I grew up with the standard issue two parents, and two siblings. Mom, Dad, Dennis, Me, Leslie. Now it's down to Dennis and me. Mom and Dad died of old age, and, tragically, colon cancer took Leslie when she was 53. Hospice played a role in each of their deaths, and every time it was completely different. Nobody becomes an expert in family members dying.
Dad went first, at 86. Both he and Mom lived in a memory care facility by then; in his case, it may have been Alzheimer's. We learned that it is hard to manage the elderly when they are mentally beyond reach. In a prelude to his end days, Dad either fell, which broke his hip, or his hip snapped causing the fall (the doctors couldn't tell, and didn't care particularly as it was irrelevant to what they needed to do). "Do Not Resuscitate" orders don't apply to broken hips. After surgery, he had to be restrained to keep him from yanking out IVs or worse. Because of his cognitive failure, nurses couldn't give him a heads up that it was gonna hurt when they needed to roll him to wipe his butt or prevent bedsores and as a result he'd scream absolute bloody murder. After that, he got maybe a month in a nursing home to learn how to wreak havoc in a wheelchair, but soon enough returned to the ER because his GI system blew out. This time the DNR applied. He was given a few hours to live, so they checked him into the hospital to manage his death.
Now Dad had an ornery streak all his life, and he didn't change just because his warrant had now been signed. He was going to take as long as he damn well pleased to die, which turned out to be five days. That first night in the hospital he apparently did okay, but then the wrong drugs kicked in and Leslie, my wife Crystal, and I witnessed a day of pure hell. Every few minutes (sometimes seconds) he would thrash or bolt upright screaming "HELP ME!" and/or "I'M FALLING!" And when I say screaming, I mean SCREAMING. The hospital staff was incompetent, or indifferent, or maybe gave just precedence to other patients not on the "destined to die anyway" list. It's also possible the nurses were wonderful but simply understaffed and overwhelmed that day. Whatever the reason, they did not handle the situation. When we finally got hospice involved, they were the solid gold angels from heaven that hospice is always supposed to be. They moved Dad to an inpatient hospice unit, and gave him medicines appropriate for a dying dementia sufferer, and he had peace. They gently comforted us, saying, in essence, "relax, we got this." We visited as often as possible, and were able to sleep at night knowing he was in good hands.
Report Card: Hospital F, Hospice A+.
Leslie already had cancer during all of this; she fought it zealously until one day a couple of years later she was rushed from her office to the ER. Then in and out of the hospital for a few weeks until she ended up in the same hospice unit Dad had been in, which understandably freaked her out. That was notgoing to fly, and so we all met with the hospice staff. Again, these people knew their onions, and quickly determined that the best place for Leslie to be was in her own home. They delivered a hospital bed and supplies to her house within two hours. Dennis' wife Nora moved in, and the rest of us helped out. A hospice nurse came by regularly to do what they do. When Leslie passed, the hospice staff could not possibly have been more professional, compassionate, or wonderful. Again, Hospice A+.
"Relax, we got this."
Another couple of years passed. When I got a phone call last month that Mom had been taken to the ER after she'd stopped eating for a couple of days, I headed to the same hospital that had been so horrible for Dad. After talking to the doctors, we learned that her kidneys had shut down and she was not responding to treatment. It was clear that the process of dying had begun. Mom too had a DNR on file and this was not lost on the doctors. Or Dennis and me. For any readers who remember Terri Schiavo, when that story became national news my mom got a DNR right away. She told us that if we ever did anything to prevent her passing away naturally she would return to haunt us for the rest of our lives. Knowing her feelings and acknowledging she was 92, we agreed with the doctors' recommendations to withhold heroic measures. They checked her into the hospital and I began immediately to arrange for hospice care. No way did I want her to stay in the hospital that had ignored Dad screaming for a whole day. No, I wanted inpatient hospice to manage her last days with dignity.
Here's what happened: this time the hospital was stellar and it was the hospice folk who pretty much sucked. I've had better experiences with harried airport TSA screeners.
In fairness, part of the frustration in working with hospice this go around was the hurry up and wait reality of anything to do with hospitals. So many moving parts: the hospitalist, the nursing staff, the blood testing lab, the hospice players, none able to communicate in real time. Every determination had to be put on hold until somebody could be tracked down for some missing piece of data. Then lather, rinse, repeat.
Hospice sent a social worker first. I know plenty of social workers and have always had nothing but the highest respect for them. Miss Hospice Social Worker 2019, however, didn't fit the mold. She came across as being more about her snazzy shoes and check me out wardrobe than dignified care for the dying. For whatever reason, she said that Mom would have to spend one night in the hospital before a hospice nurse could evaluate her for inpatient hospice admission. Maybe it was true, but I wonder if she got this policy information out of an issue of Cosmopolitan. The following morning, the promised hospice nurse barged in, yammering a mile a minute at Ethyl Merman volume then not listening a whit to anything anybody else had to say. After a solid 12 seconds of observation, she opined that Mom still had lots of spirit in her, might live for years yet, did not meet the "qualifications" for inpatient hospice, and should go back home for hospice care in familiar surroundings.
We pointed out that Mom had no "home" to speak of. What is home to a person with dementia? Mom lived in a memory care facility with all the charm of a drive-through car wash, and she retained zero sense of familiarity with any of her surroundings anymore. No, we contended, "home" could not be an option when home did not exist. Not to mention her kidneys had, you know, shut down. Nurse Mile a Minute offered no sympathy whatsoever and Fashion-girl social worker simply fluttered about uselessly. They flat-out refused to consider Mom for inpatient hospice. It was like trying to talk to Trump about anything other than himself.
One thing in Mom's favor: it was now late on a Friday so any potential transfer would not likely occur until Monday. In the background of all this debate, the hospital nursing staff calmly, unobtrusively, and gently attended to Mom's every need with Florence Nightingale aplomb. The good doctor agreed she needed 24/7 oversight and stated he had no problem keeping her in the hospital. Realizing that there is more than one hospice provider in Richmond, Dennis and I agreed Friday night that first thing Saturday morning we would contact another service. In the event that Fashion-girl and Nurse Mile a Minute managed to get their acts together enough to reconnect with us, we'd inform them their blatant lack of service would no longer be required. As it turned out, we didn't have to do this. Mom passed away peacefully in her sleep that night. So much for Nurse Mile a Minute's diagnosis she still had spunk and could live for years.
So this time it was Hospital A+, Hospice F.
Three of my birth family members have passed away in a period of five years, all with unique circumstances. Hospice aided two of them beautifully, so let me be clear: Mom's chronology has not reduced my opinion of the amazing work that hospice does. Hospice is fantastic. Human nature and human frailty, however, can play a part in every facet of the life experience up to and including the death of loved ones.
I recognize that I am being uncharitable in my descriptions of Fashion-girl and Nurse Mile a Minute. Perhaps they were doing exactly right and going by the book and I became judgmental because I wasn't getting exactly what I wanted exactly when I wanted it. Perhaps. Still, the apparent indifference and a lack of listening by the hospice clucks assigned to Mom's case made her passing shittier than it should have been. Clichés come to mind: getting those two dummies assigned to the case was just "the luck of the draw," and "two out of three ain't bad." The saving grace was that, in their unsung way, the hospital doctors and nursing staff did what we wanted hospice to do, magnificently. They provided Mom the standard of care everybody would hope to see for loved ones when they need it most. I was too busy chasing another goal to recognize it while it was happening.
I thought I had become an old hand at the death with dignity rodeo. Turns out there is no such thing. It always stinks, but it's different every time.
