The Long Good-bye

Within the period of a little more than a year, I sold my tiny condominium in Southern California, retired, cut my income by a third, moved across the country to a house in central Florida about three times the size of my tiny California condo, bought a mobile home in Florida for my 84-year-old disabled mother, went back to California to move said mother into said mobile home, and took over primary caregiving for my mom. There are psychological instruments designed to predict how likely a person is to become seriously ill because of stress caused by excessive changes in her life. According to these instruments, I should have been dead by the end of that year.

I survived, however. You might even say I thrived. I navigated the changes and managed my emotions (well, most of the time) and moved on to create a new life. I was feeling pretty spiffy about myself and how well I was dealing with change. I even started writing a weekly blog about adapting to the changes many people face when retiring.

Then my mother had a massive stroke and I realized I knew exactly nothing about dealing with change.

The stroke damaged my mother’s already rather ramshackle body, but also scrambled her previously strong cognitive and communication skills. My own psyche was pretty shattered, but I had to be my mother’s brain and voice. I tried my best. Expecting an incredibly unrealistic standard of adequacy from myself, I plowed through fogginess and failure and frenzy to work with the professionals involved with my mother’s care. In addition to the medical care my mother needed, I managed a plethora of financial issues in the wake of her illness. While I was pushing my way through the tasks and decisions necessary, I realized I was also pushing through something else. There was a sadness so deep and so dense and so profound, it felt like everything I did, I did while swimming through a turbulent ocean of jello.

My mother was living her worst nightmare. As her body aged, she always said she could live with whatever physical impairments she had to face, as long as her mind still worked. After the stroke hit, she lived what she had dreaded for years. Her brain was broken.

For the first month or so after my mother started rehabilitation therapy, her situation started to improve. The advances were tiny, but I acknowledged and celebrated those small victories. At the same time, each day exhausted, overwhelmed, and gutted me. It was hard work to encourage her to do physical activities to maximize her therapy and come up with strengthening exercises we could do together. It took incredible concentration to listen and follow what she said. It took patience and respect to converse with her in a way she could understand.

Gradually and insidiously, my mother started losing her battle. She bounced from hospital to rehab facility to hospital to rehab facility several times. She became more and more frustrated. As she fought one infection after another, she became weaker and weaker. As medical professionals persisted in employing all manner of tests and procedures to try to extend her life, despite only the tiniest possibility of success, she became more frail and sad. She knew there was very little anyone could do to increase the time she had left. She could also feel the quality of that remaining life spiraling downward each day. For whatever time she had left, she wanted to be able to decide not to do anything she found painful, uncomfortable, or just plain annoying.

It wasn’t easy getting to that point. Because of the stroke, it was often difficult to understand what my mother was thinking and feeling. We had numerous sad, cobbled conversations about life and death after the stroke. These conversations were often difficult, but also productive and necessary. Eventually, because of those conversations and what I knew of my mother’s feelings before the stroke, I believed I understood what she wanted. What she wanted was to let go of trying to get “cured” and live the rest of her life with comfort and some modicum of control.

We consulted with a hospice organization. Hearing the word “hospice” initially felt like someone was prying a chunk out of my heart with a hot knife. Still, when I was able to wrap my mind around the idea, the hospice counselors were a huge help in explaining the program, giving me an idea of what to expect, and validating that the choice we were making was a reasonable, morally valid option.

My mother entered the temporary hospice house. I think the hospice house gave her time to recover from the exhaustion of trying to get better. Something clicked in her brain and she started to adjust to her condition. The hospice staff still believed her condition was terminal and they were still going to provide care, but they advised me that my mother needed to transfer to a skilled nursing facility.

The residence was not bright and shiny and new. The neighborhood wasn’t affluent. At times, I could hear other residents crying and yelling. Some of the patients were holding stuffed toys or baby dolls, clearly convinced that these objects were real. I’ve always said that, wherever my mom ended up, I hoped she would have a quality of life approximating or at least reflecting what her life was when she was living it fully. I didn’t want her to be the most able person and be surrounded by people who were living shadow lives. Now, I was leaving her in a place where she was living with people in just the situation I dreaded. Unfortunately, the gut-crusher was that she became one of those people before she ever got to the nursing facility. In fact, I’ve learned that is isn’t so much that people who move to nursing homes have a severely reduced quality of life. It is more the reverse. People who have a severely reduced quality life move to nursing homes.

When I checked on my mother once she was at the new place, she seemed okay…. calm and content. I was far from okay. My mother and I have always been closer than any other mother and daughter I know. I believe my mother always loved me more than anyone else in the world. Here I was leaving her in a nursing home. I felt so ashamed of my selfishness. It was the worst day of my life.

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