The Dilemma of the Caregiver

30th October, 2010 - Posted by L. John Mason -

What are you supposed to do? When you are a caregiver for a person with a terminal illness and you want to provide assistance no matter what the patient wants. At some point, a choice will be made to end treatment and begin “end of life” hospice support. If you are family to a terminally ill person, you may not want them to die but you may have to support the decision to prepare for the “end.” This can be the definition of ambivalence. And, to what extremes do you decide to participate??? 100% 50% or what??? How can you LIVE with yourself and the extent of your participation? Do you want to feel like you did everything possible for your loved one, or, for yourself? “Yourself” may have different requirements of 100% participation… A true conflict….

It is hard to know what is expected and to what degree you will feel OK in participation. When my father lay dying from a CVA (stroke), I sat by his bed and told him not to be afraid, to let go, and to embrace the dying experience. He needed this comforting because he was afraid to let go. As a son, I felt horrible about losing my father and yet I was the only person available to support him in “letting go.” (At least, that is how I felt.) My personal loss and pain was “trumped” by the need to serve and support my father.

Almost everyone, who lives long enough, will lose a family member or friend. It is an experience in life that we are often poorly prepared for. Everyone is unique and every situation of personal loss is different. For me, I find myself on a roller coaster with many dimensions. My wife has been living with a terminal illness for 7 years. The doctors gave her a maximum life expectancy of 5 years at the first diagnosis. We have lived with the nightmare of losing a precious life well before she is prepared to to go. She has done everything she could afford (mental, emotionally, spiritually, financially) to do to maintain her life. We are beginning to lose this battle. Her cancer is beginning to wear us down and to win. I have very little control and I do not want to lose my bride and my life partner. I want to do my part of supporting her as well as I can. The dilemma for me is what am I supposed to do? Do I tell her to fight or, do I assist her to “let go”? How will I be able to live with myself, no matter which way I go??? So far, I have tried to follow her lead and to help her to do what she has done in the first 7 years which is to fight the cancer, but there are emotional and spiritual changes beginning. She is not avoiding the discussion regarding the “end of life” choices that we may need to make. Though, intellectually I knew that this time would come, it is very difficult for me to transition to fully, 100%, support her process of letting go.

I know that I will do what is necessary, but the ambivalence is confusing me and this roller coaster ride is not the kind of fun that I would easily recommend. The learning from this process is intense and I know that I am not the first person to move through the caregivers’ dilemma. I am not the first man to be in the process of losing his wife, but this is the first time I have ever lost a partner of all these years. A lesson to be learned, and relearned, is to appreciate everyday and live every moment as if it might be the last….

Hug your family and friends… Tell them that you love them.

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