HOSPICE
If I had to do it over again, I would have called in Hospice months earlier. The remarkable strength of my father-in-law made that decision seem ridiculous. He could still walk. He pulled himself out of bed, grabbed the walker with his iron fists and made his way to the bathroom.
But Mike's kidneys were barely functioning. He would have died within 24 hours had I not called. We sent him to the hospital because of the untimely death of a nephew. My wife and I simply couldn't let Mike go the day after Brian's funeral, so we called 9-1-1 and they filtered his blood, buying him, and us, a couple of weeks. But it was time to let him go.
The alternative was dialysis for a 92-year-old man, permanent connection to a machine that acts as an artificial kidney. In hindsight, the decision to prolong his life for just a short time seems selfish. Taking any further life-saving action was unthinkable.
We called a hospice service, also known as palliative care. Say what you will about America's health care system, but this service, provided at no cost to the family through Medicare, is a godsend. They provide everything: a bed, oxygenator, 24-hot line, nurses who come to check on the patient and instruct the family on caregiving, and nurses aides who come in regularly for bathing and changing of sheets.
I made them send a nurse twice after midnight during the next week. I needed the nurse more than Mike, but they showed up and held my hand as I held his.
Hospice is approved when a doctor signs a form stating the patient is unlikely to live more than six months. Mike had defied the odds so long, it wasn't until he almost died that we considered hospice care.
The hospice service provides clergy and and counsellors, if needed. While Mike's doctor was still in the loop for any medical decisions, the service took charge of his medical care through doctors of their own. A nice result of all this is that they also take over all billing. All care is charged to them, including medications, which are delivered to the home. We never saw another bill.
Mike hadn't taken many medications, just a blood thinner and a couple of Advils a day. He had a prescription for Vicoden for pain, but it was used sparingly due to the constipation it causes.
On Day One of the service, a nurse walked me through the kit of medications they leave. There is a patch I can apply if his lungs get phlegmy. Swabs for keeping the mouth moist and clean. Cream for the skin. My wife's first job as a kid was at a nursing home, where she learned how to prevent bedsores. He would die without one, a remarkable accomplishment.
Then there were the pain meds, Morphine and Haldol. I used a dropper to apply a few drops every four hours to the tongue. Morphine is for physical pain. Haldol quiets the mind. I was terrified of having these in the house, least my addictive curiosity get the best of me. I was more frightened of the responsibility for dispensing the stuff.
I kept a log, which helped me keep track of how much I had administered and when. I skipped the middle of the night dose once (forgot to set the alarm) and it took most of the next day to get Mike back to a peaceful state. The end-of-life journey for some involves a great deal of agitation. Who knows what goes through the mind during these hours. Mike seemed frightened, and I was happy to administer Haldol to keep him calm.
I also charted his positioning in the bed. Up until this week, we had gotten him out of bed and walked him around the room several times a day, thus avoiding hideous bedsores. Once someone is bedridden, the primary job of a caregiver is to gently move him every few hours, apply lotion and use pillows to prevent any skin-to-skin chafing. One foot, for example, likes to sit atop the other, ankles crossed. A pillow between the feet prevents chafing.
So I carefully write down which side he had been on, back, left or right, and just follow the pattern to prevent any portion of the body from getting too much of the work. The simplest things are the easiest to forget. I would spend most of the last week in the room and was usually groggy. I found it helpful not to trust anything to memory.
I carefully charted his food and drink intake. Friends and family visited often and everyone, it seemed, wanted to give him something to drink or eat due to the visible dryness of the mouth. Fruit smoothies, a little water here and there, were given in the tiniest of portions. Enough to wet the mouth and throat. The body in this state goes into shut-down mode. It just doesn't need the stuff anymore, and doesn't know what to do with it if it shows up.
I made sure to relay the information from the hospice nurses to family members. The more we understand the better. I had assumed death was a thing that could be pinpointed. Alive. Dead. It can be a process. A nurse told me his mind was already on its way somewhere else, though the body still functioned.
This was helpful for visitors, many of whom felt obligated to "be there" when he stopped breathing. If you visited during the last week, I told them, you held his hand as he died.
I made a horrifying mistake around the third or fourth day. I couldn't quite get the idea of someone needing no sustenance. I had given Mike three or four ounces of Ensure for breakfast the first few days. I would bring the torso up into a sitting position, helping assure the food went down as it should and didn't hang around the throat and interfere with his breathing. I left him up like this for at least 40 minutes before laying him back down.
I noticed a rattling on the fourth day. Congested breathing. I left him propped up. Eventually I applied the patch which helps clear the lungs. He had been on his left and right sides during the night, so I let him stay on his back, lowering the head and shoulders half-way down.
He stayed like this until the nurse came to change the sheets around noon. We lowered the head of the bed and turned him onto one side. The Ensure breakfast poured out of his mouth onto the pillow. It had sat gurgling in his lungs all morning.
He didn't need it. He was on his way to another place.
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Comments
My best friend was a public health nurse who started a hospice in the central San Joaquin Valley. I was there with her when she died of breast cancer. So I am familiar with a part of what happens.
Your writing is so straight up and clear it makes it possible to read this without sentimentality and to hear what happened as it did instead of through a water bath. Remarkable!
Rated
Thumbed. You are not only an excellent writer, Jim, but a marvelous human being as well. :-D
I am saddened for the loss.
(rated)
You are very strong to have helped Mike like that. I don't know if I have that in me.
Delia--I was pretty wrung out by the time it was over. Brian's death had sucked the wind out of me and I felt like I was sleepwalking the rest of the way.
So much to do and think about so emotion is often suppressed. Sounds so very familiar, agitation and all. I was a hospice care giver for someone I cared about, in 2003. I marveled at the wonders of the service, which many pass on, unable to face the idea of dying.
I will get myself to write about it some day. Risa Denenberg has been writing about this here on OS; she is a hospice care-giver. Have you read her?
Thanks for pointing out that this experience is enriching. It is a wonder. It's like raising kids. You do it right because it is the right thing to do. They are part of you.
Well, I'm certainly not dry after reading this. I knew Mike was going to die in your story. I didn't know when, but I knew it was coming soon. You've gently warned us that it was coming.
But it still made me cry, for you, for Adele, for everyone who loved Mike.
I'm glad you got a second chance after feeling you hadn't done so well with your own father.
Bill's clock thing is neat. A different approach than most blog posts.
I had been sober only a year so when my Dad died. My Mom could have used a lot more help than I gave. He was sick for a long time.
Bev--Too kind. Thank you.
"grabbed the walker with his iron fists " You establish him vividly with this compact phrase.
This is honest, painstaking, and brilliantly written. filet indeed.
You are officially never allowed to disparage your ability again, not to me. Don't mistake my flamboyance for good writing, perforce. I admire and envy some your directness, the way you have magically displaced yourself into the background while yet providing personal, intimate observations. That is Art, jimmy. Trust your Voice.
And you are a very decent man.
I understand about that Curiosity thing, too. You made me cry at that point, for the honesty of it.
highly, highly rated.
I am quite pleased with this approach.
Tom--Interesting. I was never advised to increase the pain meds beyond the level needed to halt suffering. The absence of life-support measures would assure the end of life. People can be kept alive with dialysis, feeding tubes and ventilators. We made sure none of these things happened.
My mother was on the stuff for some time before she slipped into a different state. The nurses assured us she felt no pain, so we stopped them for the last few weeks.
I do thank you for writting about Hospice, a wonderful service which seems to relieve the pain and suffering of the folks left behind. I cry as I write this. It is a touchy subject for me. I may face it myself some day.
And as others mention, there’s much to learn from here. Thanks for this one, Jimmy.
I feel privileged to be able to read this work.