My mother died in 2008, at age 75, of aplastic anemia, a blood disease more commonly found in employees at industrial solvent facilities than in someone who was an R.N. and a stay-at-home mom.
Part of the leukemia family, aplastic anemia is when your bone marrow simply stops producing new blood cells. All of them. Treatment is limited, and the most effective option, a bone marrow transplant, is not performed on patients older than 65.
Both my parents struggled through a nasty flu in 2007, and my mom just couldn’t shake the fatigue and loss of appetite afterwards. After many months of testing, she finally got the aplastic anemia diagnosis. “This would make more sense if I had worked at American Aniline,” she complained, referring to a local chemical plant that had closed in the 1970s. But it never did make sense; like most cancers, there was nothing you could point to, or, more importantly, blame.
My parents moved to a very small town in rural central Pennsylvania in 1960, a few months after I was born. Our town, a mill town, had a church, fire hall, post office, general store and an elementary school. Everything else was 7 miles away, and still very small-town. No big-box stores, no malls, very small (but adequate) hospital.
Her diagnosis meant an initial round of chemo-like treatment and blood transfusions. The specialists, better medical care and facilities were 40 miles away. As the disease progressed, my parents proceeded to drive weekly to these appointments. My father – recently diagnosed with COPD – did all the driving. As mom no longer had the energy to go to movies or shopping, nor the appetite to go out to eat, and the risk of infection grew, he learned all the scenic routes between home and hospital, to give them more time out of the house. And in central Pennsylvania, there is plenty of scenic going on.
He later put these drives – thousands of miles when it was all said and done - very high on his list of favorite things they did together, despite the circumstances.
One thing they apparently did not talk much about was dying.
My mother was an intelligent, well-read, take-charge, opinionated, organized woman. In our circle of friends and relatives, she was the one who organized meals and household help when people were impacted by death, injury or illness. During the periodic floods we had the in the area, she did all the wash of affected friends and dragged us out to help shovel river mud out of living rooms. She just dealt with reality and figured out how to move everyone through to the best outcome.
But she couldn’t deal with this. She refused to discuss prognosis, care plans, hospice and funeral arrangements, even when it became apparent that this was the route it all would take. My dad asked. I asked. I am sure my brothers and some of her close friends asked. We were rebuffed, redirected or met with a silence so enormous you could almost see her inability to imagine or frame the reality of her illness and decline in any way that she could handle.
But then morphine happened.
After several hospitalizations for infections, it was clear that hospice would need to be arranged. Unlike most people, she did not want to go home. So we moved her to a hospice facility that was part of the hospital. The staff was excellent. They recognized that mom was scared and anxious – and who wouldn’t be – and recommended a small, daily morphine dose in additional to the anti-anxiety medication the hospital had already been giving her.
My mom on morphine. Hoo boy. She talked. And she talked and she talked and she talked and she talked.
I stayed up two nights in a row, holding her hand, while she talked. “Apparently we’re having a slumber party,” I said to one of the nurses. Only about 30% of what she said made any sense at all, but if I dozed off in the chair, she would tug at my hand. At one point I actually told her to shut up, thinking I don’t care how guilty I will feel if this is the last thing I ever say to her – but she said “No.” And kept talking.
After night two, the nurses took pity on me and started giving “Chatty Cathy” - the nurses were calling her that, not me (and no, her name isn’t Cathy either) – “something to help her sleep.”
When my brothers arrived (at the time one was in L.A. and the other in New Orleans), we started taking shifts. We would sit by her bed, chat about what we were up to, what my kids were up to, what would we have for dinner. She suggested an Italian place, described the food in a way that made us all crave Italian food…only to find out the place did not exist. Perhaps it was a place in my parents’ hometown? Dad had never heard of it either. Many of the conversations went that way.
We would order take out (from a local Italian place that DID exist) and sit in the tiny hospice kitchen, and laugh about whatever odd or funny thing she had said. And we would discuss what happens next, but there wasn’t much to discuss. We didn’t know what mom wanted.
Then my youngest brother and I were at her bedside one day and she said, out of the blue, “Maybe you can have a party.”
We both looked at her and then at each other. She continued, “You know, when I’m gone. You could have a party. Invite the Nelsons.” The Nelsons were long-time family friends – good friends, but an odd choice in this context – and my brother and I struggled not to laugh.
“No church service,” she said, in a voice that, while whispery and a little addled, encouraged no disagreement. “Those are always so depressing.”
“And a band,” she said after a slight pause.
At this point my brother and I did that little snorty thing, when you are trying not to laugh but can’t help it, and you could pretend it was a cough if you had to.
We waited for some elaboration. Mom dozed off. My brother and I struggled with the giggles. He whispered across the bed to me “Do you think she means a marching band?” More snort laughing.
A few days later, she encouraged us all to go back to our homes. We did. Less than a week later, she passed away peacefully with my father at her side.
He chose to have her cremated. And we had a party. The Nelsons were there. And we had a band.