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What Happens After Tomorrow? Planning for the Unplannable


This is a tale in two parts.  It’s about getting sick and/or old and not being able to care for yourself.  Part One is about my mother in the last years of her life.

My mother was a hale and hearty woman, the only member of our family who worked out regularly, didn’t smoke (anymore) and had the single daily cocktail the experts now recommend for women.  I fully expected (actually, I demanded) that she would live forever.  So when she told me she was getting something called Long Term Care insurance, I was perplexed and not a little annoyed.  That she would pay for insurance in case she got sick seemed like she was planning to get sick.  Where was the power of positive thinking she had always espoused?  And where, for heaven’s sake, was the woman whose parsimonious spending habits were formed during the Depression?

I didn’t get it, but it wasn’t mine to get she told me in those ‘no uncertain terms’ voice of hers. Even healthy, or perhaps because she was healthy, she wanted to make sure that she was taken care of, protected, when the day came that she couldn’t do it herself.   My parents had both been from the school that Life Insurance is a necessity, and this was just one more form of it a person had to have. So I was polite when the agent came to sign my mother up and even somewhat gracious when adding my signature as Witness to the form.

Some years passed and with time and age, my mother’s feelings about her financial security changed as well.  She started to keep things close to her, to not want to throw away cracked cups and shirts that were somewhat shabby.  And she started wanting to keep her money close as well.  It was during that time that she told me she was dropping the Long Term Care insurance.  I didn’t pay much attention because of course I hadn’t thought it was important in the first place.

Then my mother got sick.  Colon cancer. The time from her diagnosis to her death was only several years, but it became another lifetime for me. When the doctor told me my mother had cancer, my response came without thinking, “She brought me into this life and I’ll take her out.” So I left the PhD program, my dissertation and my teaching position in Pennsylvania to move back to California to be close to her. The voice in my head throughout all this was my late father’s:Take care of Mom, he kept telling me over and over again. Take care of Mom.

When I could see that living in the same city wasn’t close enough to care for her, we bought a duplex so my husband and I could live on one side and she on the other.  Suddenly I was in an unfamiliar role: parent to my parent. It wasn’t a good fit. Even worse, my mother was still very much my mother, so there was a dual relationship going on. We were each at times operating as the parent and/or as the child. A lifetime of reifying my mother’s words and wishes made me hesitate whenever I had to step into that parental role, A lifetime of being obeyed made her resent my usurping that place. The situation deteriorated along with my mother’s physical and mental state and finally, it was time for my sister and brother-in-law to step up.

My parents had been caretakers for my brother-in-law’s mother in her last years, so there was precedent for his taking on the financial responsibility for my mother’s care. The four of us met for dinner at a restaurant in a beach town midway between their house and ours. There we agreed to the following: I would take total responsibility for the day-to-day care of our mother; my sister and her husband would pay for any and all help. That sounds cut and dried, but in fact, it wasn’t.

Balancing my mother’s condition and her need for care with her need for autonomy and some quality of life was never easy. There were days when my mother was her old self, and I thought, “I can do this.” Like the day she called me into the garden, to deliver her pronouncement on her future: no chemotherapy. Instead we would spend her remaining time “making memories.” Some days this was possible; other days we would get trapped by the vagaries of her condition. We’d get all ready to go somewhere, but the effort would exhaust her. Or we’d actually get somewhere, like a family dinner at a restaurant, but midway through the meal, her condition would worsen and we’d have to leave the party.

When she began to need help during the night, we hired a nurse’s aide. And then that help became a twenty-four hour thing. There are agencies that furnish these aides, who are on the lowest rung of the health care ladder. These women have left their families in the Phillipines or Asia to care for ailing Americans, and predictably some of them are excellent, and some not so much. Tonya was the aide who was with my mother the longest, the one she and I trusted the most, the one whose name I still recall. I was grateful to her and the other aides because they did things for my mother that I couldn’t do. In that, they allowed me, for the most part, to be the gracious and warm and loving daughter I wanted to be.

When hospice began, another load of workers came and went on my mother’s side of the duplex: doctors and nurses and social workers and spiritual advisors. My mother hated the latter. I think basically that she was pissed off that she was dying, and she didn’t want anyone to interfere with the way she intended to go. My mother was like that, strong-willed, determined, used to being in charge.

My mother died some two months after the doctors had given her one week to live. I knew she had long had a fear of dying alone, so I sat at her bedside, held her hand and just talked her. I told her how much I loved her, what a terrific mother she had been and how much I would miss her. I told her it was time for her to go. I was ready; she was ready. When Tonya tried to give her morphine, my mother closed her mouth tight, and I had to laugh. She was, as always, doing this on her own terms. Eventually she stopped breathing.

I lay down beside her for what I knew would be the last time. I was crying, yes, but I was also jubilant: I had done it; she had done it; we were, to the end, a good pair. What I was also certain of at that moment was that my mother, who had guided me through all the major events of my life, had just taught me the final lesson: how to die, and how not to be afraid of it.

Since then, I’ve realized how much of that was made possible by my sister and brother-in-law being able–and willing–to foot the bills. They were, in the end, my mother’s Long Term Care insurance. While I’m not, thanks to my mother, afraid of dying, I am aware that I don’t have the family resources she did–and that’s scary.


Am I the only one starting to think about how I’m going to live when I can’t care for myself? Tell me where your thoughts on on the topic. Did this post make you want to close your eyes and go to the next blogger? Or do you already have some idea of what you’re going to do. I’m looking for ideas, and next month I’ll write about what I’ve found out, what I’m afraid of, and how I feel about the whole topic.

ABC News

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