Medicare lurves hospice at home--a Happy Father's Day update

Greetings, dear ones!

I hope you and yours are doing well this Father's Day. I am pleased to report that my dad and I are both doing well, albeit both in desperate need of haircuts.

It's been quite a journey to get from my last update to today's update, so I'm going to dive right in.

So, to start this installment of how much Medicare luuuuurves hospice at home, let's review:

Medicare pays for adult diapers and disposable bed pads but not butt cream or butt wipes--so they apparently expect you to put clean diapers on dirty butts, and they apparently think diaper rash is kewl. And you'd do well to maintain your own stock of adult diapers and disposable bed pads in case the hospice people have any delays in placing the orders or the orders get delayed because pandemic.

Medicare covers no more than 3 hours per week of a nursing aide to come in and bed-bathe your loved one
--meaning, if you're lucky and your loved one is sick enough, they'll come in Monday, Wednesday, and Friday to clean your loved one. The rest of the time, it's up to you.

So, again, YOU are paying for and providing the facility, utilities, cooking, laundry, feeding, and personal care the rest of the time.

If you have an urgent health concern for your loved one and you need to call hospice first, as they instruct, it may be hours before one of their nurses come out to see you. And if your loved one is in the hospital for 24 hours, hospice will discharge you, so you'll have to re-sign all of the intake paperwork again (not onerous but something to be aware of). So, depending on how urgent urgent is, you may just want to call 911 and tell the hospice people about it all later.

As I've said before, Medicare really only covers a limited (translation: minuscule) amount of comfort care for your loved one--unless you want to dope him or her up with morphine (please don't!). If you're concerned for your loved one's overall health and safety, Medicare literally cannot care less.

Example du jour: bed alarms.

My dad--bless him!--got to feeling so well after about two months of hospice care at home that he forgot he couldn't walk just yet. So he kept trying to get out of bed by himself--a total no-no unless someone else was around. So I caught him and stopped him a couple or three times...and I found him on the floor a couple or three times.

Fortunately, he always climbs out--never falls--so he never gets injured. Thank Atheist God for small (or huge!) favors!

But still...!

He was trying to escape--as I call it to be funny (he wasn't)--at all hours of the day and night (remember: I work full time, and it's just me here, especially during the pandemic except for the private CNA who'd come in two hours per day).

My dad isn't exactly big, but he weighs more than I do, and he'd been pretty much dead weight when I tried to lift him. And between his nighttime coughing and my increasing worry about finding him on the floor in the morning, I was starting to lose sleep in a serious way. (And did I mention that I work full time? Because I work full time. And I was taking care of my dad all day while I was working and right up until about an hour before I'd go to bed every night.)

So for my own sanity and his safety, I called up the hospice people and asked about getting him a bed clip, as my cousin--who took care of both of her parents single-handedly--suggested.

Hospice had never heard of no bed clip, so I asked about the kind of bed alarms that hospitals use.

Oh no--Medicare doesn't cover those!

Based on their reaction, you'd have thought I was blithely demanding a diamond studded platinum bedpan.

Honestly--what does Medicare expect people to do????? I would really love to know!

So I went online and ordered a bed alarm with a battery AND an AC adapter for ~$65 including shipping (you know the adapter is extra).

And I hooked it up and breathed a sigh of relief until I ended up having to run into his room several times over the next however many weeks (honestly--it's all a blur at this point) to stop him from climbing out of bed at all hours of the day and night.

And I started fussing at him about how he NEEDS to let me SLEEP because if I don't sleep, I can't work--I can't ethically charge my company to pay me when I'm less effective on the job than a box of rocks. And if I get fired, then I lose the house, and then we're both out on the street living in a cardboard box, so then where would he be? For sheer self-preservation, it was in my dad's best interests to let me sleep.

And I started honest-to-goodness nagging him, which is totally not my nature, "What are you NOT going to do tonight? You're NOT going to wake me up? That's RIGHT!"

But the Parkinson's and Charcot Marie Tooth issues my dad is dealing with screw up his sleep/wake enough that he doesn't always know he's not fully awake--he thinks he's awake, but he's disoriented. And you have to talk with him for a few minutes for him to wake all the way up and reorient himself. And then he's fine--just like he's been my whole life.

So, one fine Tuesday night, he started hollering for me at 3:30 in the morning. There was literally nothing I could do for him, so I went in and (again, totally not my nature, but I was trying to make an impression) yelled at him that there was nothing I could do for him, he was literally killing me (well, that was true), and I couldn't work full time and take care of him full time and stay with him all night and not sleep because I can't charge my work for work I cannot do and then I will lose my job and the house and then we're both out on the street without a dime because I cashed out my retirement to build his suite, so I have no such savings. "I love you, but I can't keep you company all night because you're lonely--I HAVE to SLEEP to survive so I can take care of you, so GO TO SLEEP!!!"

By this time, I had already lost like 6% of my total body weight because I was either working or taking care of him instead of getting something myself to eat. I COULD NOT both not eat and not sleep. He was literally running me into the ground, and it was a race between which of us would land in the hospital first.

That Wednesday, I had reached the end of my rope, which I'd already tied so many knots into so I could hang on that there was nothing left: I had to sleep. Even though by then I wasn't sleeping well from the noise and the worry, I had to give myself a fighting chance.

So I camped out and teleworked from his suite and kept him awake all day, hoping he'd be so exhausted that he'd sleep like a baby that night.

I even recorded myself yelling into my cell phone: "Hey! You!! WAKE UP!!!" so I could play it to him if he started dozing off. Eventually, that turned into a running gag that made us both giggle.

And that night, like a Very Bad Kid, I unplugged the bed alarm and told myself, "He will be fine."

Around 2:30 that night, I heard a thoomp. Was I dreaming? Hallucinating? Was it something falling over in one of my many Fibber McGee closets? Was it something falling onto the roof (which happens all the time)? Was it something falling off my dad's bedside table (which was also happening all the time)? Or...was it Himself landing on the floor?

So I listened...and listened...nothing. So I tried to go back to sleep.

8:30 that Thursday morning, when I went in to take care of him...there he was, on the floor, where he'd been since 2:30 that night.

Fuck.

Don't worry, friends--he was lucid. He was uninjured, but I didn't know it yet.

He thought that, after not having walked for three months, he'd just waltz over to the coffee machine and make himself a cuppa coffee at 2:30 in the morning.

I did not have a good feeling about trying to lift him. I was too depleted to try, and I wasn't sure he was actually ok after so long on the floor. So I called my sister to confer: should I call EMS? She said YES--the hospital will HAVE to place him into a nursing home after they're sure he's stable.

And that, dear ones, is exactly what happened.

Oh, sure, I had to scream hysterically (again--totally not my personality) at the hospital staff that my dad couldn't come home...the hospice had come and taken the hospital bed back (because I told them to), so there was no bed for him...I wouldn't be there...whatever...anything/everything I could think of. My aunt had warned me about this--the hospital will try to bully/browbeat you into taking your loved one back, even when it's no longer safe for him/her or you to take care of them at home. So you HAVE to stick to your guns. And a little well-placed shouting and hysteria can go a long way in getting those bullies to back off (thanks, Auntie!).

My dad is in the only more-or-less local rehab/nursing facility (an hour away from my house) that would take him during the pandemic, and they are taking such good care of him that I've arranged for a famous local bakery to deliver 3 dozen cake pops and 1 dozen cookies to the staff tomorrow.

He's been there a month and, like I said, is doing great except for, like me, needing a haircut.

The plan is to use Medicare to get him back on his feet so he can stroll around using his rollator and so he can get in/out of his wheelchair by himself. Once he's strong enough to do that, I keep telling him (I call him every day), I can check him out of the facility for a weekend here and there so we can go take our family road trips, go see movies, and hit up our favorite local restaurants again.

While Medicare gives him all the rehab he can benefit from (i.e., until he plateaus), we're golden. Then, we cash out his cash-value life insurance and pay for private care (buckle up, friends--it costs ~$10k/month). Then my sister and I will (re)apply for Medicaid but in this new state (like I said, he's an hour away from the house). Then he will be all set for all the long-term care he needs.

It's been sad/challenging in that this is the longest we've been apart since I moved him in because pandemic (thanks, trump, you POS), but it's been the Biggest Comfort in the World to know that he's being so well taken care of. And my house is finally...quiet. No longer am I running his washer/dryer 1+ times daily. No more 24/7 TV from his suite. I'm finally getting my weight back up and stable. I am slowly regaining enough mental function to work. And I'm slowly relearning to sleep--even though I still hear a crap-ton of weird noises 24/7 that I used to think were coming from his suite but that I now know cannot be. Hm!

So although Medicare fucking sucks when it comes to hospice, and although you have to buy and do so much yourself that you'll wonder what exactly Medicare is good for when it comes to hospice, our story has a happy ending because my precious Cupcake of a dad now has his very own round-the-clock staff who appreciate him as much as I do and who are taking the Very Best Care they can of him under the circumstances.

If anyone deserves his own 24/7 staff, it's my dad.  :)

Happy Father's Day!

- Dot Calm's shadow