I Wasn't Plannng on This, But Apparently, I'm Still Ranting.

Shannon's comment below about the failure of nursing homes to evacuate their patients following Hurricane Katrina and the subsequent decision to kill some of them has been a hot issue in disability circles for months. It is a tragedy on many levels, but mostly the tragedy is that there isn't much public outcry about it. "They were dying, anyway," or "They were better off" seems to be the crux of public opinion. I guess nursing home residents don't deserve an evacuation plan. Because that is what we are talking about here. Perhaps the medical staff really didn't have any choice after the fact and they really did what they thought was right. But that is not the issue so much as the issue that came screaming out about all of the overall tragedy of hurricane Katrina, Which is: Certain people don't matter and aren't worth saving. You could be poor or black or disabled or temporarily or permanently institutionalized. You don't matter and we don't care if you die. Nursing homes often do not have an adequate, or ANY plan to evacuate residents in cases of emergency. It is a requirement, but the requirement isn't enforced. Because they are just old, sick, disabled people who would be a bitch to evacuate, so why bother?

Here may be a good time to tell you about a guy named Larry McAfee, who was an engineer until he had a car accident and became a vent-dependent quadriplegic. He lived in Georgia, which is not a medicare waiver state (as is Kansas and Oregon, where D and I have lived since his accident). This means that there were no funds to keep McAfee at home, and he was thrown from nursing home to nursing home. He was even moved out of state at one point and away from his family so then he didn't even get visitors. Another time, he lived in an intensive care unit for eight months because no nursing home would take him. He became so depressed that he petitioned the court to allow him to commit physician assisted suicide. He won his petition, and the judge even applauded his unselfishness and said he wished more people like McAfee would realize their burden and step up to have themselves be killed.

This is a perfect example of a medical model vs. social model paradigm of disability. The judge, and almost everyone else, saw McAfee's depression and his desire to commit suicide as a direct result of his disability. His life had no value, he was a burden to society, and the only worthy and heroic thing he could do was to voluntarily end his life.

Fortunately for McAfee, a bunch of disability rights activists, i.e. disabled people, caught wind of the story and got together to help McAfee out. They helped him to realize that quadriplegia in and of itself was not the problem, but that society had basically sentenced him to life imprisonment without parole, or a death sentence. There were other ways to get support for his quadriplegia and have a meaningful life. They assisted him in moving to a Medicare Waiver state, got him accessible housing and home health care, and he eventually returned to work as an engineer and supposedly went on to live happily ever after, as they say.

Getting home-based supports for him was no easy task, but what if it were? It can be done, in general it is cheaper, and in some cases, if work disincentives are removed, the disabled person can work as well. Many people who have killed themselves or have been involved in physician assisted suicide have been in McAfee's position. Imprisoned. But not in their wheelchairs, but in a system that is run by special interest lobbying forces such as for-profit nursing homes and insurance companies. This is the social model of disability. That, sure, there are some medical/physical things that go along with being disabled...but they aren't that hard to deal with until you have to deal with the societal prejudices and devaluation that mounts itself on top of the mere physical stuff. Disability in and off itself is a natural part of being human. EIGHTY PERCENT (That's 80%!!! Are you listening?) of all of us will experience disability in our lifetimes. This is why disability issues matter to everyone. I guess, if you wanted to go crawl under a rock, you would not ever have to deal with a black person or a gay person. (And by rock, I mean Hayes Center, Nebraska. I lived there briefly once. Those people have managed to never meet a minority that they know of.) But no one will ever be able to avoid disability. Even if you are lucky enough to be hit by a bus and die before you ever experience disability, your mother or your grandmother will have. No one is exempt. Rather than supporting your right to be exterminated when times get tough, you could be suppproting your right to make your time (and everyone else's) more valuable and pleasant.

So, D's nursing home experience is not as dire as Larry McAfee's, but I will tell you a little bit about it, now. He's been there for almost four weeks now. He probably has a couple more weeks to go. His care has been...okay. Adequate. But not without him staying on top of every single thing that happens. There is one nurse and two to three CNA's, and there are many, many temps. The turnover is very high, so there is a matter of having to 'retrain' everyone each day. His IV antibiotic does get done every day, four times a day, but he does have to remind the staff, and it has not been done every six hours as is prescribed even once. His wound vac care has been a bit sporadic as well. Many times, the staff is not able to get the vac sealed properly and thus he goes several hours without it working before someone has a chance to come and try to fix it. D has a history of cachexia, or wasting disease, which is when your body just doesn't metabolize the food you eat and, even though you are eating, you starve. It's like the nutrition pours out the wound, or is wasted. So a high calorie diet is very important. Also, when healing wounds, it is very important to have a high protein diet. The food he has been given is in such small quantities and is so low in nutritional value and protein, that we (mainly the in-laws, but sometimes me) have been supplementing his food on a daily basis. We bring him meals and cans of high protein nutritional supplements every day. It goes beyond bringing him a meal out of kindness; we are bringing him food for his survival. What they serve there, (and you have no choices) I would estimate is about a 1100-1400 calorie diet, and D is 6'1". Dinner might be a sandwich of two slices of white bread, a slice of American cheese and a slice of bologna (no condiments), a tiny cup of fruit cocktail, and a glass of about 4-6 oz. of grape juice.

As far as "living conditions" go, D is in a room where you walk in and a bathroom is on your right and a small closet on your left. Then his roommate's area is to the right and D's area is to the left. The length of the room is about a foot or so longer than the bed. The width of D's area is enough for his bed and a small nightstand type table next to his bed. He has a large window that looks out to a wooden fence. He has an overhead TV that gets fuzzy cable. There is no phone. The more ambulatory residents can go down to a small lounge that is the size of a large family room. There is a TV in there and cafeteria style table and chairs. There is nothing like a microwave or vending machine or anything like that. All the residents share two cordless phones that share the same line. I've had to negotiate with many residents to get access to that phone. ("Okay, you use it now and I'll call back in, what? an hour?") Anytime anyone is using the phone, the TV goes fuzzy. It is common to have someone break in on your phone conversation on the other cordless phone.

There is a chapel service on Sunday given by a volunteer baptist minister (Who has already tried to 'save' D), but other than that, I've seen no evidence of any sort of activities or outings offered to the residents. Except for the baptist minister, no one from the nursing home has come to visit D except for the nursing staff.

There are other things. D needs assistance going to the bathroom and often has to wait for long, uncomfortable periods. Used to having the freedom to monitor his own drugs, he has gotten into several arguments with the staff about them demanding that he takes certain drugs in front of them. Many of D's drugs are PRN, meaning he can take them when he feels he needs them. But the staff insists that he takes all the drugs. Certain things like laxatives and pain medications or sedatives, D has outright refused and has had to argue his way out of them. Imagine being forced to take a laxative you don't need and then having no one to help you go to the bathroom. Not only that, but many times when he does ask for drugs (or even drugs that are routine and should be on a set schedule) are not given to him for hours. We have also snuck a stock of drugs to him so he can take them if they neglect to give him some very necessary medication.

I absolutely shudder to think of the poor people in there who do not have the wherewithal to advocate for themselves or do not have family to assist them. When I enter the building, it's like I've entered a shelter for homeless kittens. I'm showered with attention and longing, especially when I have the kids, of course. I always stop and talk to the other patients. Sometimes, it is hard to get away. There is always someone looking out of the front door. The locked front door. I always want to ask if they want the access code. D has changed as well. He is usually a pretty private, quiet introvert who is happy just to tinker with his electronics. He does not have Internet access or a computer there, which is basically like taking away his joy in life. And his income. D does work a bit. He is a sales partner for Horrible Satanic Software Monopoly, and sells their Horrible Satanic Substandard Software Products. (But, hey, people buy them and then he gets money, so I live with that.) He sells online, and without his computer, he is out of work. Anyway, now in the nursing home he has a lot more anxiety, he lives for visitors and phone calls, he gets a desperate tone in his voice when I call and he reports all the goings on for the day. Which nurse he bitched at, which nurse fucked up his meds. Its like he wants to make sure there are witnesses.

Oh, and earlier I reported that it costs $3000 a day for his care in the nursing home. But I found out since then that this is NOT COUNTING the base rent for the room. The room rent is...ready? $5200 a month. Okay, so at the very cheapest $9/hr. wage, you could hire me and two others to do three 24 hour shifts for less than the room rent. And they are paying the additional 90,000 for his care. Smart. (I realize that they are paying for medications and wound vac and mattress and etc. out of that money that we would also be paying at home...but, still!)

So, now we are tentatively planning for him to escape when the wound vac comes off in about two weeks. He says he can take it that long. Here is the deal though. Make NO MISTAKE ABOUT IT. The nursing home is a PRISON. and the people inside are FALSELY IMPRISONED INMATES. Most of them involuntarily and with no hope of escape. The only thing that makes this tolerable for us is that it is temporary and D is counting down the days and biding his time. Imagine if this was your life. You are locked in a small, bland space. you have little to no personal belongings, you do not ever get out of the space you are locked in, except for a small, fenced in patio that you have to ask permission to go to. You do not choose what to eat or when to eat it. You do not choose when to go to the bathroom. You do not control your own medication or health care. You are not a person. You are a thing that is barely cared for just enough to stay alive so that your captors will make a profit. You don't have any say in who your direct caregivers are or how they care for you, and really, neither do they. No one that controls everything in your life has really any concern for your happiness or well being. You are just a pawn in a corporation. You are a commodity that they want to squeeze as much profit margin out of, and the way to do this is by cutting as many corners on your care as possible. You can't go vote, you can't have any say in government or policy in your position because you have no opportunity to. That has been stolen from you.

This is NOT because you are old, or sick or disabled. It doesn't have to be this way. There are proven better ways that will offer you a better quality of life, and cost society less money. This is because society thinks you are worthless. You provide no value to anyone so, hey, if a corporation is willing to warehouse your sorry ass and make a profit doing it, well...you should be thankful that's even allowed in this country. Because otherwise, the only other option would be to kill you.

(A better essay than mine on this subject can be found here.)

Comments

[val]

Hi from Val,
Just read this post & the last, I emailed you but didn't know if you got it, it was a pic of DW & Niam from my visit. Your update, gave me a better update on DW since he doesn't really get into specifics with me about his care there. In your last blog you seemed down and lonely, Lisa, you have reached a new beginning with having children in your life and there will be many battles along the way,(from an experienced mom/warrior)--I know you can find joy in everyday. Especially with children. Disabled or not, it can be difficult sometimes--as I can attest to--Thinking of you all everyday--Your SIL Val
(email me)

[shannon]

Ah, but clearly you ARE of value to some capitalist asshole making a huge profit off of that bed.

Poor D. I keep saying that, but geez, there's nothing else to say. How do you NOT get horrifically and debilitatingly depressed under those circumstances?

Glad he's past the half-way point and coming home sooner rather than later.

[Lisa]

I came across your blog and read this entry, and I really hope that your friend gets to go home soon. I'll be thinking of him.