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"Your Caregiving Journey". A Somewhat Snarky Rant. [1]

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Date: 2022-09-06

Welcome to the Street Prophets Coffee Hour.

I was a caregiver for both family and paying clients for sixteen years. It was challenging and rewarding. It was also frustrating, exhausting, and in the end, heartbreaking. I learned a lot about how the American healthcare system works (crappy) and how family relationships and dynamics can change (bewildering) and how even the deepest, purest love can eventually get frayed and worn down.

I have no snappy single-word adjectives for that last one.

I actually started out cleaning houses for elderly neighbors back in Oregon. Our tiny town (McKenzie Bridge, population approximately 400) was at least fifty miles from the nearest city offering job opportunities. I needed to make money. I knew how to clean a house. I started doing it for one widowed lady across the road. And ended up doing it for six different clients.

Eventually I found myself helping with showers and baths, measuring out and administering meds, driving to doctor's appointments. I realized that I was something like a daughter for hire. At least, that was how I thought of it at the time.

In November of 2007 I and my family returned to Arizona. I didn't want to leave Oregon; I still miss it a lot. But the Big Recession was already making itself felt in some places, and Oregon was one of them. And my grandma needed me. Grandpa had Alzheimer's, it had gotten to the point where she couldn't deal with it by herself. And out of all our family, only I was able and willing to step up. I bet a a lot of you know exactly what I'm talking about.

My dad's older brother, my Uncle Joe, having explained that he and Aunt Sally really couldn't help much, decided to weigh in on my volunteering. Nope, this wouldn't do. I'm sure Desi (that's my nickname, my real name is Desiree) means well. But we need someone with credentials.

M'kay. I took the caregivers test-out option offered by Northland Hospice in Flagstaff. Aced that sucker in about two hours. Got myself certified in the State of Arizona for Personal, Directed, and Supervisory care levels. How's that, Uncle Joe? Am I credentialed enough for you? (Yes, I was. He shut up.)​

I still wasn't working for an agency, but the caregivers sent by the hospice outfit Grandma signed up for were happy to have my help. (my presence made it easier for them to take much-needed breaks.) And because I wasn't an employee, I was able to do some things they couldn't. Like give Grandpa his morphine drops on a night when he was clearly in great pain, but the nurse whose permission was required to give him the meds wasn't answering her phone. After several tries the hospice caregiver was nearly in tears. She knew my grandpa needed the meds. But without the okay from the actual nurse, she'd risk losing her job (or worse) if she went ahead and did it anyway. I couldn't even believe it.

So I literally said f*ck this, I'll do it. It's not like they can fire me. My grandpa was hurting, and that was all I cared about. I gave him the morphine drops. Measured it precisely, administered it correctly. Within moments his writhing and moaning stopped. And then the nurse called back because of course.

A couple weeks later Grandpa died. And I thought I'd take those nice new certificates out to go job hunting. What an adventure that was. The first thing I learned was that the few actual hospice agencies in the area at the time only wanted people with verifiable experience. A chat with my grandma would not suffice. Which was understandable. So, I made the rounds of the home health agencies.

I discovered that the various home health aide, home care, senior care, and similar agencies can vary as far as services offered and prices charged. Most require employees to do personal care (bathing, dressing, toileting, meds), housecleaning, pet care and cleanup, laundry, cooking, pretty much everything I had done for those people back in Oregon. They charged by the hour, two hours minimum, and every single minute had to be accounted for in writing. I learned that if the client was your own family member, you'd be paid less by about $2 an hour. (The client however was charged the same.) When I asked why I was told that obviously working for your own loved one was easier. Yes, they really said that. With a straight face even. Easier.

I learned that every agency wanted people who could come out at a moment's notice, and were willing to stay overnight. Which again was paid less. Why's that, you ask? Because- get this- They are paying you to sleep.

I can almost hear the howls of disbelieving laughter. Remembering it I want to laugh myself. I wonder how many of the people running those agencies have actually done any caregiving.

Also, no agency I spoke with would accept a client who didn't have a DNR*. Which had to be displayed in a visible place (often on the fridge.) A copy had to be placed in the agency's client file. However, no employee could be without a CPR certification, which had to be renewed annually. I actually agree with this one, I think everyone should know CPR. Also, client's express wishes and signed DNR notwithstanding, if a client stopped breathing or went into cardiac arrest on your watch, you're absolutely required to 1) call 911, and 2) begin CPR. I never really learned what the consequences would be for an employee who failed to do CPR on a client. But it was implied that an eternity of being tormented by demons masquerading as attorneys would be a strong possibility. I don't know if such policies are a thing in other states. But in Arizona... unless something has changed, yes. If you as a client have the required DNR, apparently you can expect the home health aide agency to act as if you don't.

Which still makes no sense at all to me.

I eventually went freelance, hiring myself out as a fill-in for times when agencies had a gap in staffing to fill. It meant that I didn't have to take overnight shifts just to keep my job.

After about a year of that, Grandma could no longer live alone. I became her live-in caregiver. What a learning experience that was.

I discovered that in the beginning, other family members will thank you effusively for letting them off the hook volunteering. That they'll swear they are just a phone call away, and be sure to call them if you need anything. That for the first year or two at least, they'll actually take Grandma for a week so you can have a vacation. (I hear you laughing. Vacation? Seriously? I'm spending that week cleaning up the accumulated grunge.) And that eventually they quit doing that. They stop calling, they stop asking how you're doing. When they do drop by for an hour or so to visit, they notice every single dusty shelf. Every dirty dish. Every spot on the carpet. You will definitely get an earful about that just as they're leaving.

I discovered that some doctor's offices routinely overbook patients in a way that airlines can only envy. That sitting in a waiting room for two, three, four hours not only didn't get you an apology, it got you actual hostility if you so much as hinted that maybe, just possibly, you might have other places you needed to be. I learned that family caregivers can expect an occasional pat on the back for being willing to do it, and a heaping steaming sh!tpile of guilt if you say that, no, I'm sorry, I can't do (fill in whatever backbreaking, expensive, time consuming and utterly ridiculous demand is being made by the doctor). And that doctors can get really cranky if you decline to drive your Grandma on a hundred mile trip for a test that is available right here in your own town.

I learned that the American healthcare system would quite possibly f*cking collapse without the unpaid labor of the literal millions of us who take on a crapton of the work of keeping elderly and disabled people alive. They- the entire medical industry- depend upon the legions of family members and friends who volunteer for what has to be some of the hardest work imaginable. As well as often the most flat-out thankless.

All across this country are doctor's offices with little brochure racks in the waiting rooms. For when you're tired of looking at the same People magazine from eight years ago. And Golf Digest really isn't your thing, even if it is only two years old.

Little brochure racks, filled with pretty brochures with colorful, soft-focus photographs of smiling, cheerful people (usually middle aged women, that part at least is pretty accurate) handing bouquets of daisies to sweetly smiling elders who are nicely turned out in immaculate cashmere cardigans, lap robes, and soft fuzzy slippers. With titles like "Your Caregiving Journey". Full of helpful tips like, Cook a week's worth of meals at once, freeze them and use as needed! Or, Make laundry easier by keeping a good stain remover handy! Or my personal favorite... Take a nap while your loved one is taking theirs! Reminds me of when my kids were newborns. And new moms were advised to sleep when your baby is sleeping.

At some point, someone, possibly well-meaning but definitely clueless, will remark about how it's not that different from caring for a baby, right? How hard could it be? Yeah, um, no. There's certainly a lot of poop, pee, vomit, and spilled food involved. A certain amount of blood can be expected. 2 AM wake-up calls and dirty diapers, you bet. But apart from that, it's nothing like caring for a baby. Not even close.

If I let myself get started on all the times I heard "Oh, bless you! You'll certainly be rewarded in heaven!" or some variation of it, I'll probably scream. So I won't.

My "caregiving journey" with Grandma ended with her death about ten years later. But the caregiving continued for two more years, with my mom and later my dad. After he died some of Dad's friends remarked on how good I am at this sort of thing, and would I now get a paying job doing it? No. I won't. I loved those people; I have few regrets. I'm very good at it. And I never want to do it again.

However much you might be determined not to, chances are you end up putting your own life on the back burner for weeks, months, years. Years. It's almost inevitable. And it's exhausting.

And then they die. And you're there for them then, too. My grandparents each went fairly peacefully, and let me know how much they loved me before they went. My parents, not so much.

Thank you for reading. This is an open thread, all topics are welcome. Former, current, and future caregivers please feel free to share your thoughts and experiences.

*DNR = Do Not Resuscitate.

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