Caregivers Pete and Bonnie

Pete was married to Nancy almost 45 years. Bonnie was married to Jimmy for 36 years. I met both of them in church the Sunday before Christmas in Huntsville, Alabama. Instantly I connected with these two caregivers and wanted to interview them. Two days later I interviewed both of them over breakfast at a local restaurant.

Carol: What was the medical diagnosis of your spouse and how long did they live?

Bonnie:  Jimmy had chronic lymphocytic leukemia (CLL) and after diagnosis lived for two years.

Pete:  Nancy had a brain tumor and lived eighteen months after diagnosis.  I enjoy talking about my late wife—I enjoy the memory. Joyce, my deacon and Hospice care volunteer, remarked: 

Lose child you lose your future. 

Lose parents you lose your past of your history. 

Lose a spouse you lose your present.

Carol: Oh yes, you lose your present when you lose your spouse. I am adjusting to that loss.  Let me ask you both. This went so fast for you both. How did their illness and death catch you off guard? I mean I had from 2008 to 2014 to get used to my husband’s dementia and eventual death.

Bonnie:  Did it catch me off guard? Yes and no. I am a nurse. Jimmy was 59 and his illness was similar to his uncle who died with the same illness. I was expecting the genetic factor to kick in at some time. Everyone in his family said Jimmy reminded them of that uncle—he looked like him.

Pete: Yes, Nancy’s illness did catch me off guard. There was no known family history. She had had thyroid cancer surgery, a lumpectomy and both were malignant. Then fifteen years later an unrelated cancer popped up--but this time in the brain. It hadn’t been metastasized from the previous two cancers. The surgeon who gave the latest diagnosis cried with Nancy and me.

Carol: How did your Christian faith play into this caregiving experience?

Bonnie:  Music means a lot to me. One particular hymn had the words Come yet disconsolate. The choir sang it when seven students were killed in a tornado in Enterprise, AL. The arrangement was written after that Enterprise horrible incident. That hymn and arrangement spoke volumes to my heart. I was disconsolate.

Carol: Our faith does give us insight when we suffer, but, really, how hard was it to be your spouse’s caregiver?

Pete: Very hard to see her ill and to go downhill. Nancy became very fearful. She wanted me there all the time. Once I tried to go get a haircut and she called three times on my cell phone before I could get to the barbershop.

Bonnie: I remember when Jimmy wasn’t able to keep our financial records and kept going downhill. It was devastating for me. I was 54 and as a nurse I knew when I found the lump in his neck it was not good.  Initially they thought it was the chronic type, but within 6 months the oncologist decided it had progressed enough to treat it. My husband had chemo then. My way of coping was a bit of denial because I felt I had control--I was a nurse. I could draw his blood. I could take it to the lab. I disassociated myself from that part—it became almost mechanical. 

Finally we did go to M. D. Anderson Cancer research in Houston, Texas. As I watched Jimmy decline, I recognized the end-of-life progression. I was told if he didn’t get platelets, he would die. After coming back home, a visit with his dad was gratifying. His daughter wanted to be with him until the end and she told him she would be okay and he winked at her. Jimmy lived five days in Hospice care after he came back home from Houston.

Carol: So while he was in Houston, you were away from home and support of family and friends. How was that, Bonnie?

Bonnie: While we were in Houston, talks on the phone with my sister, close girlfriends and church members were of great comfort. It seems when we became downhearted, someone would call. Email 

with encouragement lifted our spirits and we could read them again 

and again.

Carol: Bonnie, what about after Jimmy died?

Bonnie:   After Jimmy died, I withdrew and became depressed. I did not allow the church to nurture me. I felt like I had to mourn. I became drained. It was too exhausting to interact with people, so I sat at home and did not interact. I was immobilized. Within the first year Jimmy’s aunt took me on a trip to Scandinavian. A ray of hope came in.  After two years I started remodeling my home. After five years I moved to a patio home.  Gradually I got back into life.

Carol: I can learn much from your journey.  I need to be determined to get back into life. When you started remodeling the house and went on a trip, you got the resources to move on. I need to do that as well. However, in my case, it is not remodeling, but getting the house ready to sell. Life does go on.

Let me ask Pete. I am doing my counseling dissertation on the church and caregiving. How did the  church help you in this journey?

Pete: Our Sunday School class fed my late wife and me for 18 months. Why I even had two refrigerators full of food when she died. Another church in the Huntsville area had an adult day care called Trinity Friends. Even when she was paralyzed I  took her to that day care.  I had a car with butt-level seats so she could easily get in and out of the car. She finally wanted me to have respite so I could do errands while she was at that day care.

Carol: Brain tumors start to have much in common with Alzheimer's. How did Nancy's mind change?

Pete: Nancy had trouble naming things. She could read a storybook to our granddaughter, but not communicate. She lost words before she lost her short-term memory. We just don’t understand the brain. In the last month Hospice was there, she never had pain. My two prayers were answered—that I could take care of her and that she wouldn’t have pain.

Carol: What was your grief like, Pete?

Pete: When she died, I cried, but I felt I wasn’t alone. I got over 2000 cards and letters and a deacon and Hospice ministered to me. I went to a weekend seminar on grieving. At that grief session I learned from the Hospice chaplain that it’s okay to grieve. This engineer (me) understood the process more.

Bonnie:  I also went to that weekend session where I witnessed other people’s pain in community and how everyone was dealing with the pain. It was comforting. Also the Hospice social worker helped my children. My girlfriends helped me get back into life. I started volunteering by helping with respite care  at our church.

Carol: Like you two I have been in a grief program. I am determined to move on and am planning to sell and move. Speaking of moving on, you two caregivers married!

Bonnie: Yes, and our families have blended well.

Pete: I got the daughter I never had before. However, at one time we had three houses and two motor homes.

Bonnie: I had been visiting Nancy while she was ill and apparently she like me. I saw Nancy’s inability to communicate when I delivered food to her.

Pete: Apparently Nancy had told a mutual friend that I should find someone like Bonnie. After Bonnie and I were engaged, we learned that news.

Bonnie: We did not know this until after we were engaged!

Carol: It is so exciting how you two have forged a new life together. One more question.  Is it uncomfortable now to talk with each other about those caregiving years with the previous spouse?

Both Pete and Bonnie said not at all and what a pleasure it has been to talk with both of them and to see how they have survived being caregivers, being widowed, moving ahead and forging a new life in their senior years! It is interesting to me that I have met these two new friends (and others) in the two weeks at the end of 2014 that I have been visiting with family in Huntsville. I am thinking positively about moving to Huntsville, Alabama. 

Can I too move on? Their stories inspire me to do just that!