Monday, September 20, 2010
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.
Sex and the Nursing Home Resident, a Taboo Subject
Nursing homes definitely are not places people think of anyone ever desiring sex, much less having any. More elderly, even in nursing homes, not only think about sex, they desire it but are usually deterred from thinking about it and definitely denied it, if staff has anything to say about it.
Most staff in nursing homes think older people having sex is disgusting and all old people who want sex must be perverts. It is expected that when old people enter a nursing home to live, they will automatically become eunuchs, understanding that sex was parked outside the doors and is a privilege only for the young, or at least, only for old people who live outside in the community. To nursing home staff, finding an empty room for people to engage in a sexual act, means having to clean a room that was already clean, and best left that way, in other words, more work for them. To corporations and owners, an empty room set aside for such purposes means a room not producing money 24/7 because it is empty.
This is almost like living in a concentration camp, minus the torture, unless you count the harsh words from staff as torture, maybe to some it is. Entering a nursing home means giving up all pleasures, except for those sanctioned by the facility. Perhaps there needs to be brochures that not only tell of the benefits of living in a nursing home, but also list the former pleasures you have to give up. Or maybe it would suit their marketing department if the brochure listed the pleasures sanctioned by the facility. Only things like bingo, reading is ok, looking out the window is fine, blah, blah, blah. I recall reading recently about a man whose wife is living in a nursing home, she has dementia and it appears that dementia enhances some people’s sex drive. He appealed to the court to be able to have sex with his own wife because the nursing home refused to allow it. The judge ruled in favor of the nursing home, thus probably subjecting the wife to taking a psychotropic medication. Apparently a drugged person with dementia is preferable to allowing her to engage in sex with her husband. For some odd reason, nursing homes and courts think they must protect elderly from sex acts, especially if they have dementia. An older person with dementia is not the same as protecting a teenager or child from engaging in sex because they should not be exposed to sex until the age of consent. Most elderly people have lived their lives, are likely not virgins and therefore will not be traumatized by having sex. As things stand, if a person with dementia makes sexual advances towards a staff member because that person may remind them of their loved one, it is labeled a behavior and labeled as perversion. Usually if a staff member is kind but firm and sets down rules, the person with dementia will back off. It has been my experience that most staff people either delight in getting a resident in trouble, or are just pussies and refuse to handle any problems with residents on their own. Staff will usually like to have Social Services talk with the person who has dementia, which, by the way, several hours later has no meaning whatsoever because the person has forgotten about the incident due to memory problems. Or the staff likes Social Services to talk to family members, which in most cases is very embarrassing for them because the family may not understand the mechanics of the disease and how it works on some people. Wives and husbands especially usually get very embarrassed because they fear their loved one will get bad treatment or be thought of as a pervert.
Sex in nursing homes has long been a taboo subject with staff because no one wants to think our parents or grandparents are interested in sex any longer. It is a totally ridiculous myth that old people never think about sex anymore when they have reached a certain age. It is so not true. I really doubt any of us will stop thinking about sex until we have taken our last breath. Sex is a natural part of life and if an elderly person has enjoyed a healthy sex life for many years, they should not be told it is wrong simply because staff has a problem with the idea. Staff had better get used to the new ideas because as Baby Boomers grow older and enter a nursing home, it is pretty likely they will bring their 1960’s attitudes with them. Those attitudes meant sex with whomever they darn well pleased. It is becoming more obvious, from research being done and various books having been written that elderly people, not living in institutions, have sex. The old saying: “There may be snow on the roof, but there is still a fire in the fireplace” apparently rings truer than previously thought.
Doris a sweet 90 year old lady who had been at St Barley’s for about two years liked to approach some of the men she thought were ‘cute’ as she liked to put it. Doris was in the habit of having a healthy sex life before coming to our nursing home and she ‘missed the companionship of a man.’ Doris was very alert and oriented and sharp as a tack. She also was still a very handsome woman, even at 90. She would sometimes try to get to know some of the gentlemen who came to St Barley’s, either for a long-term stay or for therapy.
One Monday I returned to work and the DON approached me, red-faced, talking fast and acting almost frantic. “You have to have a talk with Doris right now” the DON said. She often liked to tell me I ‘had to talk to someone, right now or immediately’ without telling me why or what about. I asked her why I needed to talk to Doris and the DON said; “Because she has been acting cozy with Arthur and trying to hold his hand all weekend.” I knew Arthur was not married and he had been a widower for well over 15 years, so Doris was not exactly acting all jiggy with a married man or anything. The DON said: “You have to tell her to stop it right this minute or we will call her daughter.” “Arthur is not coherent; he has slight dementia and does not know what Doris is trying to do.” I had to admit, from this scanty information, I did not know what she was trying to do either, except be very friendly with a gentleman. The DON told me I had to tell Doris there is no man in our facility that is with it enough to understand any sexual advances. I told the DON I would simply talk with Doris and try to get her side of the story. “What for?” she asked. “I have already told you what is going on.” In the DON’s opinion, I only needed her to tell me what is what and she felt like I did not trust her sole judgment, and frankly she was right, I did not. I could not take one side of a story, even from staff and not talk to the other person, it simply wasn’t fair.
As I walked to Doris’s room, I mulled over in my mind what to say. I knew I was going to ask her what was happening, in her words, and I kept thinking: “Do I say: ‘Doris no man in his right mind wants your advances.’ No that did not sound right, but neither did; ‘No man is coherent enough to know what your advances mean.’
I found Doris in her room, sitting in the big chair next to the window. I said: “Doris, did something happen this past weekend?” “Why?” she asked. I explained to her the DON said some aides observed something that might be construed as inappropriate gestures toward Arthur. I said no one was accusing her of anything, but I needed to hear from her what went on that might possibly look like something more than an innocent hand holding. “It’s that bitch of a head nurse, isn’t it” she said. “I heard her talking at the nurse’s station to an aide about it.” I told her I wasn’t at liberty to say who talked to me, but she shook her head. “You don’t have to tell me, I already know it is her.” “All I did was talk to Arthur, I swear and I did hold his hand during the movie in the lounge. Did I do something wrong?” She asked. I assured her that if that was the whole story, then no, she was not doing anything wrong.
I told the DON what Doris told me and she said she knew Doris was lying and I had to now call Doris’s and Arthur’s family and make out an incident report to the state so we did not ‘get in trouble’ for sexual abuse. I explained I did not see how sexual abuse had entered into this just by holding his hand. I also said I didn’t think it appropriate to call both families to upset them. “Just do it” she said. She also said she was going to call the aide who was on duty over the weekend and ask her the true story. I was flabbergasted and did not understand why she felt the aide and herself were the only ones giving me the true story. I knew the DON was always over impressed with her position, but this was entirely ridiculous in my book. The DON gave a deep sigh and abruptly turned on her heel and walked away.
By late afternoon I was called into the Administrator’s office and the DON was in one of the chairs in front of her desk. The Administrator motioned me to have a seat and I did. As soon as I sat down, the inquisition began. “Did you call Doris’s and Arthur’s families today?” she asked. “No, I said, I wanted to wait and try to get to the bottom of it all first. “You know we have to report all incidents of abuse as soon as possible” she told me. I explained I failed to see it as an abuse incident. I looked over at the DON, who was looking at the floor and refused to even look my way. She always did this crap when she knew she was getting someone into trouble. “Give her the new paper” the Administrator said to the DON. She handed me a new behavior sheet, she claimed she found, made out by the aide who was on duty over the weekend. I thought, sure you did, and took the new paper. The dates and time indicated it was written over the weekend, but it could have very well been fudged that day for all I knew. I looked at the paper which now stated that Doris had been observed, by the aide, rubbing Arthur’s leg up to his groin area. Somehow the act went from holding his hand to rubbing his leg and groin. I seriously had my doubts, but I knew from experience there was no sense disputing this new evidence because the Administrator would always take the nurse’s account as gospel. “You need to talk to Arthur and make sure he has not been traumatized by all of this” the Administrator told me. I wondered why they thought my talking to Arthur would do much good. If he did not understand the advances because of his dementia, how was he going to understand what I was asking him?
This was an innocent act that had gotten blown way out of proportion because the sex subject in this nursing home was so taboo, the nurse and aide were willing to get a resident in trouble over it. I was seething as I left the Administrator’s office because she said she had to ‘write me up’ over not following through. I was pissed and when she asked me to sign the paper I refused to do it. This was just part of her trying to ‘make a case’ against me, trying to make me look incompetent so they might avoid a lawsuit. I was heading for 59 years old myself, not as cute and charming as the 25 year old young man they had in mind as my replacement, so in order to avoid being sued, they had to try to make me seem incompetent. Maybe the time they trumped up evidence, I was incompetent, because the DON and Administrator conveniently lost every single piece of paper I was giving them from then on. It would not matter to the Administrator if I had copies of those papers either, because she’d swear she never got them on time. They did not want an age discrimination suit, so trumping up evidence suited their purpose. What pisses me off about the whole thing is that a nursing home is the last place age discrimination should be going on. But this incident triggered a vendetta against me that I can only construe as age discrimination since I was not the ass kisser they wanted in my position. The older social worker the Administrator allowed to stay on was able to do so simply because the older lady was part time, a good friend of the owner and his wife, and they needed someone to man the front desk on weekends, because no one else would do it every single weekend, like she would. So they were using her pretty much anyway. The DON, already had made remarks at some of our meetings, about the older lady in Activities, who was a part time assistant there. The DON would look at her hand written care plans at our care plan meeting and say: “Her handwriting is getting pretty bad, because she is getting up there in age, I suppose.” It is not a comforting thought when the DON really does not like older co-workers. Residents who are old are fine with her, they pay rent, but she made no bones about not liking older co-workers. She usually made disparaging remarks about how they just ‘were slipping in their paperwork.’
None the less I left that office feeling totally undermined once again by the elite nursing group in this facility. My four year degree meant absolutely nothing to the DON or the Administrator, who, by the way, only possessed a GED herself. In Indiana, if you complete a six month internship with a licensed administrator, you are eligible to take an exam and become an administrator too, with nothing more than a GED or high school diploma.
If someone suffers from dementia, most adult children are under the impression their loved one does not fully understand what is going on. While most may not fully recall being teenagers and carefree with sex, it is doubtful having sex as an older person, will create the trauma adult children fear it will. It is not like older adults have never engaged in sex and there is no virginity to protect. Some medical research suggests a good dose of sex between two people who like each other, is in fact, good for their health and may improve a person’s mood.
In my opinion, more adults need to have their lawyers draw up a sexual power of attorney so it isn’t some big shock to family and loved ones if you want sex in your older years. Staff should be able to determine if it is safe for some people, but this would have to be on an individual basis. This decision should never be an OMG, no sex as some sweeping rule for all people. This is another issue where if someone, especially my children, God love them, tried to come to my house and tell me sex is over, would surely have a fight on their hands. So along with power of attorney for our assets and living wills, everyone should consider a sex power of attorney so no one is shocked, least of all institutions. Hey, play me some good 60’s rock and roll, give me a soft light and let me go!!