My mother died in 2007. In 2002 when I was on the other side of the country at a writing workshop, Mom drove the two blocks to the Post Office and realized she was unable to get out of her car. Over the next five years, Mom had surgeries, falls, and was in and out of hospitals, assisted living, and nursing care. She would get home for a few days or a few weeks and then would be back in care.

During most of those years, Gary and I were here primary caregivers. We took her to the ER a dozen times, maybe twenty times. We made her coffee, we cleaned her house, we took her to appointments. We sat and talked. Particularly when she was trying to manage at home, we each stopped by several times a day. One notable weeks I had parents conferences and Mom went to the ER three times. She refused to move in with us.

One earnest colleague suggested at lunch that if Gary and I stopped doing everything for her, perhaps my mother would do more for herself. I had been moaning about Mom’s stubbornness and our exhaustion. We were not enabling her, but to someone who has not had that experience of caregiving, my complaints must have sounded petty. We did more and more as Mom had more and more trouble negotiating the ten feet between bed and bathroom, bathroom and her favorite living room chair, that chair and bed. It was emotionally distressing, physically exhausting for al of us.

I am a writer and reader, so by the end of 2002 I was looking for help in books. I found several memoirs about caring for a dying parent. The experience was uplifting, a reconciliation, sometimes even declared “beautiful.” These observations came from people who cared for their parent in the final hours or days or weeks of life. None of them involved months of care or a patient who refused to follow the advice of doctors, nurses, and physical and occupational therapists. What they had to say did not seem relevant to me.

I recall sitting in my house, upstairs near a window facing west, when I finally found a book addressing the needs of caregivers—family and friends helping someone to manage basic activities. It might have been a nurse who wrote that book. One chapter was given over to recognizing when a caregivers were in over their heads. There was a checklist.

We were drinking every night when it felt possible to do so, we did not sleep well, we had trouble talking to others about our experience. We were afraid to travel outside the county. The book suggested that if a caregiver checked more than one or two boxes, additional held was needed. The checklist filled more than a page and I could check every box. Gary and I found humor in that. We laughed at many things that were not objectively funny, such as the time we were on our way home from the ER and nearly hit by a bull elk crossing the highway on a second such trip in two days.

Gary spent as much time with Mom as I did. He loved Mom and she loved him by then. I suspect neither of my parents believed he was good enough for me. More often I have recognized it was the other way around. It is the greatest luck in my life that Gary has shared it with me. We could care for Mom because we did it together.

Two Weeks is playing on television as I type, a film starring Sally Field as a mother dying while her four children struggle to come to terms during her final 14 days and immediately after.  I had never heard of the movie before today, but entire television series premiered and ended without our notice during those years Mom was dying. We certainly would not have been able to watch it in 2006 when it first came out. It is a touching film, but it misses the hardest part of losing a parent.

It is not the death or the two weeks before death or distributing the ashes. The dying is hard, the decisions about care are painful: the last words exchanged, her body in the hospital bed, hoping to reconcile with estranged family members (that never happened)—all so very painful.

Most novels and films and television programs collapse the process of grief—the shock and guilt, denial, anger and bargaining, and depression, all the way to acceptance and renewed hope so very fast, in a timeline of a few hours or days or pair of weeks. I wish that had been our experience.

We worked through years caring for my mother, and we needed years after, to adjust to the emptiness where a dear person used to reside.

That is hardest.