In the United States, caring for another’s health and well-being is a role that many of us assume. This role often accompanies aging. In fact, the National Caregivers’ Association estimates that about 30% of our population spends about 20 hours per week providing care for a loved one who is ill. Whether you provided hands-on care before, during, or following a loved one’s illness, or if you suddenly were asked to make a decisions about the type of care or treatment your loved one would want, most who have made such decisions agree that these decisions were some of the most challenging ones they had ever been asked to make.
That was certainly true for me. After providing hands-on care for my mother, then making decisions for her in the final weeks of her life, I created this company as a source to share information and offer services to those who followed. It is my desire to have a resource dedicated to family members and loved ones where they can learn and share their experiences.
Mom came to live with my husband and I just as our children were launching their adult lives. One incident caused great concern for her personal safety, so after several consecutive years of declining health, she left the home she shared with my father for over 40 years to relocate from her native Georgia to Central Florida.
As my mother and her siblings set a precedence for adult children caring for an aging parent by caring for my grandfather, I followed that example. Mom paid a tremendous emotional price of greater distance from her siblings to a blended household where, for six years, we shopped, cooked, and shared time together. Mom pragmatically “got her affairs in order” and shared her preferences about the type of care she wanted at the end of her life–no tubes and no machines, especially if she were diagnosed with a terminal illness. “Just let me go,” she would say. We both thought that time of decision was very far away.
During what would be her final Christmas in 2001, she developed new health problems. The next three weeks were agonizing as she moved in and out of ICU, underwent several surgeries, and tube feeding, dialysis, and finally, ventilation. The advanced stage of her terminal diagnosis came late, and she was home with Hospice for two days before she died on Valentine’s Day in 2002.
Perhaps, you question why, as her surrogate, and after many breakfast table discussions and being armed with her Living Will (LW), I authorized treatments she clearly did not want. Technically, her Living Will was worded so that, before any treatment could be limited, the terminal diagnosis was necessary for me to refuse treatment. And, in good conscience, refuse nor suspend those treatments without a diagnosis that came weeks after initial hospitalization. Also, Mom kept communicating with me for weeks or shaking her head. The diagnosis came concurrently with her physician’s reports of weakening physical state and outlined what would be extensive, aggressive, daily treatments with little life quality. I share this with her one morning, telling her that I was ready to tell her doctors of her previously expressed decision that would remove her from the ventilator that day. Her blue eyes flung open, she shook her head, indicating “No”. I was dumbfounded, as she’d been so adamant before. I sent in other family members to ensure I’d understood her correctly. I had. So, we patiently waited while withdrawal began. It was then she began to mouth the word “H-O-M-E”. She wanted to go home. Through a sensitive and caring physician and the excellent, patient care of a respiratory team, she was weaned from the ventilator and discharged home with Hospice care.
After mom’s death, I met other surrogates, daughters, wives, husbands, sons, who were anxious, carefully trying to do the best they could to follow their loved one’s expressed wishes. In sharing our experiences and feelings, they encouraged me to follow through on my promise, to use their information to assist others in preparing for the surrogate experience.
My promise is being shared with you here. Through this developing company and its message, we hope to offer services to make this life journey, one we’re all likely to travel, more understandable. Whether we are in a current struggle to carry out our loved one’s wishes, or, are wrestling with what will be the “right” decision for our entire family, we are likely to navigate unfamiliar hospitals, exhaust and strain ourselves physically and emotionally. Thus, we hope to connect the voices of those who have “been there” to foster a larger community capable of assisting and supporting those currently making decisions. This resources and this work is dedicated to all who struggle with making the “right” decisions, doing “what mom would have wanted,” or making a decision they can live with.