Being An Advocate for VSED

An advocate speaks and acts on behalf of someone else. I was an advocate for my mother for the eleven years that she lived with Alan and me in our house. I was Alan’s advocate during the last five years of his life as he navigated laryngeal cancer and Alzheimer’s disease.

The role and responsibility of an advocate is extensive, and it changes over time depending on the needs and desires of the person you are helping. If that person lives with you, you become: the case manager, nurse, cook, driver, coordinator of care, go-between with the doctors and specialists, and are involved in the physical, emotional and spiritual needs of the person. It is an all-encompassing job. There is never a day off unless you have help from others or hire care givers. And even then, the concerns you have for the person you are caring for are foremost in your mind.

I’m doing this because I have a disease that will rob me of the ability to make this choice. Since I don’t know about this (i.e. VSED), probably not a lot of people do. And it sounded horrible. Now that I’ve investigated it, it doesn’t sound horrible and I’m going to do it. – Alan

As the advocate for both my mother and my husband, I discussed everything about their care with them. At some point, I had to make decisions on my own because they were nearing the end of their lives. They trusted me and looked to me for guidance. I had to make all the arrangements that would support them as their energy, capacities and health declined. My mother died in 2002. My husband died in 2013.

In both cases, I hired care givers who came into my house to help. I appreciated their help tremendously; yet it left us without much privacy and was sometimes a challenge to navigate. As primary caregiver and advocate, I was emotionally and physically exhausted much of the time, and didn’t often have an excess of energy for the needs of the care givers. Overseeing their needs was an additional responsibility, and sometimes the caregivers were not pleased with my decisions. Their needs included scheduling concerns, how they related to me, what I asked them to do and more.

My mother lived with me for the last eleven years of her life. She died at 95 ½. She aged. Her heart wore out. She entered hospice (when I requested this from her doctor). She died at home with her four children and two of her grandchildren surrounding her.

My mother went to bed joyfully one night, glowing. When I kissed her good night, she said, “You know, I’m never going to die.” I replied, “You mean you’re never going to die!” She said, “That’s right. I’m never going to die!” And I replied, “You mean you’re NEEEEVER going to die.” And she laughed aloud and said with a big grin on her face, “Well certainly not tonight!” The next morning she was in a light coma and then went deeper into coma and died four days later.

My husband’s death was different. He decided to voluntarily stop eating and drinking so he did not have to live into the late stages of Alzheimer’s disease. He was mentally competent during this process. It took him 9 ½ days to die. As his advocate, I had to pre-arrange medical and legal support. (See the sections “The VSED Choice”Medical Preparations and Legal Preparations – on the website.)

It is a privilege to be an advocate for a loved one. It requires a lot of patience, selflessness, and self-care. It can be physically and emotionally demanding and exhausting. It requires asking for help from others. There is also great joy and learning that occurs. My life today has meaning and joy as a result of being so dedicated to both my mother and husband. My fear of dying is gone. I am more present each day, and live in a state of gratitude that I didn’t experience before their deaths. They both demonstrated that a person can die peacefully, without fear. I was with each of them when they took their last breath. I am a better person because of what I did for them and learned from them.

Each advocate has to figure out what path is right for them and their loved one. Your way will be different than my way. But if you act from a place of kindness, compassion and love, you will be able to give the support that your loved one needs. It doesn’t matter what you do; it only matters how you do it.