Updated: Nov 1, 2021
I could have never included hospice in anything to do with taking care of my mother-in-law. Heck, I wouldn't even include the mother-in-law. Ma was my Ma, and that's it. Due to her diagnosis, we knew Ma would be coming home with us at some point. The "when" was the question. There was an understanding that I would provide her care. Without mincing words, I was scared that I would fail. I wanted things for her to be comfortable. I wanted her to feel like our home was now her home. I wanted her to know that taking care of her was not a task I was obligated to do. I was taking care of her because I loved her.
The day she came, everyone was on pins and needles. We hadn't expected her to come for another month. Her condition had taken a turn, and we knew we couldn't wait. But, the day she came, it felt like time slowed and our individual lives stopped. Our family entered into a bubble, and our only focus was Ma. Tina Maria Scott was a private and particular woman. To respect her wishes, we refrained from discussing her condition around her or others. Telling Ma, she was home with us on hospice was out of the question. Till the very end, she had decided she'd beaten cancer once she would do it again. We even made nurses take off their badges and give us paperwork out of sight if it said, "hospice care."
The first two months were a blur. Ma's condition seemed to stabilize, and routine began to set in. Life seemed to be balancing out, and then that balance was gone. I never thought I would have to pull away from a hands-on approach to caring for Ma. There came a point where she decided she did not trust me. Nurses, aides, and doctors tried explaining that this lack of trust or paranoia was sometimes a part of the process. I couldn't comprehend. The day I decided to back away, I went on a run, hit a summit, and cried. I felt like a complete failure. But, in hindsight, it was the best thing that could happen.
The family now had to pull together in a new way. Everyone had to jump in more intricately. Ken, who was very active with his mother's care, was also spending more one-on-one time with her. In that time, I watched my husband work through issues and resolve unspoken things with his mother. Our eldest son was now preparing meals, watching over her, adding items to her life to comfort her. Our daughters engaged more and helped where they could. Aids were called in. Granny, her mother came even more often soothing her during some of her worst moments. For me, I found a role supporting everyone else. I learned I didn't need to show Ma anything solely. It was a family effort with the discovery of this lesson another was on the horizon.
To everyone's surprise, Tina Maria walked downstairs. She draped her blanket over the couch and asked everyone to sit for a family meeting. "Daughter, why have you not come into my room to take care of me? Are you mad at me?" I was shocked. Eyes wide, all I could do was smile. Look at Ken, then back at her and meet her question with, "What?"
You would think I would have done my research on how brain cancer affects someone. Ma told us she didn't want to discuss her cancer diagnosis or have anyone look at her with pity or sadness. I determined in order to meet Ma every day with optimism I needed to stay off Google, Web MD. I understood Tina Maria had cancer I just refuse to see that this time around was different.
Ken seeing my confusion and understanding more than me about what was cognitively happening with his mother, placed his hand on my leg and squeezed. Turning to his mother he began to softly speak to her. Ken, explained the recent events to her. Included significant and minor details, repeated essential points as to why I was not as present in her care. His mother watched him, and I watched her. Ma tilted her head slightly as a curious child would listen to a story they've never heard before. She sat intently watching her son's words form, trying to grasp their meaning. I could now see what was right there in front of me. For the first time, I felt the aching of anticipatory grief. The levy broke, the blinders were off and I could clearly see we were losing Ma bit by bit, and no amount of care we could give could save or heal her. Ma hadn't accepted it but I had to. I assured her I wasn't mad at her and that I would be there for her to see. I went back to being hands-on in her care. Once again we found a balance that would last for a short while.