eFuneral

Bonnie Lee Carter

Mother, Fighter, Hero

A tribute in memory of Bonnie Lee Carter

This tribute was written in 2006 by Diana Hacker, Bonnie’s daughter. Diana delivered this speech to her fellow hospice workers to shed light on her dual role as a family member of a loved one in hospice care and as a professional hospice nurse.

I’ve been on both sides of the fence: hospice nurse and family member of a hospice patient. Hospice has been a part of my life for over 10 years. I’ve had the privilege to be involved in many patients and families’ lives during their final stage. My own life has been enriched, because of the willingness of these people to share who they are and what they’ve learned on their own journeys. I’m amazed at the dedication of family and friends who give so willingly of themselves. As an observer, I am almost moved to tears to see the amount of love that is shown. I frequently tell the families I’m working with that sitting at the bedside is more exhausting than working a job because we don’t have the control to change the situation. Often times at the end-of life, our loved ones will stop communicating with us and all we can do is just be present.

I experienced that with my mother, who died on June 17, 2005 at age 65. She spent the last several months of her life at our hospice inpatient unit. She was on the East wing—my wing and I had believed that I could just go about my day and not be distracted by her being there. That thought lasted about a day. I had to acknowledge that it wasn’t a realistic expectation. It was difficult to admit, but my co-workers who have always been supportive had to help me take a step back. They treated my mother and me with dignity and respect. They helped me through the dying process and answered my questions when I could no longer think as a nurse. They told me stories about my mom and how they enjoyed caring for her. I had this irrational fear that she would be “too needy” and drive the staff crazy. But those concerns were unfounded and my mom’s kindness and spirit shined through, even though, she did manage to share a few embarrassing stories about me with my co-workers.

My mother- she continues to be a huge influence in my life. I still wonder sometimes what she would think about this or that or I have questions only she would know the answers. My sister and I have both taken on many of her characteristics. I’m not sure we’ll ever be as patient as mom though. As kids, we would each be on one side of her the minute she arrived home from work talking about our day. I always felt she had time for us. She was the center of our family and made us feel safe and cared for. She seemed to have boundless energy—loved mowing the grass, washing the cars, cleaning the house, along with working and caring for her family. She didn’t strive to be the center of attention and avoided conflict if at all possible. Her independent spirit served as a role model for my sister and me. She wasn’t one to sit around- if she was sitting, she was crocheting or another project would be in her hands. She loved having a summer tan and didn’t like the cold weather. Every Friday, we had spaghetti (I still can’t make her sauce). She loved the year 1957 (the year she graduated) and anything to do with that era. Her faith and church family were of utmost importance to her. She was good in crisis and family came to her when something went wrong—she was calm and supportive. Her friends would say she was kind and funny—a good friend to have.

When she was 45, she was diagnosed with a rare brain cancer. Since she had always enjoyed good health, it was a blow to her and our family. The loss of hair, energy, and radiation treatments didn’t seem to depress her. She pressed on and anxiously longed to return to work. In fact, she had a co-worker bring work home for her to complete. She longed to return to her active lifestyle.

Breast cancer occurred when she was 48, that brought about chemo and losing her hair again. I was with her for her surgeries, but was living overseas at the time and wasn’t able to be there for her recovery. She again returned as quickly as possible to work.

As the years passed, we noticed a change in her personality and memory. She had hearing loss and difficulty with her balance. Her outgoing personality became more introverted and somewhat negative. Her critical thinking skills deteriorated, and she seemed to take everything the wrong way. She looked to others for strength, when before others’ looked to her for her wisdom. She longed for the past and had trouble embracing the life in front of her. She didn’t get as involved in our lives and her energy level was low. She started volunteering during this time—playing piano at a nursing home. We didn’t find out until much later, over 10 yrs, that the radiation she received in 1984 had caused damage that was long lasting and progressive. The behaviors that we were so perplexed by had a cause.

In Oct 2004, she was again diagnosed with cancer- this time it was stomach cancer and it was terminal. My sister and I had to tell her. She had a brief look of anguish on her face and then in her usual way just got on with it. Her courage was inspiring, and she dealt with her disabilities with a grace I will never possess. She never said “why me” and I didn’t see despair. She always protected her family and so of course I don’t know how her heart dealt with the situation in private. When I moved her to the inpatient unit from home (which was 5 hrs away) that’s when she mourned. She missed her friends and especially her church. Her family and friends kept in touch through cards, phone calls and visits. Her room was filled with cards from people whose lives she touched. We were able to take her home one last time. It was amazing to take her to church. People approached us to thank us for bring her. She was so loved by her church family, and I could see her just soaking in their affection. The visit was taxing and we were all exhausted by the time we returned to hospice.

Her hospice room definitely reflected her own way of living. She had become a packrat and her most important possessions were stacked around her recliner. Her recliner became the center of her universe as she became more debilitated. I had a difficult time overcoming the urge to straighten and throw away, but came to understand that this was how it had to be. She spent a lot of time writing poems, crocheting, sending cards, and talking on the phone trying to stay connected. She crocheted something for one of the staff, who was having a baby. She wanted to give something back. We had one more Thanksgiving, one more Christmas, and one more Mother’s Day with her.

As her disease progressed, so did the weakness and confusion. She slept more, and then became restless the last week. Her symptoms were managed and she rested again. She stopped talking to us about 5 days before she died. We would sit there and still talk to her. The last 60 hrs, my sister and I sat at her bedside waiting for her to die. We laughed and cried, reminisced and reflected. We bathed and repositioned her those last couple of days until our exhaustion got the better of us, and I finally let Jackie, her nurse bath her one last time. We had a lot of privacy to just be there with her. The window was open and the sound of the fountain was soothing. Those last few days were quiet and she didn’t struggle. She just slept until her breathing changed and 5 minutes later she was gone. As my sister and I sat there, we each felt a sense of relief that she didn’t have to struggle anymore, but the loss was incredible. We quickly packed her room up—we didn’t dare while she was still alive. I didn’t want her to wake and not see her things around her. I had a difficult time leaving her. Shouldn’t I be doing something for her—I just can’t leave. She was gone, but seemed so vulnerable.  How could I leave?  How could I say goodbye?

Bonnie, her nurse that evening, said “you need to go home.” There’s nothing else to do. And there wasn’t anything more that I could do for my mom. I called family and friends to let them know. I had planned her funeral already several months before, so it was just getting though the next few days.

When I returned to work, my coworkers were just as supportive—letting me step away if I needed too—when the memories or loss just got to me. It’s been over a year now and I still have an occasional comment from a coworker about my mom and those are special moments for me. I recognize the support and care my mom, family, and I received. But that’s who hospice is—going that extra mile, genuine caring, respecting a patient’s autonomy, making sure that a patient or family member has a cup of coffee, a warm blanket, a hug, or shoulder to cry on, the expertise to manage symptoms and discomfort. And most important to recognize that dying is a part of life.

* Based on a post on eFuneral.com - a website that provides helpful information and support to those caring for a sick loved one, thinking about end-of-life, or grieving a loss.