Fellow American, do you find yourself recently quadriplegic, demented, or just old and alone? Do you find yourself wondering, Whatever shall I do?

What you need, my friend, is a caregiver! And I will tell you how to get one. First, here are some things you will need: 1) Piles and piles of money; 2) Even more money; 3) Just absurd amounts of money.

Quality caregivers don’t come cheap! When I was a rookie disabled person just out of the academy, I was paying $440 a month for two hours of service, two days a week, for a semiskilled caregiver. Fortunately I am a 1-percenter, and that is like, less than what I spend on a single nose blow, so when I needed more hours, no big whup. If your piles of money are tied up in real estate or other investments, instead of coming out your ass like we 1-percenters, you will want to liquidate those pretty soon. I may have mentioned this already: Caregivers don’t come cheap!

What’s that, you say? You are solid middle class with meager to no savings? How could you have been so shortsighted as to not have prepared for that debilitating lightning strike last year? Not to mention lazy! Fortunately for you, there is another option – impoverish yourself so you can get on Medicaid, then get ready for the thrill-a-minute ride that is government subsidized care. Here is my story.

(Full disclosure: I am not really a 1-percenter. I had to go the Medicaid route.)

I’ve written about my first caregiver, Yasmin, elsewhere. She was great, but when I got on Medicaid she had to go. The reason is that Medicaid is an all or nothing deal – you either pay everything with it, or you pay everything yourself. No going halvsies with Uncle Sam. If you have the audacity to go on the dole, he wants you to really be on the dole. He’s kind of a power tripper like that. More on that later.

Anyway, Yasmin’s agency did not accept Medicaid, so my Medicaid caseworker found me an agency that did, and they sent me a caregiver named Julia. She was great, just as good as Yasmin. She arrived on time, didn’t come in with a lot of chit-chat, did everything the way I asked her to without any “Well I usually do it like”, was great at keeping the house clean, looked for things to do to keep busy, worked quietly, and she was a great cook. She was also pregnant – the agency was not allowed to disclose that to me, of course – so she was out after a couple of weeks to have her baby.

The agency replaced her with Christina, who if anything was even better than Julia, even though she was just 22 and had no experience. It was like she was made for this work. We were off to a great start. Then my wife and I started getting angry emails and phone calls from the manager of the agency, Amanda. Christina did this, Christina did that, she’s not supposed to do whatever, under no circumstances is she allowed to yada-yada. We were like, That sounds like your problem, yo. Annoying. Almost like this manager had no real management or even customer service experience. (Surprise – she didn’t. More on managers later.)

Christina had a two-year-old and started missing work, always calling in at the last minute. Scratch that, I wouldn’t know anything about it until the morning of, when there would be a stranger at the foot of my bed saying, Hi I’m Martha. What I can do for you? Then I would have to walk this new person through my morning routine.

Martha was a sweet old gal, but lacked the skill set to take care of a guy like me. Her clients were old ladies who needed someone to watch Jimmy Stewart movies with and keep their figurine collections dust-free. She was perfectly suited to that, being nearly that age herself. I would have to walk her through my routine again and again. She couldn’t quite keep things straight.

One morning after breakfast we went to the bathroom to brush my teeth. I have an electric toothbrush, so I gave her a little tutorial on how to use that. When she stuck it in my mouth I started choking on the most acrid, nasty goo you can imagine. It wasn’t toothpaste. I was gagging and trying to yell, Get this shit out of my mouth, but the toothbrush was still in there, so it came out like, Ngyegleshenaoyaoyaofh! She was all flustered and didn’t know what to do, just kept wiggling the toothbrush around in my mouth until I managed to get my head clear of it and yell, Moufwafh! at which point she grabbed a glass I had used to spit mouthwash into the previous evening and poured its minty, viscous contents into my craw.

That was gross, but I didn’t care. I just wanted to be rid of whatever chemical crud she had put into my mouth. The chemical crud turned out to be cortisone cream. I had been using it for jock itch, one of the hidden perks of sitting in a wheelchair all the time. It was an understandable mistake on her part. The tube looks a lot like a tube of toothpaste, apart from the giant letters that spell out CORTISONE CREAM.

Martha was really sorry, I mean, she felt really bad. I felt really bad too, but not in the same way as she did.

Later, after lunch I said to her, Martha could you go get my floss thing from the bathroom? It looks like a toothbrush but it has a little floss thing on the end of it. Oh sure, yes, I will, she said, and was back in a flash (a really slow, geriatric flash) with the correct implement. Impressive.

Lacking the ability to use it myself, I told her to just hold it out towards my mouth and I would lean in and do the work myself. She held it out parallel to my face. Um, no not like that, I said. Point it at me like you’re going to stab me with it, you know? She turned it 180°, parallel the other way. No, more like… I needed to show her, but it is really, really hard to demonstrate things without being able to gesture. I tried to find some simple words to make this incredibly fucking simple operation comprehensible to her.

OK, I said, Pretend you’re going to use it on yourself. She turned it around and pointed it at her open mouth, no problemo. Great! I exclaimed, Now point it at me the same way. She held it out parallel to my face again, and I lost it. I yelled. I howled. I banged my head on the table. I bellowed some more. She felt bad, like super bad. She was really trying to help me, she said. With my head still on the table I said, Go away please. Just go somewhere and stay there until I call you. She said, Yes okay, I will go. She went, I stayed and seethed.

After about 15 minutes I turned back into a gentle human again and called her back. Martha, I calmly said, We are going to do this. Yes Mr. Mark, she replied, and somehow or other we finally got through flossing my teeth.

It wasn’t her fault. It was all on the agency for sending the wrong person. Christina had been out many times and they always sent Martha. She had proven herself a liability, so I called up the agency to let them have it. Amanda listened, did not apologize, but told me she didn’t have anybody else. Martha was the only one available to fill in for Christina, who by the way was really not a good employee, and wouldn’t I like to go back to Julia now that she is done with her maternity leave?

But no, Christina was really great – when she came to work – and I wanted to give her another chance. And the truth is, Julia had these annoying conversational glitches. Like we would be sitting there silently and she would abruptly say something like, Have you ever been to Six Flags? And I would say, Yeah I went to the one in Texas a long time ago, and I would wait for her follow-up question or comment, but she would just be gazing dully into midair like her brain was suddenly downloading a firmware update. That got old pretty quickly.

Also I began to feel like this agency and its employees were a very insular lot and there was some kind of group dislike for Christina, and I was being cajoled into firing her for the pleasure of this cowardly and immature cabal. Annoying. As it turned out fate intervened to do their dirty work for them.

On the day I got my BiPAP machine, I lost my temper when Christina kept putting it on me incorrectly, and I yelled at her. She got really quiet and shaky and stayed that way the rest of her shift. Before she left I said, Hey you know, this is just stressful for me, having to start using this breathing apparatus, OK? I’m sorry I blew up. She replied, I don’t like to be treated like that, and that was it.

Later Amanda called to bitch me out. She told me to control my temper. I reminded her that I had a terminal disease, and that tended to put me on edge most of the time. I was sorry, but as professional caregivers I also thought that both she and Christina should probably understand that and have thicker fucking skins. I also mentioned that successful business people generally don’t bitch out their customers – just sayin’. She was not moved by my little speech.

The next day Christina was a no-show. I lay in bed with a full bladder for an hour, unable to call anyone, wondering if anyone would show up, getting more and more uncomfortable and stressed out. Finally someone showed up, and it was Martha. That snapped it (although I was glad to go pee, and she did manage to get me through the morning without poisoning me).

I called Amanda to find out what the hell was going on. Christina allegedly couldn’t get a babysitter. She really wasn’t reliable, Amanda insisted. I finally agreed with her, but I also didn’t think Amanda or her agency were reliable. She told me most of her employees just did housecleaning for clients. She didn’t have anybody besides Julia that could take care of someone like me. OK, I said, Send Julia back to me please. I immediately called my caseworker, Bill to ask him find me a better agency, preferably one with a bigger and better-trained staff. He said he would get right on it. When you are on Medicaid, everything has to go through your caseworker, so hopefully you get a competent one. Bill was very competent, very responsive and proactive.

Julia was a really decent caregiver, in spite of her weird conversational skills, and I regretted telling her I would be leaving. But I really needed to be with an agency that I could depend on for the long haul, since I was losing my speech; I wouldn’t be able to train new or substitute caregivers if she had to be out with her new baby or whatever. And anyway, the only sub was Martha, and I really could not have that. She understood, but was kind of bummed out. I was too, actually. We ended up clicking towards the end.

After a few weeks Bill told me he had found an agency with a good reputation, called Synergy. I said, Rock on, let’s make the switch. He said, No problem buddy. Oh, just one thing. At the end of this week I’m going on medical leave for the next three months. While I’m gone your caseworker will be Nadia. Good luck with the new agency.

The new agency sucked worse than the last one, Nadia was incommunicado the whole time, and the next three months were hell.

Next in Disease >

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