A welcome-home toast (with n/a wine 😉 )! Left to right, that's me, "GrandDavy," my sister, and my longhaired son in the back.
Hello there, Reader,
After sixteen nights in the hospital followed by nineteen nights in a very-nice rehab center (praise be for that rehab center), my sister and I, along with my son, brought 87-year-old "GrandDavy" back home following his stroke six weeks earlier.
We spent every night with him in the hospital, and in the rehab facility, too.
Because...
We did this in the hospital because after the stroke, our stepdad was disoriented, confused, and frightened. He needed our company, for one thing, but also our advocacy and even protection in the hospital.
We did this in the rehab facility because our stepdad still wasn't fully oriented, and still had restlessness in the night, so we were there to help him settle down when that happened. As well, we knew he would heal better with our presence. We also continued to be his advocates and partners in his care.
Not our first rodeo
Our stepdad's stroke wasn't our first medical rodeo, so we knew to be very present at both places.
We knew to be partners with the system rather than hand our stepdad over, especially in the hospital. And since my sister is an absolute genius when it comes to understanding medical-speak and terminology, thank the heavens, we weren't entirely lost in a sea of medical mystery.
We were ever so glad and grateful for this hospital's role in saving our stepdad's life, let me tell you. The American medical system really shines in an emergency, that's for sure.
It's the after-care that's not quite as shiny, though.
[I have a feeling that you have some of the same frustrations as I'm about to express, even if you're in the medical field. In any case, today's email isn't all dark, so don't fret while I analyze some of our experience.]
The robot
We found that monitors and attachments of all sorts play a big role in someone's care. We found the staff hasty to sedate our stepdad (and also restrain him) at early signs of agitation or unrest, which we manually curbed unless we couldn't mitigate the restlessness any other way (though we refused to restrain him). As it turned out, the most effective remedy was soothing, hand-holding, and just being there, human to human.
After those first three nights in intensive care, our stepdad was moved to a unit that was "three to one," meaning three nurse teams (two people) per patient. However, we didn't expect as much hands-off care as we witnessed.
Like I said, it was the monitors, the gadgets, and even a robot (that got fired). The robot seemed to have a hairpin trigger and was relieved of its duties when my sister pointed out that the robot wasn't actually doing its one job, but instead was overreacting and therefore getting in the way of progress in the one area it was supposed to help.
The real problem, though, was that the robot took the place of the nurses' real-life attention in that one area. The robot was used as a replacement instead of an assistant. Of course, we all want people with us, not robots.
The system
We also realized that the hospital team was heavy-handed with medications. And unless we asked a lot of questions about the specifics, such as dosages, actual medications, and frequency, our stepdad was going to be heavily medicated during his stay.
The day before his stroke, though, our stepdad was walking around the block, messing around in his garden, and playing with the cats. We knew he was strong. We knew he had a good foundation going into this. We knew he had a lot to work with.
And we wanted to keep him naturally alert as well as naturally rested rather than suddenly an invalid. The stroke wasn't by any means negligible (obviously), yet we recognized right away that a good deal of recovery was possible.
Our stepdad didn't take a heavy load of medications before his stroke, nor did he take sleep medication. We questioned the benefits and risks of every medication and treatment.
We knew the hospital staff was glad we were there. They even told us it took a load off for them and that it benefited the patient. We trusted their sincerity. Yet we also knew our constant presence and interaction was getting on their nerves.
But plainly stated, we simply didn't trust the system. We met some great nurses, technicians, and doctors, as well as other staff who were wonderful.
But the system they're wrapped up in is another story.
The client
We've built a medical system that keeps the client at arm's length in a lot of ways.
(I'll write more on this "hands-off" thought another time—it's a whole 'nuther can of worms.)
It occurred to me that if our medical experts were to call their customers clients rather than patients, we'd all be humans together in these situations.
As it is, it's a hierarchy more than a relationship. But "client" implies respect both ways, not just one way.
Yes, we want someone's expertise and experience, but no, we shouldn't have to abdicate our brain, dignity, and innate wisdom in order to get the help we need. We have some work to do in this.
H-O-M-E
When my sister was pulling into the driveway with our stepdad riding co-pilot, my sister asked, "Do you know where we are?!"
He loudly, enthusiastically spelled out "H-O-M-E!"
Recovery and healing have now taken a new turn. As anyone who's a caregiver-at-home knows, it can be intense and demanding, even though it sure is good to be home.
So here are some little pleasures so far:
• Seeing our stepdad sit down in his favorite chair for the first time in thirty-seven days, and say, "Whew" in his slightly altered voice meant the world to us.
• Sitting in the sun on the deck for leisurely (albeit "minced and moist" meals for GrandDavy for a little while longer) breakfasts together means the world.
• Toasting with a glass of n/a wine at our first dinner at home again meant the world. (That's the picture above!)
• Watching our stepdad tell the cats (with his Boston accent), "You haven't seen me in a while because I haven't been here—but I'm home now" meant the world.
All these things together
We're navigating and negotiating how to follow this through. My sister lives in the same house as our stepdad, but I live three hundred miles south.
So we're figuring out how to get help, how to get supplies (a number of things take a hit after a stroke), and how to set the house up comfortably and still feel at home. My sister, my son, and I each bring our gifts to this project.
Our stepdad married our mom in 1978. He had no kids. I was fifteen, and my sister was thirteen. What man in his right man marries a woman with two teenaged daughters? We like to say we won the stepdad lottery.
We're grateful, we're worried, we're at our wit's end, we're strapped for sleep and patience, we're working professionally around the work of life, we're staying positive, and we're making the best of things.
All of this together
Yes, this too shall pass, but for now, here we are.
Prayers to you and yours.
And gratitude that you're on the other side of the screen today. Thank you for being here.
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