I wanted to let Jerry die, but I had a funeral to go to. Mike died first and arrangements had to be made. Jerry would have to wait.
I consider my term in 2008 as caregiver to my wife's father and uncle as one of the most rewarding periods of my life. The duties forced me to rediscover many qualities I had long forgotten: gentleness, patience, acceptance, comfort in the notion that we don't get to call all the shots in our lives and deaths, but that how we handle life's difficulties has a lot to do with how well we sleep at night.
My only regret about the experience came at the very end. My wife's father, Mike, was proceeding on schedule. The vital signs taken by the home health nurse didn't lie. Blood-oxygen level were dropping because his lungs weren't working very well. Levels of toxins in the bloodstream were rising because the kidneys were failing.
All this information allowed us to contact relatives for a final visit at home while he could still respond to their affections. Soon enough we began hospice care. No more blood pressure meds, no more exercises (which he really hated anyway). I squeezed oranges and mixed the juice with ice. I dropped tiny ammounts into his mouth with a turkey baster. I swabbed his lips with a wet sponge and applied creams all over his body. I learned how to administer a bath in bed, and how to change the sheets with a guy still in 'em.
My wife and I were proud that he died without a bedsore.
And die he did, soon enough, about a week after the start of hospice. I don't like the term "assisted suicide." It doesn't really apply to what we did for Mike and Jerry. We just stopped keeping them alive. There's a difference, but it's a matter of degreee, isn't it? Nevertheless, I was troubled by the recent HBO Film, "You Don't Know Jack." All those people in all that pain, the decision about their continued existence relegated to lawyers. I cringe at the thought.
As Mike approached his final hour, we broke the news to Jerry, and in doing so seemed to remove his need to keep fighting. Mike had always been the stronger of the two, but Jerry had infinitely more sense. Mike took great joy in visiting the bathroom by himself, even if it resulted in a welt on his head when he fell. So Jerry would follow Mike around, as if he would be able to catch him if he tumbled.
Apparently Jerry saw it as his duty to watch out for Mike, even after I started sleeping downstairs so I could catch Mike in his nocturnal wanderings. When Mike died, Jerry had no more reason to fight. We weren't aware of how much of a fight it had been. Until his final week, we had never administered anything stronger than aspirin. We expected he might live another year or more.
He did, however, complain more and more about his breathing. We brought him to the hospital against his wishes. We had promised him he would never be alone and we kept the promise. Even while we were at Mike's funeral, a relative skipped the proceedings to sit with Jerry. I went to the hospital later that day and a nurse told me he was doing fine.
I knew they had suctioned his lungs a day or so earlier. I didn't know exactly what that meant until later when I watched them perform the procedure. A plastic tube, about the size of a Bic pen, maybe thinner, was inserted into his throat. This caused him to gag reflexively. Imagine your reaction to a plastic tube going eight inches or more past your tonsils. Mucus is sucked up through a tube and into a bag. Jerry wretched and turned purple as the nurse continued on and off for ten minutes. When she was done he cried and moaned until he dozed off.
"No more...no more...."
I was laboring under the misconception that they could do something for Jerry that would allow him to be more comfortable when we took him home. I was wrong, and on some level I had known it all along. We had simply warehoused him in a hospital while we attended to Mike's funeral.
I pressed the doctor for specifics, how long has he got, a few months? He looked at me, incredulous.
"Jim, he doesn't have a few weeks. It's happening now."
I realized my wife's family was in the same state of denial as I had been. Everyone seemed to assume that someone else was in charge. When I relayed my conversation with the doctor, someone in the room said, "He can't die now. I'm not ready for this."
The comment clarified our predicament. We were in our own grief. Jerry's needs had been subordinated to our own. We talked a bit more. The conversation ended when someone said, "We promised him he would die at home with us."
I told the doctor of our decision. He immediately ordered an ambulance to send him home. He called hospice. They would be by the next day. Not good enough, I insisted. We called back. I got hold of someone I had worked with during the previous week while Mike was in their care. They remembered me. They remembered Jerry. They sent the drugs in a couple of hours by courier.
I began the droplets of morphine and haldol that evening. Every four hours. I set an alarm so I wouldn't miss a dosage. Around 2 a.m., after the third dose, I noticed something had changed. His breathing was still shallow, but he no longer struggled for breath. His eyes lost contact with this world for good.
I panicked for a moment, wondering if I had dispensed too much. I recalled the words of a hospice worker who had walked me through Mike's last few days.
"You really can't screw this part up. Part of him is already gone. Nothing you do will change the outcome. What you have done is ended his suffering."
I can't describe my sense of shame when they cleared his lungs at the hospital. However justified our circumstances with the funeral, we lost sight of his needs for a day and he suffered as a result of that.
I hit my knees when I saw his eyes glaze over and asked him to forgive my temporary bumbling, and the pain it had caused him. I held his gnarled hand in mine, noticed how cool it was and donned a stethoscope. His heart still beat. He was on his way somewhere else. And I have never before or since felt more at peace with the world than I did at that moment.
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Comments
Lezlie
That's what medical professionals are supposed to learn first and foremost. Somehow, they see death as harm. I never understood that since we're all going to die one day.
The end of suffering should be of paramount importance. You were very much aware of that. ARE very much aware of that. I think Jerry and Mike would tell you that your assistance in their care and their passing was a blessing.
Rated.
Bill--Talking to the doc later, he told me he thought we had decided to let Jerry stay in the hospital till the end because of Mike's recent passing. We could have easily left him there and ordered hospice care. In our experience, and this includes my own mother and father, hospitals did exactly what we wanted, once we told them what we wanted.
That someone, simply for crass political purposes, would be so heartless and cruel as to twist this sort of genuine caring behavior into "death panels" tells me all I need to know about them as a human being.
{hugs}
There are only two points I would make. First, as tough as it was to go through, or to watch, when they cleaned out his lungs it may have helped a lot keeping that sense of suffocating at bay. Second, the opioid you administered also likely kept that feeling at bay.
Those are both blessings, perhaps in disguise, but blessings nevertheless. As a pastor I have sat with many dying people and the worst death bed experiences have been with those who have chosen to have no palliative actions taken, sometimes by the one dying and sometimes by the family, and always by those who refuse to have hospice present.
Watching them struggle to try to breathe, whether conscious or not, is a grueling and awful thing to go through. I have literally watched them turn red, then purple, then blue before they died, gasping, mouth wide open in a silent scream. Terrible.
So, my dear friend, you did, in both cases, a favor to one you loved.
And, folks, PLEASE, invite hospice as early as you can. I cannot tell you how important that is. Months before death are better than weeks. Weeks are better than days. These people know what they are doing, what palliative care is about and why, how to prepare us for the loss we will inevitably endure, and how to ease all of us through this passage.
If you are religious you may think that your strength, the almost constant presence of the pastor, and your faith can get you through it just fine. My experience is that is seldom the case. The truth is we need to see hospice workers as those "angels in disguise" that they can be.
Great post, Jim.
monte
R
voicegal--Thank you.
Hells Bells--I always thought this story had universal appeal. Who hasn't watched someone get old?
Tom--It was a particularly noxious turn in the debate when that canard was introduced. They knew damn well they were lying.
Spud--We never expected Jerry to leave so fast. Three weeks before he died he could button his shirt, tie his shoes and complain that the soup wasn't hot enough.
Connie--The pros actually performed well. Their job is to provide care, not love. That was up to us.
Jane--I'm over it. We took 'em in for over a year. There are going to be mistakes. Sort of like raising babies.
Delia--In some odd ways, having two was easier. There was a certain dynamic between them. We worried when we moved them out of the house they had lived in for 60 years that they might freak out. But what the hell, they were siting in chairs five feet from each other in front of a TV watching Gunsmoke, so, really, not much had changed. I'm sure each took comfort from the presence of the other.
Monte--I tried to mimic Jerry's breathing to get a read on what it was like for him. One-quarter breath every 30 or 40 seconds. Not very comfortable. The lung clearing did indeed make it easier on him, but it's a helluva a price to pay for another day of sitting in a chair.
I appreciate your nod to hospice. I does NOT mean your loved one will be gone in a week. It just means they are interested in the patient's comfort first and formost, and aren't going to try to fix things. An example: Two months earlier, I took Jerry to a urologist who inserted a tube through the penis to allow him to urinate. I asked about getting a catheter inserted. He said the procedure causes long-term damage to the urethra. I had to wonder how long this guy thought Jerry was going to need his urethra. Hospice would have hooked him up straight away. Most people wait until death is around the corner. If I had to do it over, I guarantee I would have made the call much sooner.
Kris--If you ever get a chance, don't let it pass. There is nothing to fear from doing this.
junk1--Thanks so much.
You captured this so well.
I think you're being generous not blaming the hospital. They are the ones who know what a procedure entails and really should be communicating with the family, as well as with the patient. Well, I think you are heroically generous anyway. Mike and Jerry were lucky that you married into the family.
I second what Monte said about hospice, although in this state you have to get a doctor's statement that they patient has less than 6 months to live. My mother was in hospice. Night and day compared to my aunt's death.
I hope you have forgiven yourself, Jim. I think it's a pretty sure thing that Jerry never blamed you for anything.
Serinita--Thanks for writing. Everything changes once we accept that someone isn't going to make it and our job is to provide gentle comfort. Fighting back is painful and worth it, until it's not. A very tough call which needs to be left to families and loved ones.
Jeanette--I'm over it. Thanks for writing.
margarette--Thanks for the helpful observations and info.