This is the iced tea I’ve been drinking all my life and Hospice plans to take it away from me. What Hospice will do is discontinue Amelia, who knows how I like my iced tea, and replace her with their own aides, who come from regular for-profit home health care agencies. I terminated two of those agencies years ago due to poor service and replaced them with the Consumer Directed Personal Assistant Program (CDPAP) at Enable independent living center.
CDPAP is, unfortunately, one of the best kept secrets in the world of home health care. At for-profits, such as St. Joseph’s and Stafkings, the agency screens, hires, trains, schedules, supervises and pays the aides. In the CDPAP program, Enable screens and pays the aides but the consumers, also known as the patients, do the hiring, training, scheduling and supervising. If you—or someone living with you—has two brains cells to rub together, believe me, you want the consumer-directed program. (This is what is known as “freedom.”)
So Hospice is going to take away Amelia and replace her with strangers who will insist on making my iced tea their way. One of the really good reasons to have children and grandchildren—and to work really, really, really hard at having good family relationships—is so that when you’re old and sick then you will be surrounded by people to whom you are a lovely old lady, not a piece of business. Family, family, family—in the end, it’s all about family. Nobody teaches you that when your thirty-two and deciding where to buy a house.
Hospice also will provide weekly visits from a nurse who will deal with pain. I have no physical pain, and I consider nursing visits to be a pain, so that’s not going to work out well for me. Finally, if you are dying—which is what Hospice is all about—they will not refer you to Francis House.
“Francis House provides a home and an extended family to people with terminal illnesses so they can die with dignity and experience the unconditional love of God.” Francis House is where you go to die if you have no one who will hang around while you do it at home, but Hospice will not refer you there. I don’t know why not but it sounded like turf issues to me.
So while Hospice calls for medical records, hospital records, cell phone records (uh, no, that’s Lenny on “Law and Order” who calls for cell phone records) and whatever, my doctor also does a referral to Francis House, and what we learn is that Hospice won’t refer you to Francis House but Francis House won’t accept you until you’ve been accepted by Hospice.
I’m not kidding, folks. This is all about poverty. If you have money and can pay for services privately, then you can get whatever you want. If you are poor and dependent on your neighbors (i.e., Medicare and Medicaid) for end-of-life services then you should seriously think about committing suicide.
So Sister Ida from Francis House comes to interview me and that’s probably the biggest bummer of all time. Francis House is totally independent, which is to say they don’t bill anybody anything for the time you spend there; they just ask you to please consider what you can give them. They had one converted house on the west side but fairly recently bought the adjacent house and remodeled and linked the two houses.
Now, here’s the horror: Sister Ida says that she does about five home visits every day and they are all to people like me who are alone. Sister Ida must be getting some serious support from God because can you imagine doing her job? Going from one old sick person to another old sick person all day. Each one is alone and looking at you with tear-filled eyes and saying “Please don’t leave me alone anymore.”
And you have to say, “Sorry, lady, there’s no room for you.” Medicare will pay about $1500 a day for you to be on life-support in the ICU, but they will not pay a cent to let you die in a nice quiet homey place. “Room and board are not covered by Medicare if care is received in the patients home or if they live in a nursing home or hospice residential facility.” (The New York Times Company)
Hospice does not maintain any residential facilities. And it does not refer to Francis House. However, Francis House is the only residential facility in Onondaga County that lets you die. It’s a really nice place—the walls are colored, not hospital-white. From the point of view of the person who’s dying, that is serious quality of life. Also, Francis House has these really nice ladies—volunteers?—out in the kitchen who will feed you anything you want whenever you want it. (Keep in mind that dying people rarely have an appetite for surf-n-turf. In my family, the dying words are most apt to be “ice cream would be nice.”)
Then Sister Ida gets to the really bad part: the average resident spends two months in Francis House. You know what that means? It means that Francis House has such a long waiting list that you have to stay home alone in bed for most of the end of your life. They can’t get to you on the list until you’re basically in a coma.
So, as noted, if you are poor and alone then suicide may not be the best option: it may be the only option.