My Life in a Nursing home Not as a Resident

The Elderly Fear Nursing Homes
If you bring up the subject of a nursing home to most people, you will always get a strong reaction. Either people try to steer you off of the subject, because it makes them uncomfortable, or they say things like: “I’d rather be dead than have to spend my life in one of those places.” Very seldom are people neutral when it comes to the feelings about a traditional nursing home, if asked for their opinions. The elderly, especially, are no exception.
In the fall of 2007, an independent company ran a survey asking elderly people what they feared most about growing older. The results were this; the majority of elderly feared the prospect of having to live the rest of their lives in a nursing home more than they feared death. The survey stated that only 3% of seniors surveyed actually feared death. To many elderly in our society, nursing homes are inhumane places. Places where no one, in their right mind, wants to live and they represent losing our dignity once we are assigned to live in one. When an older person is assigned to a nursing home, as one resident said: “It is social suicide and we all know it. We are put in here because people, mostly our people, want us out of sight and out of mind. We may be old, Honey, but we aren’t stupid, at least not all of us, yet.” I realize not many people in our society are concerned with what happens to elderly people in nursing homes, although, unless people plan to live forever, they will grow old and should be very concerned. The chances of nearly everyone in our society needing nursing home services when older are very high. Maybe this idea sounds too much like a crusade, and maybe rightfully so because it means my 1960’s social conscience is still alive and well. Whatever anyone feels about this subject, the fact is, we all will grow old, no exceptions, excluding those who die young, and these issues, concerning nursing homes; will eventually need to be faced by nearly everyone but the very rich, in American society. Recently many people have been quite upset over the public health care debate because certain factions in the debate seem to be fixated on what some have dubbed ‘death squads.’ The death squad debate seems to stem from some people thinking it will be mandatory for physicians to have end of life discussions with elderly patients. If this is what some people consider death squads, then nursing homes in America have already been acting as such death squads, it is simply that no one noticed or cared, until we started to debate public health care. I have worked with the elderly, in different capacities, for many years, for a while as a home health aide, as a nursing assistant and most recently, as a Social Services Director. If Americans think President Obama has placed stipulations in his health care proposal about ‘death squads’ because they think it will be mandatory for older people to discuss end of life plans with their doctors, then nursing homes have always fit this description. Staff members in the nursing home, where I worked as a Social Services Director, were always approaching me to ‘discuss end of life, or Hospice plans’ with the elderly and their families. It seems nursing home staff eventually do get tired of sending elderly people to the ER when they become ill because ‘the ER cannot do anything more for them anyway’ as the reasoning goes. Unfortunately they are correct because Emergency Room personnel will only do so much and apparently feel time and life saving efforts are ‘wasted’ on very old, very frail people. The problem, when the elderly decide to get hospice services, is Medicare will not pay for any more room and board in a nursing home, so families have to pay out of pocket for their loved one to stay in the nursing home, which can be a significant cost. Sometimes when a person needs hospice, they have come in to a facility for therapy and Medicare is covering the cost, so the choice may now become; pay out of pocket for room and board or, if you have no money left, you get to die in pain so as not to lose your Medicare. As the laws are set up right now, Hospice workers are able to get a higher dose of medications to help ease any suffering the dying individual may experience as the body’s mechanisms begin to shut down. A dying person usually will experience much anxiety because of this also. Hospice workers can obtain higher doses of anti-anxiety medications to help with this anxiety. No dying person should have to die in pain and needless suffering. We, as Social Workers, were discouraged from offering Hospice services to families, even when it was clear they were dying. The nursing home would place people on what they called comfort measures. Those measures were exactly that, to keep the person comfortable, something the nursing home does for everyone anyway. Unfortunately those measures are not enough to really help keep a person comfortable, but to simply mean they would not be sent to the ER needlessly. Comfort measures do, however, allow the nursing home to milk Medicare of payments by having the therapy departments write up bogus therapy orders so they can bill Medicare. It’s a scheme of the worst kind simply to line the nursing home’s pocket. And a good number of people cannot return home for hospice services either, because many residents either have no family left, or they have no one who can be in their homes with them 24 hours a day, which is required by hospice for home care. The nursing home directors try to discourage hospice care because it can mean the facility gets no more Medicare payments, which means it guarantees the facility gets their money, where paying out of pocket does not. Medicaid recipients, whose family request hospice services, are covered for up to 95% of their room and board; however, if a resident does not qualify for Medicaid the room and board must be paid out of pocket. It is not unusual for a hospital to be in such a hurry to discharge an elderly patient; they come to a nursing home in need of hospice care. This certainly does not sound like any choice I would care to have to make when I am ill. Worse yet, I would hate to burden my loved ones with making those difficult choices for me either.
After talking to people over the years who had come to a nursing home, either to live or just for a short stay to complete therapy to be able to return home, it seems almost unanimous among them that what they all fear most about having to live in a nursing home is; loss of independence, loss of autonomy of being able to go where they want to go whenever they want to, fear of being forgotten, fear of being able to make their own decisions and fear of no longer being a part of a community. Basically, they fear losing all of the things we take for granted that help contribute to everyone’s quality of life. Especially the ability to make their own choices in daily living, such as; shopping when and where we want to, when we want to go to bed, when we want to get up, when we want to decide to take our medications, if we want to have a cocktail and even something as simple as deciding if we want to go outside or not, no matter what the season is. Once a person loses their independence they often lose their will to live. Sometimes, if the elderly think it is expected of them to be less independent, they may walk slower, they may lose their cognitive abilities more rapidly and all of this can be detrimental to their health as well. Loss of independence can make an elderly person feel isolated and often leads to depression.
In the case of Mary, mentioned earlier; we have the care plan meeting with her and her family. Her family consists of her oldest son, her granddaughter and her granddaughter’s husband. The nurse assigned to Mary, the physical therapy person, the dietitian and Social Services, me, are also present. I do notice that Mary’s nurse aide is not present, when I ask about this I am told it is not policy to ask the aides to attend. I know that nurse aides are the primary care givers and probably know more about Mary than any nurse who only dispenses her medications to her. The nurse aides care for her and assist her daily, yet in traditional nursing homes, are left out of the all important care plan meetings. There is a critical shortage of nursing assistants in America, and I can see why this is when I notice how they are treated in traditional nursing homes.
Anyway, back to Mary’s meeting. A month later, since Mary came to St. Barley’s for rehab, she had taken to staying in her room all day, except to come to the lobby to call a cab, and she quit eating. By the time Mary’s meeting takes place, she looks haggard, skinnier and has bags under her eyes like she hasn’t been sleeping much. I visited her nearly every day and had voiced concerns to the nurse. The nurse’s response was to ask the MD for sleep medication and an anti-depressant. None of those medications had seemed to help Mary much. The physical therapy person starts out by explaining why it is unsafe, in her opinion, for Mary to live by herself in her own home. To the therapist, the MD and Mary’s family, it makes perfect sense for Mary to live at St. Barley’s where she will be better taken care of, in their eyes. Mary responds by telling them it is easy for them to say because it is her life, not theirs, that is being disrupted. After a meeting that takes an hour and a half, her granddaughter and son agree to allow Mary to return home in three weeks and they will take turns, along with a neighbor, to look in on Mary to be sure she is safe. They agree only if Mary will allow the link to life services, which involves wearing a necklace with a button to push for help, if she falls or becomes ill. Mary, with tears in her eyes, agrees to this. It is settled, she will go home in a few short weeks.
This turned out to be a good solution to Mary’s problems and her unhappiness about living in a nursing home. What about those residents who either have no family, or the family lives a long way away? All a traditional nursing home can offer in those cases is usually medications; medications for sleep, for appetite or medications for depression. I never heard, in traditional nursing homes, that the solution should be to usher in culture changes of any kind. The facilities always feel the resident has the responsibility to conform to the facility, not the other way around. Whenever St Barley’s administrator mentioned culture change, it was nothing to really make the residents’ lives nicer, or richer. To her, it was simply for marketing purposes only, to give the illusion of a significant change. Traditional nursing homes are always facility oriented, not person oriented, yet they make it their business to deal with people.
Down the hall in a different wing at St. Barleys, another new resident, Carol recently told me how she ‘put herself in here because she did not want her family to have to worry about checking up on her all the time.’ But she does say, with some bitterness in her tone: “I have six god dam children and not one of em can seem to take me in, the damned ingrates.” Carol is in relatively decent health, but she is legally blind due to macular degeneration and cannot drive and finds it difficult to live on her own anymore. Even further down the hall, in another wing, a married couple, Mr. and Mrs. Doran reside. Mr. Doran, much like Mary, has taken to crying, on occasion, and tells how he and his wife have spent the entire $100,000 they had ‘saved for retirement’ to pay for their stay here. He says now that the cash has been spent, they have to put their house of 40 years up for sale to continue to live here. He says he wishes they had spent every cent on enjoying an early retirement, but, instead it has all gone for room and board and medications due to his wife’s sudden illness. The sad look in the husband’s eyes tells me the optimism he once felt about retirement has been replaced by hopelessness and despair. Both of them are now in their 70’s and he is not strong enough to do the lifting that is required in order to take care of his wife’s needs in their home. All of these people, even though they reside in the same nursing home, are each experiencing different attitudes about the whole experience. One resident appears somewhat satisfied she made the ‘right’ decision to live in the nursing home, but the decision was based on what she felt her family needed and has expressed that she would prefer to be living ‘in her own home’, and the second one is feeling like he and his wife have been cheated out of a pleasant retirement and now they help support an impersonal nursing home with their hard earned money. This sort of drama unfolds way too often in nursing homes all across America. I have witnessed the despair felt by some people who find that they are living in a nursing home suddenly and who not only hadn’t made plans to live in one, but somehow thought it would never happen to them. Yet there they were, living not exactly what they thought their ‘golden years’ would be like at all, nor the American Dream.