Dilemma of the Caregiver

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. As I write this blog, 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 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.

This blog was written in 2010 about 15 months before my wife passed. The dilemma for others who find themselves in the role of a caregiver to a friend or family member is not unique to my situation. Please take good care of yourself and enjoy every minute you can share…

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Proof of Heaven

While travelling to California in March of 2013, my friend Dan gave me a new book to read. “Proof of Heaven” by Eben Alexander, MD. Great reading for me as an update on the research I had done in the late 1980’s regarding interviews with people who had experience Near Death Experiences (NDE) in the writings of Ken Ring and Raymond Moody. In his recent book, Eben Alexander tells his personal story regarding his own near death experience. With the death of my wife in January of 2012, I have been reflecting on the life after death that is discussed in many philosophies and religions. Eben speaks about the feelings of “Unconditional Love” and the message he received from his “guide” that “you can do no wrong in heaven.” What freedom you must experience!

Personally, I have strong feelings that the Buddhist philosophy of life after death may be correct. How do you feel? This way of thinking can free you to live a better life because you have less fear of the unknown, and scary thoughts of what happens after this life has completed… My father feared change and he feared death. He lived in a quiet desperation where he feared making mistakes or taking risks because he feared a possible mortal outcome of any new change.

Since the death of my wife, I was asking (maybe pleading) for information regarding her status, hoping that she was “in a better place.” I had a feeling that she was not suffering any more from her struggle with cancer but I wanted to know that she was happy, surrounded by unconditional love, with access to the wisdom of higher consciousness. In my travels after exposure to Eben ALexander’s book, I had experiences that lead me to believe that I did NOT have to worry, for my wife, Barbara, WAS in a better place. It gives me some peace of mind and my heart feels better.

My question, which has no answer, is who will greet me and guide me when my turn to pass comes??? In the writings of NDE’s and even in Eben Alexander’s book, “Proof of Heaven,” it is often stated that a guide (or guides) step forward to greet you and to show you around (for lack of a better phrase) and to assist you with the awkward transition into this new existence. Often, the guide will be someone familiar who you loved or knew who has passed on before you… So recently I pondered who this entity might be for me…??? My mom or dad, friends from the past, or family??? I realize that this is not the most important consideration I have to deal with in my present life, but the question came to mind. Who do you think will be there to greet you when your time to pass on occurs? In Eben’s story, he asked this question and did not receive the answer that he expected which was both surprising and, for me, a highlight of his book.

Most importantly to me as I write this blog is to ask you what awareness do you have regarding the process that happens at the end of life AND will this belief give you assistance in living your life more fully and with less fear. In my second book, “Stress Passages: Surviving Life’s Transitions Gracefully,” I tried to address the anxiety that people have as they face their mortality (death and dying) and I offered strategies for managing this anxiety so that life can be experienced with greater peace and less distraction from the fear of the unknown. I want to write more about this in the coming months.

Please live with grace and awareness.

If you have questions that you believe that I can assist you to better understand that death and dying are not as scary as our fear and anxiety creates of the unknown, contact me through the Stress Education Center at www.dstress.com. AND, please take good care of yourself.