what I learned about dying from my family

My mother passed away this past February from dementia. My father passed away from Frontotemporal Dementia in 2014.

My brother passed away from cancer this past summer and my mother-in-law also died after an extended illness two years ago.

There have been many deaths in my family… too many…

I first witnessed death over forty years ago at the bedside of my grandfather. With my grandmother at his side, he slowly slipped away. She kissed him good-bye and I was in awe at the solemnity and beauty of the moment. It felt like the room was filled with love. I hold this precious memory in my heart to this day.

Lesson #1: Do not be afraid. The process of dying and death, while not always pleasant, brings the end of suffering and offers peace. Witnessing a death or holding in love a beloved family member or loved one (or maybe even the stranger) is the greatest gift to give and receive.

As my father’s time of death drew near, it was a privilege to be able to spend the entire last week with him and offer support to my stepmother. He had decided not to eat or drink. It had been many months since he recognized my brothers and me. At the hour of his death, he was surrounded by family, his body wasted and features barely recognizable.

Lesson #2: The process of dying and death can be and often is messy. My only experience thus far has been with dementia and cancer, both of which ravage the body and are painful. I will never forget how small he looked like lying on the hospital bed. The man I worshipped my whole life reduced to a skin and bones absent life force. 

His body and brain were donated to the Mayo Clinic as part of ongoing research. He had left behind no instructions other than the place of burial and desire to be cremated. The memorial service came together thanks to the funeral home, however settling the estate was entirely different. It was a mess…..

Lesson #3: Following my father’s death, my husband and I updated our wills, named our personal representative and Healthcare/Financial POAs should anything happen. Our accounts, insurance policies and important passwords have all been recorded. The only thing left for my husband and me to do is identify how we want to be cared for if we are unable to care for ourselves or each other. Our affairs are mostly in order.

My youngest brother was diagnosed with cholangiocarcinoma (bile duct cancer) last Spring. It was difficult and painful to endure and to witness. He had a strong desire to live, and even though the prognosis was not great, the Mayo doctors tried their best. After several surgeries, he was sent home with palliative care.

And still, he fought. Refusing to “give up,” telling his grandchildren that he was fighting the “monster.”  The monster won.

I think a lot about his death and the collective view that we “need to fight” death and wonder if, as a society, we have that all wrong. The wise Buddha offers these Five Recollections:

  1. I am of the nature to grow old; there is no way to escape growing old.
  2. I am of the nature to have ill health; there is no way to escape having ill health.
  3. I am of the nature to die; there is no way to escape death.
  4. All that is dear to me and everyone I love are of the nature to change. There is no way to escape being separated from them.
  5. My deeds are my closest companions. I am the beneficiary of my deeds. My deeds are the ground on which I stand.    (Upajjhatthana Sutta)

We all must leave this human body some time. What if we just accepted “what is” without fighting it and approached illness with love and compassion towards our body/being? Rather than “fighting the monster” we befriend it? Death may not be prevented or even delayed but entered from a place of wholeness, with dignity and grace.

Would this acceptance allow for healing of the emotional and spiritual body… and if we are lucky – the physical body, too? I wonder…….

Lesson #4: Resolve issues. True confession, I have some unresolved issues with my brother and am working towards forgiveness. I regret not doing it when he was alive. My excuse was that there was always someone around but that really is just an excuse when really I was afraid. I was able to visit him the week before he died and tell him I loved him for which I am truly grateful. I think it would have been easier for us to work through our issues together instead I have added to my grief. I am working towards making sure that I have no regrets in my most meaningful relationships… I want no regrets when my time comes.

My mother’s death was perhaps the most difficult of all…. maybe because it was the last and culmination but also because I was not present. We had planned a vacation over a year ago and when it became clear that her time was drawing near made the decision to not cancel. I have no regrets about that as I have spent time with her every month and with each transition from home, assisted living and then to memory care. The bulk of her care was provided by my brothers, for which I am eternally grateful.

My mother was experiencing a great deal of physical pain, and I suspect, emotional pain as well, her last few months. She, too, lost her speech and had difficulty communicating her discomfort, often acting out. I’d like to think that she would say raising a family was her best years but I really don’t know for sure about that. She had a difficult childhood and in later years struggled with mental illness.

I loved her deeply. She was my mother but was often detached and rarely shared her feelings. Did I really know her? Did I see her? Mother-daughter relationships can be so complicated…

Even though we have not been able to communicate with words her eyes always lit up when I came to visit and she held me tight when it was time to leave. Even with dementia, love was there… always!

Lesson #5: Love does not stop with death. I miss my grandparents, parents, and brother… and feel their love each memory. My wish is to be remembered for living and loving well.

Lesson #6: The last lesson that I learned and perhaps the most important is related to #3. We do have a choice about how we want to die. This relates to making sure to update a Living Will and if you don’t have one, get one. With the history of dementia in my family, it is especially important. After witnessing the death of both parents with dementia, if having to choose between dying from cancer (by refusing treatment) or dementia… I choose cancer. It is quicker. Morbid… I know. 

One thought on “what I learned about dying from my family

  1. Peggy, what elegant and important thoughts you shared about death. I wish we could be there for your mother’s funeral. I thought you were so honest and caring with your feelings. I have great respect for your mom. What you shared about buddist thinking is so true, simple, but not so easy to put into practice.

    Like

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