And why would you move to St. Louis?

I don’t wish to liveblog my mother’s last days, but I know a number of friends and family are compassionately wondering what’s going on and I know you read this blog, so here are some random thoughts about caring for the terminally ill and a little news of our family.

My mother’s pulse is continuously rising and she has an ongoing low grade fever.  She has descended into a coma and is perpetually asleep at home in her own room in a rented hospital bed.  My sisters and I have all moved into the house to take care of her and my stepfather Darryl.  We’ll stay here through her last days and then as long as it’s necessary to deal with the aftermath.

She receives family and friends who come to visit and sit with her.  In between these visits we do all the things you see nurses do on television.  We give her medication, we change her clothes and bedding, and we check her for bedsores.  As a nurse and the director of nursing for most of her professional career, my sisters have pointed out the irony that after her lifetime of working with and training professional nurses in how to avoid bedsores, my mother has to be cared for by amateurs who are likely to screw it up.  I would be thrilled if she would sit upright and yell at us for doing it wrong.

The other irony is that I have sworn, my entire life, that I would never return to St. Louis.  I know that somewhere my mother is having a delicious joy in my, at least temporary return to this place.

I have seen my mother’s struggle with death bring out the best and the worst in the people in the family and the people around us.  Petty material jealousies over who will get what seem either absurdly trivial, opportunistic, or downright cruel.  And yet I find it a convenient litmus test for a dividing line of family that can be trusted.  Those that have a list of "things they want" are relegated to the "outer circle".   When my mother was conscious and talking, she would occasionally ask people if they wanted anything from the house.  Most of the people that loved her, and most of the people around her, would say nothing, or "just sitting here with you".  A few had a shopping list.

There are also the more difficult relatives, who vent their unresolved issues or their bad manners into our space.  Part of our job is to find roles so that they feel less insecure.

And then there are the well-meaning acquaintances.  The number of times someone has told me that they hope my mother feels better are shocking.  One colleague got it right when she said she hoped that things, in general, got better for me.  The other is of all people, my mother in law, who said she was really sorry I had to make this trip for this reason.  I was there for her own mother’s funeral a few years ago, and I think this experience is still fresh in her mind.

Through all this I watch as our hospice nurse trains us in how to care for her.  She is an old friend from my mother’s days as a director of nursing, and she teaches us how to give medication, and about studies that measure brainwaves of coma patients to provide some proof that my mother knows we are here.  She shows us how to use the suction machine to remove phlegm from my mother’s throat, and explains that when she clears her throat, she’s not about to talk, that’s just a physical response.  She reminds us to close her eyes, that their opening is also not a sign that she’s awake.

There’s no nursing staff here 24/7, no strangers in the house.  My mother will not be changed, or vacuumed, or medicated, or turned by anyone who has not loved her for years.  Were this to go on for months, we might feel differently, but nobody seems to think it will and it would feel intrusive to have a stranger here.

In what is probably only one of the life lessons this experience holds, I rarely hear anyone in the inner circle talk about how they wished they’d spent more time with her.  There are no regrets in our little group, only a common goal of taking care of both parents.  I suppose experiences like this function as an instant judgement on your conduct since there’s no opportunity to fix anything you regret.    I feel fortunate not to have the sort of regrets that give people mid-life crises where they wonder if they’ve spent the last 20 years correctly.

I just now took a little break to try and give her the 5:30am meds without waking my stepfather.  Everyone around him is trying to steer him to rest without removing him from her presence.  He insists on sleeping in the same room, and so any noises we make wakes him.  We may order him to the couch to guarantee five continuous hours of sleep tonight.

But if he objects, I understand.