...or a PSA on how I take care of my dad during the COVID-19 pandemic
On 26 February, my precious dad came down with a cold that didn't seem like much at first.
He usually gets over colds in 3 days--the rat bastard. ;)
This time was different.
Spoiler: NO, it was NOT COVID-19.
It was just an ordinary cold that, in an 88-year-old man with a history of weakness from Parkinson's disease, turned into nasty bronchitis that brought us to the local ER*.
(Unfortunately, our local ER needed us to make two such visits: they sent us home with a clean bill of health after the first visit and only admitted him after he was literally too sick to get out of bed because he was having trouble breathing. The ER nurse who took care of us both times was pissed on our behalf. It was a case of the doctors having their heads up their asses and the nurses being the superstars who really help the patients get better. But I digress.)
From the ER that day nearly a month ago, my dad was admitted to the ICU**, where he stayed for a good 2 weeks, receiving excellent care from the nurses (and still a fair amount of stupidity from the doctors...but I digress).
From the ICU, they stepped down my dad's care to the PCU*** (note: stepping down care is usually a good thing).
While he was in that ICU-PCU transition, the bronchitis resolved with the antibiotics, but the weakness brought on multi-lobe aspiration pneumonia...meaning that my dad was no longer infectious but that he was sicker than ever.
From the PCU, the hospital discharged my dad to hospice care****.
My dad had the choice of going to a very nice, new local facility for hospice care or receiving hospice care at home.
He chose hospice care at home--and I readily agreed because who wants to put their loved one into a facility where they could be exposed to COVID-19?--so home he came on Friday.
The hospice people and the hospital bragged that Medicare "covers everything" if you go the hospice-at-home route.
Now that we've experienced a few days of hospice care at home, I now know what they mean when they say Medicare "covers everything."
Here's the translation: "everything" = "precious little."
Let me explain.
In a facility, your care is delivered by nurses, who administer the medicine, and by certified nursing aides (CNAs), who do all the personal care throughout the day: showers if you can, sponge baths in bed if you can't, changing your adult diapers if you use them, emptying and cleaning your bedside commode if you use one, cleaning your teeth if you can't do it yourself, and changing your bed sheets while you're still in bed if you can't get out of bed with less than two trained people's help. (Typical rehab facilities may either have a doctor who comes in regularly or a doctor on call whom they can page; hospice at home has doctors they can similarly consult.)
So, in the hospice-at-home setting, you can expect to see a nurse a couple times per week and a CNA a couple times per week.
We have had a private CNA helping my dad for 2 hrs/day for the past year. She charges $25/hr, or $50/day, or $250/week (or $300/week if she helps us out every day but Saturday).
For hospice at home, Medicare covers (drumroll, please) 3 hrs/week maximum for a CNA.
In other words, for your loved one's personal care, Medicare covers a whopping $75/week tops.
In other words, if you're "lucky" (read: sick) enough to qualify, you will get a CNA for one hour every other day.
And you will only get that precious, precious CNA on Monday through Friday during 9-5 regular business hours.
Nights?
Weekends?
You're on your own, bub!
This means that, if you--as your loved one's caregiver
--aren't trained, willing, or able to change adult underwear, do bed baths, or change sheets while your loved one is still in bed, your loved one could be left sitting in his or her own waste for nearly 48 hours.
In short, Medicare loves home hospice care because they are getting all YOUR labor for FREE.
I'll say it again: under Medicare, for hospice at home, YOU ARE THE CNA.
The hospice providers can really only do very little.
They can arrange rental of a hospital bed with rails to keep your loved one safe from falling out of bed and with mattresses that plump up with air to help keep your loved one from getting painful and potentially life-threatening pressure sores.
The hospice nurse can show you how to operate medical equipment--like nebulizers--provided that your hospice case manager orders it for you. (Admitted on a weekend? It may take
days for your equipment to be ordered, let alone to show up.)
The hospice CNA can come by for 1 precious hour every other weekday during 9-5 business hours--given whomever else is already on his/her busy schedule--to help keep your loved one clean and comfortable.
The hospice case manager can arrange for an interdenominational pastor to provide spiritual support (which doesn't work for Catholics like my dad, who insist on having their own priests provide pastoral support).
Hospice at home can provide a few other sundry services--for example, they provide cheap-ass adult diapers and bed pads, and they provide itty bitty baby wipes that are too small for adult bottoms--but these are the biggies. As it was, a friend of mine ran out and brought us much nicer adult diapers and butt wipes (as I affectionately call them), and I've been using our own disposable bed pads because the supplies from hospice are so inferior.
Hospice does not provide special food for your loved one, like thickened liquids or even thickener for the beverages you have on hand. They will simply tell you, "Put cornstarch in it" without telling you how or how much. What they don't tell you is DON'T just dump raw cornstarch into, say, iced tea and expect it to taste nice or thicken appropriately. You will have to cook it on high heat until it thickens appropriately and the raw flavor cooks out. Lest I misinform you, try Dr. Google for amounts and recipes for homemade thickened beverages. And you'd better have a blender and broth on hand to puree regular foods for your loved one who can't swallow normally.
Hospice cannot help with CNA care after hours. They cannot help--or, as they promise, facilitate
--applications for Medicaid.
If you arrange for hospice at home, expect "NO" for an answer
most of the time.
What they can do is very minimal, and you will need to ask questions that demand quantifiable answers if you want half a clue regarding what you're signing up for.
And woe to you if you or your loved one is discharged to hospice on a Friday, like my dad was--you'll find yourself flying blind and walking a tightrope without a net. It's a brutal adjustment for you as a caregiver.
If you've had hospital ward experience as an adult, you can indeed manage this if you're not already working a job--it's an honor and privilege to take care of a loved one, and it is extremely satisfying and rewarding, but it is also
exhausting.
If, however, you've had the misfortune to start hospice during the COVID-19 pandemic, you will find things to be even more haywire.
Your hospice social worker or case manager may refuse to come to the house, or they may not be able to because they may be sick themselves. This slows down deliveries of services and medical equipment and supplies.
The hospice nurses, some of whom do work on the weekends, may end up picking up the slack--which, frankly, isn't fair to them.
You will have immense difficulty getting supplies like sanitizing wipes, disinfectant spray, masks, and everything else that crazy Americans have hoarded that medical professionals use to keep themselves and their patients safe.
You will encounter delays in getting ordinary supplies that crazy Americans aren't hoarding delivered to your home.
You will hear "NO" in response to your reasonable requests on your loved one's behalf more frequently than you otherwise might.
In other words, COVID-19 is NOT helping the home hospice situation, and Americans' panic is harming real people who deserve better.
So, dear ones, that is my public service announcement, or PSA, on why Medicare lurves hospice care at home and how COVID-19 isn't making things easier.
The good news is that my dad is doing a lot better now that he's home.
His breathing--although far from perfect--is a lot better. He is coughing a whole lot less. He is able to swallow thin liquids, like his beloved coffee, most of the time without aspirating it. Even though he is eating precious little--a few tablespoons of food daily--he is still Himself, and he still has his sense of humor and his ambitions...such as getting into his old, familiar wheelchair and using his own bathroom.
Thanks to the hospice crisis care nurses--whom the hospice's admitting nurse assigned to us the Friday my dad was admitted because he was in such poor shape--my dad spent this afternoon in the wheelchair and used his own bathroom, albeit with a lot of help.
His long term prognosis is still an unknown, but it was immensely satisfying to see him have such a great day today.
And if you want to make truly gourmet thickened coffee, here are two options that have worked a treat for my dad and me:
1. Hit up your favorite online Cuban store (mine is in Miami) and buy some Spanish-style hot chocolate mix. Cook as directed, adding one packet/serving of your favorite instant espresso crystals per cup of dairy or non-dairy milk. This is beyond yummy!
2. If your hospital transport service gives you thickened milk from your loved one's hospital room, microwave it with a teaspoon or two of sugar (to taste) and one packet/serving of your favorite instant espresso crystals. This is a great way not to waste something your loved one may not find appetizing on its own, and it makes a very nice, rich café au lait.
That's it from here for now.
In the long term, please plan ahead and consider getting long term health care insurance so that you don't find yourself relying on already-stressed-out family members to apply to Medicaid for you at the last minute.
In the short term, stay safe and STAY HOME if you can...keep your hands clean and DON'T touch your face...and for the love of Pete, DON'T HOARD personal protective equipment, toilet paper, or anything else that everyone else needs right now.
Remember, we're all in this together. And if we keep our heads, we will all get through this together.
---
*ER = emergency room
**ICU = intensive care unit
***PCU = progressive care unit
***Hospice care = palliative, or comfort care, expected to last 6 months or less because the patient is considered to be approaching end of life
