Tonight's picture was taken in October of 2007. Mattie was in kindergarten at this point, yet his preschool friend, John, invited Mattie to his Halloween party! As you can see, Mattie was in the lower right hand corner of this photo holding a roll of toilet paper. Myself and another mom, were being wrapped as mummies by the kids. Clearly it was a happy and memorable moment.
Quote of the day: Sometimes your joy is the source of your smile, but sometimes your smile can be the source of your joy. ~ Thich Nhat Hanh
A smile can be the source of joy! When I saw this quote today, it resonated with me. Today I went to visit my friend who is dying of cancer. I met this mom at Mattie's preschool in 2006, since our children were in the same classroom together. When you are sitting with someone who is so gravely ill, but they look up at you and give you a smile, I would say this captures your attention.
I am always in amazement being in the presence of someone who is dying. First of all, my experience is they know they are going to die even before they are told about their condition, and of course before their loved ones can process and accept the news. You may think based on how TV and the movies portray people on their death beds, that this is an hysterical time. That people are crying, the person who is dying is inconsolable and that there is a great dialogue about the future and how the dying person wants loved ones to live their life without them! NONE OF THIS truly happens, unless you are a part of a soap opera.
When caring for someone who is dying, you are trying to manage the minute by minute tasks and care associated with this life altering situation. There is really very little time or ENERGY to be doing higher order functions like thinking, reflecting, and being in touch with the feelings associated with the pending death. I also think this is the way our minds protect us because if we were absorbed in the emotions, fears, and reality in front of us, I know that it would be impossible to fulfill the role of caregiver, much less care for ourselves.
With that said, I also know that death doesn't look the same for everyone. For some being on pain medications enables them to look restful and at peace, and then you have situations like Mattie in which no amount of drugs were going to relieve his pain or help him breathe. I attended one conference session a while back and the topic was legacy planning. Legacy planning involves families or social workers working with the patient who is dying and capturing thoughts about how they want to be remembered. The conference session I was in was detailed and showed us examples with memories and wishes captured in notebooks and through pictures. In a way having such a keepsake enables families to remain connected to their loved one, but also they know what their loved one's wishes and desires were for them.
All I know is since 2009, I have assisted four people die, and in each case, I couldn't possibly see where legacy planning fits in. Whether a child or adult, families want to fight for the lives of their loved one and sitting back and trying to do legacy planning is counter intuitive. I do know that sitting through the legacy session at the conference made me feel sick, as did Peter. I came away from it not uplifted but instead that I failed Mattie. That I hadn't captured his wishes toward the future, that I did not do legacy planning and therefore felt guilty.
There are resources out there to help guide such legacy conversations, but frankly in my perspective, whem helping patients and caregivers with death, you have to come into the process without an agenda. The agenda has to be run by the family and the patient. I know that Peter and I followed Mattie's lead about his desire to die at the hospital and his wishes to be surrounded by those he knew at the hospital. At the end of the day, these memories are part of Mattie's legacy. He had the where with all and insights to know his situation and advocate for his health care! For which I will always be proud of him.
No comments:
Post a Comment