The use and abuse of antipsychotic drugs, particularly in the elderly, is a widespread problem.
Physical restraints are generally illegal, especially in the aged and frail because it is so easy injure them using physical bed restraints (tying them to the bed!) They have frail bones and its easy to tear their delicate skin. Not to mention it is degrading and inhumane. We just don’t tie people up in nursing homes anymore.
Nevertheless, institutions are often horrifically understaffed and those on staff are overworked. So institutions have figured out ways to control their sometimes unruly residents by tying them down invisibly. Particularly those residents suffering from Alzheimer’s or other forms of dementia. Chemical restraints. Specifically, medications that sedate and make the residents more docile, or simply sleep through the day. The most commonly prescribed of these are antipsychotic drugs – Seroquel, one of the newer class of antipsychotics is one example. Haldol, an older class of antipsychotics is another. There are long lists of these and similar drugs that the FDA has warned should NOT be used in the elderly or dementia patients. Indeed Seroquel, Haldol and their many “cousins” are dangerous for the elderly and dementia patients especially. So much so that the FDA has mandated a “black box” warning about the use of such drugs. in the elderly.
If you are looking after or advocating for an elder, particularly if they are living in an Assisted Living Facility or Nursing Home, you should be aware of this issue and be on the lookout for it. It is a very widespread problem.
There are people in our community better versed in this topic than I. Recently, some good friends and colleagues recorded a TV program on the use of antipsychotic drugs in the elderly. I highly recommend it to anyone dealing with an aging loved one. It features: Elder Law Attorney Claire Curry, Dr. Mary Evans, geriatrician and president of the Virginia Association of Medical Directors, nurse Love Berkley, long term care specialist, and Emily Chewning, whose father suffered from dementia, was subjected to the misuse of antipsychotic drugs.
This is a widespread problem and happening in our own community every day. If you suspect your loved one is improperly being prescribed antipsychotic drugs, please contact me and I will be happy to help you sort through what can be done or refer you to an appropriate agency that you can work with to make sure your friend or family member is safe and being appropriately medicated.
This is going to be a tough post. I’m going to talk about death and dying. I’m going to tell you some stories of clients and friends who have died recently and what it was like.
In the course of my work, I spend most of my time counseling older folks and their adult children about their options. How to manage their stuff when their health fails. Who will make and what healthcare decisions need to be made. How will they distribute what’s left of their stuff when they die?
Those discussions often begin when a elderly parent has a medical emergency or takes a precipitous decline. Sometimes the parent or adult child has had the foresight to engage me or another professional before a serious health issue occurs.
One such client, I’ll call her Lucy, died last week.
Lucy called me up last year and engaged my service a year or so ago. At that time she seemed pretty healthy although she was growing older and frailer. Lucy was an artist. As is sometimes the case, I connected with Lucy in ways I don’t always do with my clients. Some of them I grow quite close to. I liked and admired Lucy – I think we were both immediately comfortable and at ease with each other sitting around her kitchen table in her comfortable old farmhouse surrounded by much of Lucy’s collected treasures. Lucy has several adult children. She agonized over whom to name as Executor over her relatively modest estate, whom to name as Power of Attorney and whom to make her Healthcare Agent. We settled all that and a week or so later she dutifully signed, had witnessed and notarized all her documents. That was that!
I ran into Lucy a couple of time over the last year. At an art show. At the SeniorCenter. She had divorced her first husband eons ago and never remarried. She did have a “companion” – he too was growing older and quite frail. But she took him everywhere and they seemed quite content in their circle of family, friends and community.
A while back – maybe 6 weeks ago or more – a mutual friend of informed me that all was not well. Lucy was sick. They feared it might be cancer. They were doing tests and would know more soon.
In my line of work, this kind of news is pretty common. When you work with older people, they are forever dying on you. It comes with the territory. So I was not surprised by this news though I was saddened and concerned for Lucy, her friend (who needed her to help with his daily needs) and all of her adult children, grandchildren and even great grandchildren.
I didn’t hear anymore until last week, when one of the sons, one called me to tell me that Lucy was in the hospital. In fact, she was in ICU. And that it “didn’t look good.” He wanted my help to sort out Power of Attorney issues and might I be available. I told him I could come by the hospital right away and to look for me within the next ½ hour.
By the time I reached the hospital ICU unit, the representative from Hospice was already there. Lucy and her sons were making plans to transfer her to Hospice House. She would be discharged there the next morning provided all arrangements could be made.
Lucy did not look good. Her breathing was very labored and she was panting a little even. She was on oxygen of course; though she was always a slight little thing, she seemed emaciated and sunken to me. Her skin color and tone was bad. Her eyes were darting rapidly from side to side and she was clearly very anxious.
The most I could do was reach out and take her hand and say hello. I said, “well, I guess I don’t have to ask you how you are…?” — that got a wry smile out of her.
The hospice person excused herself and looking at Lucy I could tell she was overwrought and tired. They had come in early that morning by ambulance into the E.R. and it was now after 5 p.m. After asking her permission to speak to her sons (which she gave) I suggested perhaps she was tired and needed some rest to which she promptly agreed. I asked her if she minded if we went down the hall – just the boys and I – to talk for a few minutes. She nodded with relief. Her eyes were drooping already (I presume she was already getting large doses of pain medication).
When I tucked Lucy up in her bed, I noticed she had ink marks on her chest. The kind they use when they do radiation treatments. She was cold so I pulled the blanket up further and touched her cheek by way of goodbye. I was pretty sure I would not see her again.
I walked with the boys to the “consult” room. They told me that they had been told just today that Lucy had stage 4 lung cancer. Then they told her there was nothing more they could do. I told her sons that now was not the time to worry about banks, or bills, or Powers of Attorney or any of that stuff. Now was the time to spend with their mother and each other. And then I left inviting them to let me know how things progressed and to call me if there was anyway I could be of assistance.
Lucy never made it to hospice. She never even made it out of the hospital. She was transferred off the ICU and died a few hours later in a “regular” hospital bed.
For six weeks (at least) Lucy had undergone tests and treatments of all kinds – she had struggled to breathe, had radiation, and all kinds of drugs and chemo for six weeks. Surely the medical community had already diagnosed her with stage 4 lung cancer. Worse, they had to know the treatments and poisons they were pumping into her were all for naught and indeed made what remained of her life more difficult than it had to be. Just organizing alternative care for her companion and getting to and from the dozens of appointments she must have had would have been a serious challenge.
This is not the first case I’ve seen like this. Nor the last.
Earlier this spring, I was called to see a man in UVa Medical Center. He was suffering from advanced liver cancer. He had been treated, radiated, chemotherapied and was preparing to be discharged home into the care of hospice. He wanted my assistance to write his burial instructions and Will. He was on heavy doses of narcotics. He could not tell me what time of day it was or even if it was night or day (there was a window right behind me. He was in pain. He was bloated and discolored and he could not hold his hand steady enough to write. He died the next day at home before he could finalize any arrangements and before Hospice could even sign him on.
Last year I was called by the administrator of a local Assisted Living to write a Will for a gentleman who was already completely debilitated and near death – blinded from the effects of diabetes and macular degeneration, he was in great pain and suffering from several serious medical conditions. The next day he was transported to Martha Jefferson Hospital where he lapsed into a coma and died of uremia and kidney failure without ever regaining conciousness much less executing a Will.
Three years ago, a dear friend – not a client – at age 80 developed a very aggressive form of lung cancer. When I told my partner, who is an R.N. and hospice case manager, about my friend and told her was called a “Pankose” tumor, she shook her head knowingly said, “six weeks.” My friend proceeded to deteriorate quickly. Yet the radiologists and oncologists continued to urge her to undergo radiation and if possible, chemo to check the tumor’s growth and “make her more comfortable”. The tumor was inoperable. It was so large and so entwined in the brachial nerves that there was no chance surgeons could safely get at it. After a few weeks, my friend developed a blood clot in the arm on the same side the tumor was growing. Her arm swelled to the size of an overripe melon. She was in agonizing pain yet the doctors insisted she continue to get up, dressed, climb in the hot car (it was June), travel to Mosby Radiation clinic, undress, climb on the table and lie flat and still on her back for 30 minutes or more. Weeks before she had already developed difficulty lying down at all – even laying propped on a wedge pillow in her own bed caused her pain and made breathing (not to mention sleep) difficult. Lying on a cold metal table staring at a radiation tube for ½ an hour was sheer agony.
I went with her on several of these trips to various doctors and clinics (she had accompanied me months before to MY appointments at UVa’s Cancer Center and visited ME in the hospital following surgery).
About three weeks in, she had just about given up and was asking the doctors about alternatives. Not yet ready to say “hospice” the discussion turned to “palliative” care. That is, treatment to make the patient more comfortable, relieve pain and reduce symptoms. A week later, my friend had just about decided to give up “traditional” cancer treatment (which was having no positive effect in any event) when the radiologist said to her, “Oh I’ve seen patients with this kind of Pankose tumor live for 5 years!” So my friend struggled back up on the table for her radiation treatment again.
A week later, we were in the hospital with her again. The clot was so painful and the swelling so bad that something else needed to be done. They were giving her difficult to manage injected blood thinners to try to help break-up the clot and prevent any new ones from forming. This treatment seemed to have no beneficial effect.
My friend was discharged home with the plan that radiation would continue along with blood thinners and a pile of other difficult to manage medications – the radiation was to help reduce the tumor and hopefully allow the clot to dissolve “over time.”
That week, freak windstorms – micro-bursts- took out electricity through large swaths of Charlottesville. My friend’s house was one of those without power for over a week in the sweltering heat. She could not be easily moved. By now, she was also on an oxygen tank which thankfully had battery backup power. She was, by now, pretty much confined to bed and couldn’t stay awake long enough to read or watch television anyway so she didn’t care about lights or power. We used damp cloths to keep her cool and pushed water to keep her hydrated and she seemed to be fine with the heat – she was old school and wasn’t crazy about air conditioning she said. She wanted to be in her own home. Soon, she would need so much pain medication – Oxycodone and Roxynol in combination – that it was difficult to get her bowels to move and she had become impacted, another very uncomfortable situation. She could barely get out of the bed to get on the bedside commode to urinate and then, because she was so unstead, only with the assistance of two of us. Even with the narcotics she was in excruciating pain and robbed of all dignity. Her hands shook so badly she could not administer her own meds so if no one was there to help, she went without her doses of painkillers. Or spilled most of it on her nightgown and sheets.
Still, the doctors wanted her to continue radiation. Finally, my friend said enough. She agreed to a “Do Not Rescuscitate” order and had the medical team refer her to hospice.
I stayed with her the day the nurse came to admit her to Hospice; she took her medical history and vital signs and explained what could be expected in the days to come.
At the end of that afternoon my friend was exhausted. Physically and emotionally, completely spent. As she sat back she asked me to rub her back which I did. She finally lay down and said, “I can rest now, can’t I?” I stroked her head and assured her she could.
Corrine died two days later. Almost exactly 6 weeks after my partner predicted she would.
One last story, I’ll cut it short:
A friend from law school developed cancer on his tongue. A young man, with a new wife and young child. He had a growing law practice when his life was cut short. I won’t go into all the details but he tried valiantly to fight it. He lost. Toward the end, as in the stories above, the oncologists and other traditional medical staff threw every mighty poison and potion they could at the cancer they were fighting. That’s what we do in America. We fight heroically. He also went down in immense pain and suffering —half his tongue cut away at first then the remainder of his tongue removed. More surgeries, chemo, radiation. Finally, he died after the excruciating pain as his bones cracked from the metastasizing cancer that grew in them. This is traumatic for friends and family to watch someone they love die this way feeling there is nothing they can do to alleviate their suffering.
We do not allow our dogs and cats to suffer this long and to die this badly.
Am I advocating euthanasia? Not at all. My point is that we have allowed “traditional” medicine to make decisions that do not serve their patients well. In fact, in some cases we have allowed them to conduct torture under license from the Board of Medicine.
Many, maybe most, patients don’t know that they can ask their doctors about alternative treatment plans. Palliative or comfort care. Holistic or natural treatments. Or that they can refuse treatments altogether. Hospice care, which, by the way, doesn’t mean you are actively dying. Hospice can come in six months in advance. And if you don’t die in six months? Your doctor certifies you for another six months. Many patients actually IMPROVE on hospice care and a few are actually discharged.
Most patients, by the time they are diagnosed with a fatal illness, are not in any position to absorb most of the very technical jargon and obtuse information that is thrown at them by medical professionals. Many of us simply are in a daze. We nod and go along with the treatment plan they set forth without our really grasping and understanding what the choices are. If any are even discussed.
As a cancer patient myself, I can tell you that ones ability to absorb any kind of information past the word “cancer” is greatly diminished. I’m sure that the same holds true for those receiving treatment for heart disease, kidney failure, Lou Gehrigs disease or any of the many other things that are ultimately become our “cause of death”. (N.B. I have been cancer free for 3.5 years)
Medical professionals are trained to “cure” – to cut, to prescribe medication or chemo, to radiate, do physical or other therapies – even when it is clear that such treatmenst are without benefit or that their value is outweighed by the suffering and pain they cause. Medical professionals – yes, doctors – as well as pharmacies, ancillary treatment facilities and hospitals – are also billing hundreds of thousands of dollars for every test, image, treatment, lab test, consult, prescription and every follow up visit that goes along with them.
There is much broken with the healthcare system in the United States. But one thing that I see that is consistently broken and badly managed is the way that we die. And those astronomical medical bills? They don’t die with the patient. They go to his or her estate.
Polls consistently show that most people wish to die naturally in their own homes. Yet the vast majority of people in this country end up dying in an Emergency Room. or ICU or CCU with a nurse or resident pounding on their chest and another shoving a respirator tube down their throat, along the way breaking some of their frail and delicate teeth and ribs. Many of the older people that die this way arrive by ambulance from the nursing home or assisted living where they believed they could pass quietly but that facility does not wish to have another “statistic” on their watch.
This kind of violent, tortuous death is not what I want. Most of the people I counsel do not want that kind of death.
As a patient you have rights. Residents in Assisted Livings and Nursing Facilities have rights. How do you protect them? You can help protect your healthcare decisions and see that your care plan goes as you want it to go only by making sure others know what your wishes are; that can only be done effectively in writing. Get an Advanced Medical Directive – and if appropriate – have your lawyer include appropriate language to consent to a Do Not Resuscitate order (DNR). Have a serious, open discussion with the person you appoint as your Healthcare Agent (Medical Power of Attorney). Ask questions of your physician or other providers, get an advocate if you can’t advocate for yourself (and most frail elderly and sick people are not able to do that for themselves)
Talk to your loved ones now – do not wait until a medical emergency is upon you! You can “die well” – comfortable, free of pain, and with dignity and you can do so in your home, in a nursing facility, in a hospice house or if you prefer, in a hospital.
Don’t wait until you get sick to do this. Do it NOW!
It’s been more than a week, I know. Things got a bit busy and since I am chief cook, bottle washer and everything else around this office, I have to set some priorities. Blogging is way down the list when clients are demanding my attention. Would you want it any other way if you were my client?
Well, let’s return and see how Mom has fared in the nursing home shall we? When I left off in my last post, Mom had just been “de-certified” from Medicare and moved to “unskilled” nursing bed. She is no longer receiving intensive therapy.
As the days and weeks go by, Mom becomes more depressed and hopeless. She seems dull and lifeless. Even her hair is limp and lifeless. When you visit she is often still in bed even though it’s the middle of the day. She’s not had a bath or brushed her teeth even. When you visit she is both irritable and angry, or cries and begs you to take her home. Visits become something you dread. More and more your visits are shorter and farther between.
One night, you get a phone call from the nursing home. Mom has taken a fall and hit her head. They think she’s okay, but it’s the nursing home’s policy that anytime someone falls and no one sees it happen they must automatically transport them to the E.R. to have them checked out. At the time of the accident, your mother was in pain, confused and panicked. As the EMT’s arrived and tried to put her on a stretcher and into the ambulance, she started to shout and became combatative. In order to safely transport her, the EMT’s needed to calm her down to prevent her from hurting herself (or them) so she is given a powerful tranquilizer and immobilized onto a stretcher.
Before you are able to arrive at the hospital, Mom is taken for an MRI. She is placed on a moving table and strapped down, then she is slid into a large cylindrical machine for 45 minutes. The machine makes all manner of very loud clanking, buzzing and ringing sounds while disembodied voices tell her to lie perfectly still. She comes out dazed, completely disoriented and not sure where she is or what is happening. It’s now 3 a.m. and the doctor decides to keep her “for observation.” They give her a drug that is meant to help her regain herself, an antipsychotic called Seroquel. It also acts as a sedative and knocks her out for the night.
The next morning she awakes and you are at her bedside. She has little or no recollection of what happened or why she is there. The doctor says she may have a concussion and wants to keep her for another day. She complains of pain in her hip and has severe bruising on her face. The last thing she remembers is at the nursing facility. She recalls ringing the call bell repeatedly for assistance to go to the bathroom. She says that no one ever came and her need became so urgent that she decided to get up herself rather than wet the bed. She thinks she may have had an accident on the floor and may have slipped on the wet floor. She must have fallen then. She recalls nothing else.
Meanwhile, back at the nursing home, the business office tells you that if your mother doesn’t pay for her bed, that is, put a “bed hold” on it, they will discharge her. With mother in the hospital again, your boss complaining that you’re taking too much time off, and the kids needing picked up from school, you can’t worry about this and set that aside so you concentrate on the urgent needs like the kids and mom in the hospital.
As it turns out, Mom has only bruised her hip and does have a concussion but its mild. However, the neurologist who treated her after the MRI of her head has also diagnosed her with vascular dementia (brought on by mini-strokes) which, while relatively mild now, will get worse over time. She ends up staying one more night in the hospital under observation.
The discharge planner comes around the next morning and starts discussing plans about where to send mom now. Come to find out that her bed at the nursing facility is now gone. Her belongings have been packed up and stored. She was “discharged” from the nursing facility to the hospital. However, the hospital never “admitted” Mom as an inpatient. She was only there on observation.
While this may seem to be mere bureaucratic technicalities, they have very significant consequences.
To discharge your mother to a nursing facility now means that she will NOT be eligible for Medicare for any rehab because she did not have the requisite 3 night inpatient stay she was merely there on observation.. Mother’s resources are nearly tapped out for privately paying for long term care. She has no long term care insurance. No Veterans or other benefits. That leaves very few options. In such cases, the only choice may be to find a “Medicaid” bed.
Medicaid rates (the rate at which Medicaid reimburses a nursing home) are substantially lower than the private pay rates. If a person comes into a nursing facility while eligible for Medicare treatment, the reimbursement rates are higher. But if a person has fewer resources and will be quickly dependent on Medicaid – public assistance – most nursing homes are reluctant to take them.
Nursing homes typically want to bill every penny they can to Medicare or other 3rd party source (supplemental, long term care insurance etc.) and/or if they can, they want the person to privately pay (out of their own pocket). These sources are usually quickly depleted by the monthly rates which average about $7,000 a month.
In your mother’s case, she used Medicare in her initial admission following the stroke, thereafter, she paid from her own funds but now that money is almost gone. Had she stayed where she was, she would simply have depleted her resources and an application for Medicaid would have been filed and she would have stayed right where she was. But that didn’t happen – instead she was discharged from that nursing facility.
The hospital’s discharge planner begins seeking a facility that will accept a Medicaid resident from the outset – no private pay, no Medicare billing. Almost all nursing homes are “dually certified” – that is, they accept Medicare and Medicaid patients. However, many of them limit the number of beds available to Medicaid patients. There is a therefore a shortage of certified Medicaid beds and the need is great.
But the discharge planner manages to find a bed for your mother after you indicate you can pay their private pay rate for two more months. So off mother goes to a new nursing facility. She is discharged from the hospital (to which she was never actually admitted!) and transported to the new facility.
Along with the little ditty bag of stuff from the hospital she carries is a discharge order and a list of medications. The med list now includes some things that were not on her regular regimen before. Among them are the antipsychotic medication, Seroquel. You notice that mom is much more agreeable, calmer and sleeps a lot more. That seems helpful to you. What no one notices is that Seroquel – and most of the other medications of this sort – carries a specific “black box” warnings about use in older adults. The warning reads something like this:
Elderly patients with dementia-related psychosis treated with antipsychotic drugs are at an increased risk of death. Seroquel is not approved for the treatment of patients with dementia-related psychosis
There are many potential negative side effects listed as well. Among them, are the increased risk for falls.
However, in a nursing home, the drugs are not administered in the same form we get them from retail pharmacies. Nurses never see the box or bottle the drugs come in, or the sheaf of fliers that come with them. Nursing facilities get “bubbled paks” for each patient from their own pharmacy or contracted pharmacy. So they never see the warnings.
The new nursing home is older, the carpet worn and dingy, the furniture nicked and upholstery faded. The walls are painted a dull blue and stained and marked up. It’s noisy, smelly and the only activity that is available on a regular basis is a big tv blaring very old movies and bingo every afternoon. The hot food is served on ice cold dishes and the cold food — iceberg lettuce masquerading as salad, jello, sherbet, cottage cheese and the like — is served on steaming hot dishes. Everything is stewed or looks like its stewed. All of the food is either over-salted or completely tasteless.
Mom is very complacent though. She sleeps a lot but doesn’t complain much. She has a lot pain so whenever she asks for it, they give her a narcotic painkiller for which her attending physician has written a PRN order or “as needed.” She is also labeled “high risk for fall” so she is no longer allowed to stand or try to walk and is restricted to a wheel chair and completely dependant on nurses aids to transfer her from bed to chair or chair to toilet. Her lack of activity and complacency about the food means she as begun to put on weight. She eats and snacks on sweets at every opportunity. To please her, you bring in more such treats when you visit.
The nursing facility is trying to turn a profit. They are limited by the fact that so many of their residents are Medicaid payors only. So, even more than any other nursing facility, such nursing homes attempt to make money by reducing expenses. The biggest expense is staff. They keep staffing levels so low that only the barest of care is able to be provided.
Lately, your mom has been having “accidents.” You mom is not incontinent. She can control her bladder fine but, because she must wait for aids to assist her to get to the toilet on time, she is wetting herself and the bed. Soon she is labeled “incontinent.” Rather than get her on the toilet on a regular interval, and unwilling to regularly change her and the bed, the aids now put her in an adult diaper day and night. Your Mom has become very docile and complacent on the drugs therefore they have no sense of urgency to see to her, she rarely rings the call bell anymore and never yells as she used to – she sometimes lays in a wet diaper for hours.
A year has come and gone since Mom first had her stroke. Mother’s Day is coming. You decide it would be a good idea to take Mom out for an outing, have a change of scenery, get some fresh springtime air. When the appointed Sunday arrives, you stop for some flowers at the grocery store and go to the nursing home early to help get Mom up and dressed. The aid has arrived to get her out of her diaper while you choose something nice to dress her in. Together, you and the aid turn her to sit her up and put her clothes on and to your horror you see large, gaping, raw sore on her tailbone. It is the size of coffee coaster, red and angry looking, seeping fluid.
Thanks to the lack of repositioning or movement, the constant weight on her backside, the skin breakdown from the urine and lack of cleaning or moisturizing of the skin, your mother has a giant bedsore.
This is completely preventable. Bedsores,(also called “pressure ulcers”) except in very limited circumstances, can be avoided by good skin care, repositioning and constant attention and inspection. Mom obviously has received none of this.
You race down to the nurses’ station and demand to speak to the unit manager. You raise holy hell. The Unit Manager, while sympathetic, is distracted by 3 phones ringing and several call bells going off, nods, says they’ll look into it and blows you off.
Monday morning, you call the director of nursing for an explanation. You leave three messages; all go unanswered. You call Mom’s attending physician’s office. They tell you they will send out the nurse practitioner to have a look and will call you back.
What are you to do now?
Tune in for Part IV! In which we explore the resources available to help you advocate for Mom.
I have recently been busy training all manner of folks – from Certified Nursing Assistants, to family caregivers, to Geriatric Care Managers (GCM) to my fellow attorneys (many practicing Family law but not Elder Law) on all aspects of decision making or mental capacity issues in adults, particularly in elders. What it means, what happens when it fails, and who some of the surrogate decision makers are who may properly step into an incapacitated adult’s shoes.
Wanna learn more? My friend, Elizabeth Swider, CEO Extraordinaire of Care is There, recently taped and produced one training session that I did for her flock of highly qualified Geriatric Care Managers (GCM). You can watch it for free, here:
For all the ads for Viagra or Cyalis or other drugs to help men with “Sexual Dysfunction” there seems to be no shortage of older folks have no trouble whatsoever doin’ it.
For folks that work in nursing and assisted living facilities one of the most unsettling issues they have to deal with is intimate relations between residents.
It’s true that in some older folks, either desire or function has diminished. In some cases its a health issue. In others the side effect of some drug. But for many older folks – even VERY old folks – sexual function is still alive and well.
While some are actively engaged in sexual relations, others are just looking for a intimate connection and that often includes close physical contact.
One major problem in long term care facilities is a lack of privacy. Most nursing facilities only offer “semi-private” rooms as their standard accomodation; that means two perfect strangers of the same gender sharing a very small space and a bathroom. Its hard enough to agree when lights are on or off, how the TV volume is managed, who has how much storage space. Imagine having to hang a sock on the doorknob to advertise you’re needing some privacy with your loved one when you’re in your 70’s?
Under such conditions its impossible to have a close, personal relationship with someone which may or may not include sex. But residents and their family’s should know that thanks to the 1987 Nursing Home Reform Act, they DO have rights, explicit rights to privacy for instance, and they should be respected. You can read more about “Residents Rights” here
Another problem is the moral or religious values of caregivers — nurses, social workers or aides who frown on consensual sex relations between adults and actively work to prevent it. The imposition of one’s cultural, moral or social beliefs on another is also wrong. The freedoms and rights surrounding beliefs and mores of senior citizens are to be as respected INSIDE a nursing facility as they are in the halls of the Supreme Court.
More recently, a seemingly new social problem has arisen. In 1969 the “Stonewall Generation” kicked off the creation of a new, “out and proud” gay and lesbian community. These folks built community in our cities and countryside, they created community centers and health centers catering to the gay communities unique needs; they won protections against discrimination in housing, employment and public accomodation in many states, and more recently won battles over gaysserving legally in the military and in some states, equal marriage rights. They came “out of the closet” in force – suddenly appearing in television programs, plays and movies, on the streets, in the bars, in your YMCA – and in your church, your schools and everywhere straight people were. But notice that if you were a gay activist or just coming out at say, age 25 in 1969, that means today you are 68 years old today. You may be in good health, but many others are not and “grey gays” are thinking about and talking about Long Term Care options in greater numbers than ever before.
If you are husband and wife, you can share a room in a nursing or assisted living facility. As a same-sex couple, you are treated as perfect strangers and have no right to demand a shared room with someone who may have been your lifelong partner.
If you are a husband and wife, you also have options with regard to Social Security, Medicare and Medicaid and other retirement benefits that may help preserve assets for the couple. As a gay couple, none of this applies and both halves of a gay couple are subject to the likelihood of being completely impoverished by the high cost of Long Term Care.
Its a little uncomfortable thinking about sex among seniors in nursing homes. Imagine how uncomfortable it is for some seniors – greying gay seniors – whose relationships are completely and officially unrecognized and often unofficialyl go unremarked. The issue is not really about the sex — although just as for younger people, sex is certainly a part of our lives and finding ways to meet the needs of seniors in this regard is important as it is for younger people. More importantly, its about preserving the longtime, intimate relationships that keep us healthy, vital and happy.
Denying that older people have intimacy needs and sex lives is silly. Forcing them to deny their sexuality is unhealthy. Forcing gay seniors back into the closet in order to live in our typical Long Term Care facility seems unconscionable.