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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After the Death of My Wife: 6 Months Into the Void

June, 2012 – Posted by L. John Mason –

It has been an interesting six months since my wife passed. Early on, besides the overwhelm, I thought I could get through this difficult transition fairly quickly due the knowledge that I had been preparing for this loss for 7 years. I am learning that this was an illusion. When my parents passed away, I handled this well and moved back into my life with relative ease, but losing my life partner of 28 years has proven to be more difficult than I had imagined. Life has a way of being surprising. And, expectations have a way of leading to disappointment.

I have no reason to whine. I have great friends and lots of healthy support. What has surprised me are the little things that then trigger the beautiful, bitter-sweet memories that float through my consciousness and cause the tears to flow down my cheek. These events are brief, and for the most part, cherished as friendly ghosts of a loving relationship. I have learned that a remembering which causes a smile and then a tear are beautiful and a celebration. Certain events that I would not have thought would trigger the flow of emotions surface like Mother’s Day. It was harder than I thought and I am not sure why. Preparing for the local Relay for Life and the beginning “Survivor’s Walk” was an event that Barbara and I participated in for 7 years and this year the anticipation was difficult.

We have all suffered loss and transitions, and we have our own unique way of getting through these times. Perhaps your loss was not the death of loved one but a relationship change, or a job change, or a move into a new environment. There are changes that are more difficult than others based on your individual life. There are times when you ruminate about your loss and seem to spiral down into despair. These are important lessons to learn from in your life, not easy or fun, but important to wade through. There are recommendations that can be made to allow you to move more gracefully through these possibly dark times. Consider the following: 1. Take Good Care of yourself… practice wellness, 2. Get the HEALTHY support from healthy friends or family, 3. Get Professional counseling support if needed, 4. Focus on positive potential plans or goals, 5. Do not be in hurry to control your expectations (easier said than done.)

Consider sharing your feelings and thoughts early and often. The more you share the story the more you can desensitize yourself to the trauma unless you are ruminating too deeply. Avoiding the healing, with its pain, by using substances like alcohol, drugs, and food can give some people momentary comfort but can slow down the process or even create more problems. For me, the best strategy has been to speak with my many healthy supportive friends. Though not everyone is as lucky as me in this way, you might be well warned that building these positive relationships can and should be done now for your future requirements. If all else fails, local hospice organizations have bereavement groups that can get you started. There are books on the subject. There are counselors, coaches, and clergy who are trained to help. Do not think that you are strong to hold these things in and to NOT BOTHER anyone else with your pain. In fact, by sharing your grief and challenges you are probably allowing others the great benefit of being able to give some support and nurturing to you (and this will allow your partner to feel good about their efforts in your support.) Listen to advice when given but move slowly and carefully on any additional transitions that may be suggested. In most cases you do NOT need to rush into anything.
We can not escape life without loss and transitions. The trick is to learn how get through these times as gracefully as possible and to learn the lessons as easily as possible (so you do not have these lessons have to be repeated…) Keep your eyes open and your heart prepared to give and to receive. No one knows how to do these things perfectly and most of the time these transitions will not be pretty. They will be tests and lessons to learn from.
When we lose a major source of love and support, you can not easily replace this relationship but you can find ways to be open to positive, healthy relationships, and new sources of love, to begin to fill the void. (Do not rush into this but allow yourself to consider the possibilities.)

Please take good care of yourself. Support your friends and family if they have had losses ’cause we can all learn from these times… Celebrate Peace…

We send comments, your thoughts, and your feedback the Stress Education Center at wellness@dstress.com or through the website at www.dstress.com

Dying at Home

I have firsthand experience with Home Hospice and the dignity provided a loved one by allowing them to die at home surrounded by their loved ones and the familiar world that they lived. If possible, most people who I know, would want their last days to be at home and not in the sterile environment of the hospital. My wife and I fought cancer for 8 years. She requested Hospice assistance 3 months before cancer took her from our family. I have to admit that even with all that time to prepare that I never gave the death with dignity at home much real thought. It sounded good and I knew it was the way she wanted to die. She did not want to die, at all, but this was not to be avoided. The last 4 days of her life was a blur for me. Even with the knowledge of having signed up for Hospice assistance, and having applied for the “right to die” medication prescription, I was in a fog about what was about to happen and how to deal with it.

The real reason I feel compelled to write this article is the lesson that I am, only now, becoming aware of an important lesson. When my wife came home from the hospital, for the last time, and Hospice had set up the pain management medicine, Lauren (my sister-in-law) and I were left in the house to care for my lovely wife. We worked together as a team and it was going pretty well. There was some fear involved with the responsibility but we had been through many difficult experiences in the 8 years including emergency room visits, major surgeries, chemo therapy, doctor’s visits, and endless medical procedures and testing. Our Home Hospice nurse came the next day to check up on all of us and she increased the amount of pain medication and things seemed OK. With blessings for all of us, my wife passed away the next morning. I was not really prepared. I do not know why other than the blur and the denial that I must have felt at the time. BUT, one year later, I finally a woke to the realization that my wife dying at home was much more traumatic for me (and my sister-in-law) than I had been aware of at the time.

Death with dignity at home is a good thing for the patient but I am not sure how many of the involved family and friends are really well prepared for this experience. I appreciate Home Hospice and what they do. I just never considered how difficult dealing with my ghosts related to watching my beautiful wife die in our home would be for me. A century ago, people dying at home, surrounded by their family, was more common in the United States. This is still common in other cultures around the world but death and dying has been hidden well within the culture of the US where youth and beauty are worshipped, and sickness and death are hidden in hospital and retirement homes. Dying is an inevitable part of life. We can not escape it. We can be better prepared for the death of our loved ones and our own end of life.

My main point of this blog is to report that watching a loved one pass away at home can be more significant than we might be able to imagine. Prepare yourself. Hug your loved ones and friends. Live your life with as much vigilance as possible. Honor your spiritual needs.

I KNOW that my wife is in a better place. She is in a “bigger and better place than you can imagine” I believe. My life will continue and will hopefully find ways to be of service as I live with my “ghosts.”