Tuesday, February 25, 2014

Tuesday, February 25, 2014 -- Mattie died 233 weeks ago today.

Tonight's photo was taken in February of 2009. I honestly do not remember who took this picture, but I remember this moment distinctly. Jenny (Mattie's art therapist) and I were pushing Mattie's wheelchair to the outpatient clinic. If you look closely you can see that Mattie's right leg was back in a cast. Because Mattie wasn't able to fully participate in physical therapy and regain the use of his operated leg, the leg became permanently bent at the knee. The cast was used to try to straighten out the leg. What you may not be able to tell here was that Mattie's wheelchair was going down a ramp. However, he wanted Jenny and I to literally let go of the chair, to allow the wheelchair to go flying down the ramp. Note that Mattie, unlike me, LOVED roller coasters. Notice the person in the background watching this scene and smiling. Any case, because Mattie was adamant, we did slightly let go of the chair but ran down the ramp after the chair making sure Mattie did not get hurt. After all, an injury of any kind could have been deadly for Mattie. Not only for his surgical sites but anything that could have delayed chemotherapy would have been life altering.  


Quote of the day: The quality of life is more important than life itself. ~ Alexis Carrel


As I reflect on those around me who are quite ill and incapacitated, tonight's quote comes to mind. I think it is easy to say that we value life over everything else, but before coming to that quick conclusion, I think we always need to evaluate a person's quality of life. My clinical experience involved working with caregivers who had to make difficult decisions about the care of their aging family members, but in addition to that experience, I watched the complexities of aging with my own grandmother. My grandmother suffered a massive stroke when I was in college which completely transformed her life, she was paralyzed, unable to swallow, and had a personality change. This personal insight gave me the necessary where with all to try to assist others. Because I wasn't just talking about theory and clinical experience, but knew first hand the ramifications of an illness on a family system. 

Talking about life and death decisions are very different when the person who is ill is an adult versus a child. Frankly, it is very hard for a parent to accept that there is NOTHING left to medically do other than to focus on the child's quality of life and the dying process. A child dying, or let me restate that..... YOUR child dying is NOT normal and therefore I think having a quality of life discussion is super difficult if not impossible. In most cases, most parents fight for life at all costs, even when others may deem the quality of life to be poor if kept alive. 

But what happens when the person in question is an adult or an older adult? We as a society may think that dying for someone older is just an acceptable part of life and therefore the debate of life or quality of life most definitely comes into the picture. I am just as guilty for having this internal debate. Yet at the end of the day, whether the person is a child or an older adult, really doesn't matter. This is clearly someone's mother, father, sister, brother, husband, wife, etc. The thought of losing a loved one at any age is awful and painful. Yet when we have a history with someone and have known aspects about their life, how they lived, what their priorities are, what they valued, and so forth, it becomes very disillusioning to see the person unable to move, unable to talk, and basically unable to function in any capacity. The body is living, but is this really living? Is this a good quality of life? Is this how a loved one wanted to live out his/her remaining days? I don't profess to know the answer to any of these questions. Such questions must be answered on a case by case basis, with the family, always respecting their values and beliefs. 

I think the one thing I have learned in the process of Mattie dying, is that the dying process really served two fold. Our ultimate goal was to make sure Mattie wasn't suffering. Unfortunately we did not do too well on that front. Mattie had an agonizing death and literally had to be put into a coma in order to die. But secondly, the dying process has a lot to do with who is left behind. The caregivers and family members are left with these memories and one of the worst feelings to have upon a loved one's death is regret, guilt, or remorse. So helping someone die is complicated because it isn't only about the person in question, but the people left behind must also be factored into the equation. As I have two friends who are gravely ill, my mind always swirls around these topics. My natural instinct is of course to help..... to try to shed light on the situation from my professional and personal standpoint... but no matter how well the intention, sometimes I have learned that the best thing to do is stand back.