I think about my mother a lot. A flood of memories comes over me as Mother’s Day grows closer. My mom was a beautiful, strong willed, loving parent. Our house was the place all our friends hung out. My mom would hold court at the kitchen table and they would seek her counsel on dating and share their secrets with her. She died 32 years ago.

An initial diagnosis of breast cancer happened while I was still in college. She wasn’t going to tell me about her upcoming surgery because I was away at school. I sensed something in her voice on my weekly phone call and forced my parents to tell me what was going on. I rushed home to be there for what turned out to be a radical mastectomy. I acted as an advocate for my folks and came home regularly. My mom did great for 5 years. Unfortunately the cancer metastasized to her bone and eventually moved to her brain.

Mom wanted my father to be her primary caregiver and made it clear she would remain at home. During the remaining 2 years of her life the cancer ravaged her body and her mind. She would not allow us to get any outside professional help. She was weak and needed help with moving around, bathing, and dressing. She would let her kids help her minimally with some reluctance.

For both my father and me the most difficult challenge was the massive personality change that occurred when the cancer entered her brain. She became an angry, verbally abusive, aggressive woman. My dad had a difficult time dealing with it. So did I. She threw me out of my childhood home at one point with our provocation which felt so hurtful. I wondered how my dad could tolerate the ongoing abuse?

Incredibly for us on her final day on this Earth my old mother returned. I had told her my brother and sister were on their way from California and New York to be with her.  The doctors had told me she could die at any moment.  My sister, father, and I held a vigil at her bed and then it happened. She came back to us. There were smiles and words of love exchanged. To the amazement of the doctors she waited until all my siblings arrived that night and said her loving good byes to them. Then she peacefully slipped away.

I am much older and fortunately wiser now. I have the benefit of 40 years as a medical social worker and life experience. I have thought about what I would say to my father and my younger self with the benefit of that knowledge:

1. I would remind us that the mean person she became was not her. It was caused by the cancer, a disease whose symptoms she was helpless to fight or control. It is important to separate the medical condition from the person. I know that is hard at difficult moments. I remind myself of that when I recall that awful day she threw me out. I have come to understand and believe this is true. I choose to remember the loving mother I had.
2. My mom was young when she got sick. She was only 50 years old.  She and my dad never had a discussion about what she would want to happen if she became ill. No advanced directives were in place outlining her wishes about medical care, life support, or anything. It would have been so helpful to know her wishes and a source of comfort to us knowing we were carrying them out.
3. Finally I watched the physical and emotional toll that being the primary caregiver took on my father. He was almost 70 years old when he was fulfilling most of the caregiver needs for my mom. He told me multiple times that he wanted to stop or at least take a break but he didn’t. He was burned out, angry, and stressed out. Dad did not let us help too much because he wanted to honor my mom’s wishes. The problem was she was not thinking clearly due to her illness and the demands she was making were virtually impossible to fulfill. I would have advised him to take more respite time and get additional professional help on top of what we were able to offer my parents.

It is always easy to look back with the passage of time and think about how we might have managed the care of both my parents differently. The lessons learned from this experience helped my father and I as he aged and needed a caregiver. The directives were there as was many conversations between us that created a level of trust and understanding. We altered the level and intensity of care he needed as his medical condition altered with him and it was a collaborative effort among my siblings and my father. We helped him to die with dignity at age 96 feeling his wishes had been honored. That gave us all a measure of comfort that will stay with me forever.