This is my seventh essay on caregiving, first published on another website on February 1, 2013.
After my mother died last September, I wrote what I thought would be my final essay in this series, discussing palliative care and hospice. I remember thinking at the time that there were one or two things that I wished I had covered in the earlier essays, but I dismissed them as not important enough to worry about. At a time like that, not much else would seem important. But it keeps coming back to me that these remaining pieces of information would have been very useful to me at one time, and it was no fun having to learn them the hard way. Having thus reconsidered, this will be the first of what I believe will be my last two remaining essays.
We have all seen those reports on the news or on some show like 60 Minutes that reveal how horrible conditions can be in nursing homes, with patients being neglected or physically abused. Fortunately, in my experience with nursing homes, I never saw any problems like that. The situation reminds me of my father’s experience after World War II. My father was in the navy, and in the early months of the war, his ship went down. He spent the next three-and-a-half years in a Japanese prisoner-of-war camp, where disease and starvation resulted in the death of all but just over a hundred men out of a crew of over a thousand (about half died when the ship went down). When he got back home, he had to listen to his family talk about how rough they had it during the war, what with Meatless Mondays and sugar rationing. So, with apologies to anyone who has ever had real problems with nursing homes, I will now venture to discuss a relatively minor problem that I encountered.
When it became clear that my mother would have to go into a nursing home permanently, I had already had some experience with such facilities, and so I picked the nicest one of the bunch. It had only one disadvantage: it did not accept Medicaid. Except for the patients that were there for only a few weeks of therapy, which Medicare paid for, everyone else was private-pay. My mother was not rich, but she had enough money and income to pay privately for about eighteen months. So, I decided to start at this private-pay facility, and use it as a base of operations, as it were, from which I could take my time investigating Medicaid facilities in the area. Then, when she finally ran out of money, I would know where to transfer her.
I would have preferred to have her in a private room, but that would have cost about $7,800 per month, as opposed to just $6,500 for a semi-private room (plus about $500 worth of extras). Since the latter would allow me to stretch her money further, thereby keeping her at the private-pay nursing home as long as possible, I went with that option. And this leads me to the problem that gave me the most stress, the one that used to keep me up at night: the problem of noise. Imagine being in your living room, with a curtain down the middle. On one side of the curtain, your half of the room, you are watching television. On the other side of the curtain is your roommate, watching another television, but tuned to a different station. Since the sound coming from each television interferes with the other, there is a tendency to escalate, each set being turned up a little louder in order drown out the other. And when you turn your set off, deciding to go to sleep, the other set remains on. That is what it is like to be in a semi-private room.
In the hospital, it had been different. There she had a remote that allowed her to do everything: adjust the bed, call for assistance, control the television. More importantly, the remote had the television speaker in it. So she could turn the volume up loud enough for her to hear it, but without disturbing her roommate, and vice versa. But not a single one of the nursing homes that I toured had that set up. In every case, there were just two ordinary televisions, with regular speakers. I suppose that the primary reason nursing homes do not have that kind of setup is that most nursing homes, to keep costs low, do not supply televisions. You have to bring one in yourself. Headphones naturally suggest themselves as a solution, but they would have to be wireless, or else people would be tripping over the wire; and wireless headphones are a little too complicated for people in nursing homes. By “complicated,” I mean, among other things, you have to turn them off to make sure the battery does not run down. In any event, I never saw anyone in any of the nursing homes using them.
When I would go to visit my mother, she would tearfully plead with me to get her out of there. She said that her roommate’s television was driving her mad, because it was on all night long. Since my mother was suffering from dementia, I could never be sure of anything she told me. At lunch, however, she used to sit at the same table as her roommate, who casually mentioned one day that she never got more than four hours of sleep at night, which meant that the television was probably on twenty hours per day. After one long, miserable month, I moved my mother into a private room, which meant that her money would only last her about a year. When she did run out of money, she would have to have a roommate, because Medicaid will not pay for a private room. But at least this would postpone my mother’s nightmare a little longer.
In a way, it could have been worse. At least my mother’s roommate did not have any hearing problems. Being old, a lot of residents in nursing homes cannot hear, and the television is so loud that it is earsplitting. I walked by one room where the television volume was up full blast. Inside was a man, wearing a hearing aid, sitting right next to the TV in his wheelchair, and leaning slightly forward, presumably so he could hear better. Being in that room would be like being in Guantanamo, subjected to what some are pleased to call harsh interrogation techniques, but which I call torture. I half expected to see a couple of CIA agents in there, demanding that the man’s roommate tell them where the weapons of mass destruction were. In another room, with a television playing equally loud, the resident would often leave and wander down the hall, without bothering to turn the set off, while his roommate, who was confined to his bed, had to just lie there.
The second major source of noise was raving. Some of the residents would cry out for help, and then scream to be left alone when the caregiver went in to see what they needed. Others would beg forgiveness from God, sorry for whatever sin they had committed. Others still would cry for their mothers. Unlike the problem with the televisions, raving only occurred occasionally. But when it did occur, it was unnerving.
And so, I said a little prayer to the politicians of Texas, to please have mercy on my poor mother and those like her, to change the Medicaid rules, and allow everyone to have a private room, for just a little peace and quiet at the end of their lives. But I fear I prayed to a heartless pantheon, who are more likely to cut Medicaid than supply it with more funding, which will only make things worse. As a harbinger of a grim future, one of the nursing homes I checked into had four patients to a room. I did not even bother to tour that facility, and I shudder to think what four televisions must sound like. As our politicians wax virtuous about the need to cut the entitlements, of which Medicaid is one, I fear that a Merciless Providence will eventually ordain a return to the wards: large rooms with twenty beds each, and a couple of minimum-wage caregivers running back and forth, trying to attend to the patients who occupy them. Of course, each bed will have its own television.
Through a circuitous process that I covered in my fourth essay, my mother eventually ended up in a semi-private room with a roommate who slept all day. As a result, she never played her television, and, equally important, my mother’s television did not seem to disturb her roommate. After all, my mother was not completely innocent in all this, for she liked to watch television too, and being hard of hearing, she tended to play it a bit loud herself. So I had to worry about the noise problem both ways.
At any rate, the problem being temporarily solved, I began investigating the Medicaid facilities, for which purpose I found the website Medicare.gov extremely useful. By typing in my zip code, it would tell me which nursing homes accepted Medicaid and which did not, and how many certified beds they had. Unfortunately, no distinction is made on the website between beds that are certified for both Medicare and Medicaid, and those that are Medicare certified only. That information needs to be obtained with a phone call.
Although a nursing home with a small number of beds may sound cozy, suggesting that the staff will find it easier to care for an equally small number of patients, I realized that there was a distinct disadvantage in selecting such a nursing home. If my mother ended up with a noisy roommate, the option of moving her to another room would be limited. When I checked out a nursing home that had three hundred beds, however, the woman in charge of admissions mentioned, without my even having to ask, that they would work hard to find my mother a compatible roommate should that be necessary.
There is another reason why big is good. When I said that my mother had enough money to pay privately for about eighteen months, that did not mean I could keep her at the private-pay nursing home for the full period. Most nursing homes have waiting lists, so I knew that I would have to put in an application to a Medicaid facility at least six months before she ran out of money, and even that might be pushing it. I finally decided on nine months, just in case. In any event, the larger the nursing home, the greater the turnover, resulting in a shorter waiting list. If the number of certified Medicaid beds is small, however, getting one of those beds may not be possible. One place I called, which only had six beds, told me not to even bother getting on the waiting list, for it might be years before one was available.
So, I went with the big nursing home when the time came for me to transfer my mother, and the good news is that the roommate my mother ended up with had good hearing, and thus played her television low. And as my mother had reached the point where she no longer watched television, because she no longer understood what was going on, I did not have to worry about the noise problem on her end.
Running parallel to my effort to protect my mother from noise were problems concerning money: her money, my money, and the government’s money. But that is for another essay, which I expect to publish soon.