Hospice Failed My Family
A bad situation was made far worse by the manner and words of one person.
Ground Picture | Shutterstock "While you think about your decision, I’m going in to meet your mother and work my voodoo."
Yes, these were words spoken by the hospice case worker assigned to help my mother find peace and comfort as she neared the end of her life.
Those horrible moments occurred five years ago and while they have never left my conscious mind, they were jolted back to the forefront last week as I watched my current favorite TV series, Somebody Somewhere on Max.
Summarizing that show would take too long, but what I will say is that it’s Bridget Everett’s character Sam’s vehicle to confront her past and current life with her family, after coming home to their farm in Manhattan, Kansas, to care for her dying sister. Grief abounds, and if you know grief intimately, you’ll understand that while it’s in the back of everything, other emotions, and events sometimes surface loudly so as to cause you — and of course the characters in this series — to act like there’s really nothing so wrong, nothing that can’t be laughed off.
You could call this denial, or you could say, with me, that life has a fascinating, sometimes disturbing, and usually unpredictable way of cluttering everything up on the inside. This is evidenced by the scene in the show when Sam must clean out her father’s barn, an action that apparently hadn’t been taken in a decade or two (I felt that pain for sure).
One deep experience with grief, we’d like to think, prepares us for the next one. Sure. That’s like saying that having a second child will be a snap, a piece of cake, a joy ride.
So when Sam and her other sister Tricia (Mary Catherine Garrison) head to the rehabilitation home where their mother, a stroke victim, is recovering, they are met by the director who gently, but firmly, informs them that the center can no longer care for their mother who, and I’ll say this as gently as I can, has proven to be a real handful.
Sam and Tricia are perhaps not totally surprised, at least by their mother being a handful. To the director’s credit, she at least has a hospital in mind that can take their mother and try to work with her through this particular transition. The hospital, though, is hours away, and while their mother thinks she’s going home, Sam and Tricia must tell her the truth — which Tricia does as plainly as I wish I could have done with my own mother.
Truth can coexist with grief but can never replace or quiet it.
So Sam and Tricia must drop their mother off at the hospital, and as we look at their faces, we know that they both feel like they are dumping and abandoning the woman who raised them.
I won’t spoil anything else about the story arc. Anyway, that scene where the sisters are told that removing their mother from the rehab facility is not an option but a necessity is the one that grabbed me; the one that caused the jolt of memory; the one that took me right back to a Saturday afternoon five years ago.
My mother had been complaining for a couple of months about her acid reflux, how bad it had gotten, and how it left her not wanting to eat anything. Doctors performed various tests on her esophagus, and her digestive system, but found nothing. Finally, they did a P.E.T. scan and discovered that the cancer we thought she had beaten in her lungs had fled to her liver.
Earlier that spring, when a friend of mine had been diagnosed with liver failure, my mother had said,
"Well, when your liver goes, that’s it."
Sometimes I wish I didn’t remember everything so well. Just sometimes, though.
From the moment I got the phone call about her liver cancer to her actual death spanned twelve days.
Our family drove from South Carolina to Alabama to be at her hospital side. This was a Thursday, and her primary doctor was telling us that with the enormity of the tumor and the likelihood that it spread to her brain, my mother would surely not make it through the weekend.
Of course, these words basically gutted me, but at least the doctor told us this in that firm but caring way doctors learn to adopt (or at least many do).
The hospital was willing to keep her through the weekend and make her passing as painless as they could.
It might have seemed moot at this point, but we decided to call in hospice, and initially, on that Friday, the hospice workers who came out were caring and supportive as they helped us through the filling out of forms and the decisions of palliative care. My mother was still alert, and even told all sorts of funny stories about her life to every visitor who came through her doors.
As endings, go, I thought, this one might be gentle. Of course, the conscious mind makes all sorts of bargains with nothing.
Saturday came and my mother’s condition hadn’t worsened at all. I remember thinking that I would gladly take whatever time we have because doctors really can’t say with certainty when a patient will pass. It surely didn’t appear that her passing was imminent, and everyone seemed to agree on this. And we were all getting such good care at the hospital.
So, as I stood in the hospital corridor while a nurse gave my mother a sponge bath in privacy, I saw a woman with a big bag wandering down the hallway, directly toward me. She asked if I was Mrs. Barr’s son, and after I acknowledged that, she told me that she was the official hospice caseworker for my mother.
While I wondered who the other hospice workers were, I heard her utter these words, not thirty seconds into our "conversation":
"Your mother cannot stay in the hospital. She has to be out by Tuesday, so you have to come up with a plan as to where you’ll put her next. It could be a nursing home — there are many in the area — or you can take her back to her home and care for her there. But you have to decide now because she must be placed and out of here by Tuesday."
I think I must have repeated her words several times, stuttering, and feeling as confused and frightened as I must have looked. But if I did look confused and frightened, that hospice worker either didn’t notice, or she didn’t care.
"But the hospital staff told me that they could care for her until she passes, and they think it won’t be long."
"That doesn’t matter. Once you call us in, we have to go through the procedure, and your mother cannot stay here. Now while you think about your decision, I’m going in to meet your mother and work my voodoo."
I don’t know what visceral reaction you get upon hearing the word "voodoo," especially applied to your dying mother, but in those minutes I felt frozen to the ground, paralyzed to the core.
I watched her go in, and by that time, my wife and brother had returned, and zombie-like, I mumbled the most recent turn in our lives to them.
Soon after, another woman, the hospice supervisor, appeared and she saw how shocked we all were, and in her words, "knew something had gone badly wrong."
And yet, both she and, the head nurse who soon appeared, affirmed, albeit much more gently, that yes, my mother would have to leave the hospital by Tuesday, should she still be alive.
After everyone had gone and we were back at my mother’s bedside, I got to see the flash of anger and spirit that my mother was famous for showing:
"Do you know what that woman said to me?"
I think you can feel my shudder, even now.
"She asked me what church I belonged to, and when I told her Spring Hill Methodist, she said, 'Well, I’m Baptist. Don’t you know that Baptists are the best?'"
We tried to reassure her that such statements were wrong and wildly inappropriate, which as I look back on it is such an odd conversation to have had with a dying Methodist woman. In a funny way, watching my mother’s outrage was almost comforting because, again, her spirit was still there, determined and steady.
While my brother and I stayed by her side, my wife and daughters began visiting all the nursing homes they could over the next day and a half. Each time they reported back to us, I could hear the dejection in their voices.
"Grandma would hate it there," my daughters said about every place.
Which, in the end, helped me make the decision to rent a hospital bed and bring her back to her own home. My brother and I agreed that we would put everything else on hold and care for her as long as we could, as long as she lived.
Which turned out to be another four days after we arrived home on that Tuesday. Hospice was still involved, though I demanded that the original caseworker be fired and someone else care for my mother. Everyone else who came to see her, to give her comfort, and on that last day to administer dosages of morphine, treated all of us with respect and dignity.
A few weeks after my mother passed, the hospice group sent a review for me to fill out. And so I filled out in great detail my complaint, my devastation as to how a bad situation had been made far worse by the manner and words of one person.
I got a call soon after from the director asking me what they could do.
Truly.
"What can you do? Make sure that that worker never does this again. I can’t tell you what to do, but I think she should never work with any family again."
"Well, she’s old school and had a lot on her plate that day."
Seriously, that’s what the director told me.
"Well, then why was she sent out to us?"
"Would you like her to call you and apologize?"
"Absolutely not. I won’t speak to her."
"Could she write an apology?"
"I don’t care … on second thought, yes, I think I need that."
A couple of weeks later, I got a written apology via the U.S. mail:
"Dear Mr. Barr, I’m sorry for anything I might have done to upset you. Sincerely…"
After showing the letter to my wife, I crumpled it up as tightly as I could and tossed it into the trash, something, of course, I could not do with my grief.
I would have thought that my anger had subsided and had been vented enough. So it’s unsettling and yet so very familiar to watch a moment on a TV series that feels so real, that allows our grief to find its expression again through watching the faces of two sisters who see and feel that life as they know it — despite its already experienced horrors — will never be the same again.
Terry Barr teaches Creative Writing and modern literature at Presbyterian College. He writes personal essays about music, culture, and literature at Medium.com and has four essay collections published by RedHawk Publications of Hickory, NC.