An article in The Guardian details Fanny Johnstone’s experience caring for her father in the last year and a half of his life. “I wouldn’t have missed it for the world’: 10 things I learned when my father had dementia.”

It is a healthy and generous story, rich with laughter and grief and kindness and family support. I wish my experience had been like hers, but it wasn’t.

In May of 2002, my mother drove the six blocks to the Post Office to pick up her mail and realized she didn’t have the strength to get out of her car and walk into the building. She drove home and crawled up her steps. I was in Georgia at a writing workshop, and because it was Memorial Day weekend I could not find an earlier flight so it was three days before I could get home in time for her spine surgery.

Gary and I were her primary caregivers and like all the people I know who have done this and the many more I do not know, this was a difficult period. Providing end-of-life care for someone you love is inevitably difficult. [“Difficult” in this context is a euphemism for painful, soul-destroying, unbearable.]

Mom had set the example for me about finding solace in books. Early on I tried to find a book that was helpful, books about caregiving experiences like mine that would tell me how to better cope. There are many books written by care-givers, usually about the last days they were with their parent, about estranged daughters who reconcile in the last weeks of their mother’s life. [Mom and I were never estranged.] Siblings who come together to care for a parent. [My brother accused me of lying about her condition and seldom visited. He drove over and set up her computer twice in five years. Gary brought her coffee every morning for most of five years.] There was a notable self-help book that listed warning signs of caregiver distress. [We checked every darned box.] And many, many loving stories of the last two weeks or month of life.

In her last ten years, I went from talking to Mom daily to seeing her daily, to a rigorous schedule of visits and support for the last five years.

Those five years almost killed me. Finding meaning and hope over a few weeks [as was true for the books I found] is not the same as working full time at a demanding job while caregiving for years. Livingstone did the good work for a year and a half. I honor her and her family for that, and for moving close to care for her. Her essay would have been helpful to me while Mom was dying.

There were times very like Johnstone’s. Mom and I laughed and teased one another in ways only we understood. She finally came to love Gary. [I think she’d wanted me to marry money, and that was never my goal. I married a man who loved me and who helped me be a better person. I think Mom could finally see that wisdom. He gave her the care he would have given his own mother, kind in a way few are able to be with someone who is dying. Attentive in a way her son could not manage.] She had always been guarded about her life and family, but in her decline revealed secrets and the answers to questions I’d had since childhood. She held the hand of her grand daughter-in-law for over an hour while in the hospital, believing Kerris was her sister Marcia who had passed several years before. She was delighted that my brother was on the same antipsychotic meds she was on. [How could that be a good thing?] And she gave up on stuff. A collector as only a child of the Great Depression can be, when she moved into assisted living the last time, she declared she didn’t care what she brought with her. “Whatever you think,” she told me. She was not sad about that.

Gary and I cared for her, mostly in her home, but also back and forth to hospitals and in and out of assisted living and nursing facilities. We drove her to doctor visits and uncounted times to the ER, usually for constipation or dehydration. Her doctor declared to me that she had dementia. We changed doctors. The ER would never keep her overnight, not even when she had a concussion and I lay awake on her sofa, unclear what I should do. She refused to move into our house so we drove to hers several times a day, at least three, sometimes five or more. Sometimes we were annoyed, anxious, too tired, and resentful. Mostly we worried, shifted our schedules around, and remained in close contact in a time before cell phones.

Over those five years my brother stopped speaking to me and mom fell in love with a married republican Texan who cared only for sport. [A committed democrat her entire life and she decided she liked Lou Dobbs, and of course, she read books about the history of baseball. The argument could be made for her losing her mind. ]

During one ER visit, a resident with eyebrow piercings asked if I’d ever seen my mother’s spine. I hadn’t. She put up the Xray: “It’s a wonder she can sit up at all.” Mom was in terrible pain throughout those years. She had initially resisted painkillers, but had twenty-six medications in her drawer by the end.

Our last Afghan Hound died during those years. We got a new dog, our last, the Saluki Yeti who Mom liked. The cat died and another showed up. Alan and Ian graduated from college. I earned an MFA while teaching full time. [How did I do that?] We emptied her house when it sold. [I had designed that house and she’d promised to leave it to me but then wanted cash in the bank.] I quit advising yearbook. [To this day, Gary expresses gratitude for that.] Sometimes I was suicidal, mostly from physical and emotional exhaustion, but I suppose I must have seemed fine to others. When I asked a psychiatrist friend for a therapist recommendation, she got back to me three years later, did I still need a referral? I told her I was okay. [I lied.]

In the last days of her life, Mom said she was sorry she was “mean” to me. I told her that was never true. [I lied again.] She thanked me for “always doing what I asked, even when I know you didn’t approve.” [I cried.] She told the night nurse about her horses, a dream. Mom never had horses any more than I did.

My mother was a kind and smart, orderly woman who always did the opposite of whatever advice she was given. [My dad used to complain about that: “Why ask me what you should do if you always do the opposite?” She’d say, “I don’t know what I want until I hear someone else’s opinion.”] For almost the whole of her life, she had a knack for putting things right for others, offering compassion to friends and co-workers while running Admissions Eval at the University of Washington, and in sorting out the distress of others, the mess of paperwork. Many people cried on her shoulder; many accepted her gentle advice with gratitude. Ferociously independent, this determination got her through hard times and difficult situations but did not serve her well in those last years. She would not exercise or move in with her daughter or clear the floor of her house to make moving about safely [broken hip] or permit a reading lamp to be moved closer to her chair [she could not see the page] or admit to her son that she had not climbed stairs unaided in three years when she visited his home that last Thanksgiving. She charged right up those stairs. Gary and I were the ones who took her to the ER the next day. She was always in the ER after his visits, but she cried when he didn’t visit or call. She broke both hips, an arm, her cheekbone from falls. She lost her mind. Who to blame for all that? There is no blame. It’s what happened.

I gained a lot of weight while caring for mom. She died in the week after my MFA graduation in July 2007. By August I’d lost it all and a fellow-teacher asked me how I managed to lose that weight. “Grief,” I said.

Do I need to say how much I loved my mother? Do I need to share the stories of my childhood, of mom teaching me to edit my work, of her appreciation for art and good novels and theater and dance and ice skaters, of the many people who miss her for her generosity and advice? She was a sweet person, the child of divorce and a single working parent. Some things she was hard-pressed to forgive or even admit, but she was a good mother and friend. I miss her.

I did not write anything new for a long time after her death. We held on for dear life because life is dear. So was my mother.

My sixties turned a page.