficult, and it is important to be aware of what we as children and loved ones may want or wish for, and what the person facing the illness wants.   We may not be ready to let go when the person with illness is, or the person who is ill may not be ready to focus on comfort even when they seem to be really suffering.  In these moments it can be important to pause, to notice our thoughts and feelings with compassion for both ourselves and for others.  In my father’s case, he made his wishes clear, and he was able to participate in the conversations about his care.  Although talking about physical decline and death is difficult, it is important, and addressing these issues directly and compassionately seemed the best approach for us.

The burdens of caregiving at the end of life can also be challenging.  One of my father’s wishes was to never go into a nursing home or the hospital.  He had been living independently in an apartment at a local long-term care facility, and my wife and I made the commitment to care for him there. Although hospice provides a lot of services, continuous care in the home is not one of them.  We did have some help from a caregiver service, but my wife and I split the duties the rest of the time.  We were lucky since I am a doctor and she is a nurse so we were comfortable providing the care my father needed, but doing this was a big commitment and provided more opportunities to practice nonjudgmental awareness.  Were we both committed to doing this?  If we were, how were we going to make it work?  We both have jobs, and usually work over 40 hours a week each.  Could we be aware of both our own and each other’s needs and come to some agreement about who was going to do what and when, and each feel heard and valued?

As Jack’s condition continued to decline, he remained quite positive, and he continued to ask how others were doing, and always said please and thank you to those who were helping him.  As his needs increased we hired more help, but we continued to be his primary caregivers, and we felt it was a privilege to care for him.  He had given us so much over the years, and this was an opportunity for us to express our love in return. Through all of this my wife and I tried to practice paying attention to both our own and other’s experiences, noticing when we were just reacting, and then pausing to breathe and to try to respond more skillfully.

In the midst of caring for my father, we were also looking forward to our son getting married, in an out of state location.  We had a family discussion including my siblings, who all live elsewhere, about who would stay with Jack during the wedding, and my sister and her husband volunteered.  So then my wife and I were faced with a real challenge to practicing present moment awareness.  On the one hand, we wanted to be with Jack and help with his care, knowing his death was imminent, on the other we wanted just as much to be present and happy for our son and his fiancé’s big day.  For the most part we were successful in balancing these competing priorities and emotions.  We were largely able to let go of feeling responsible for things we couldn’t control with my father’s care. We were available by phone for my sister and brother-in-law, but they also could rely more on the hospice nurses.  We also accepted that we might not be there when he passed away, and felt for us, and for him, it was more important that we be at the wedding.  Jack had the date on his calendar, he often asked about how the preparations were going, and he definitely wanted us to be there.

In the end, we were able to have a wonderful time at the wedding, which was beautiful and all that our son and daughter-in-law had hoped it would be.  My sister and her husband felt honored for being able to spend time with Jack over his last few days, despite how challenging they found the situation to be.

At 5 am on the day after the wedding we got the call that Jack had passed away peacefully, at home with family members at his side as he had wished.   At the post-wedding brunch later that morning we paused to acknowledge his death, which he had accomplished with a degree of dignity and continued concern for others that all who helped care for him admired.    He had the type of death that many of us hope for, being healthy until developing a serious illness that only lasted a few weeks, and able to make his own decisions about the care he received.   For that we were all grateful.  And then we ate and watched the bride and groom open presents, and felt their joy as they began their married life together.

Filed Under: Monthly Musings