As difficult as it can be to find a good nursing home and secure space for your loved one, the challenge doesn’t end there. Dementia caregivers in particular must be aware and be prepared to take action if the nursing home tries to evict your loved one.
So many people are not aware of the amount of nursing home evictions that take place each year in the US and the chaos and stress it causes families. I experienced a form of this when the skilled nursing facility where my father was placed after being discharged by the hospital said it could no longer care for him because they didn’t have staff that could provide dementia care. My father was not able to return home because he could no longer walk and my parents’ condo had stairs. My father was stranded and eventually was placed over an hour-and-a-half away from my parents’ home in the closest facility with a memory care wing.
A recent New York Times investigation may be a revelation to some, but not to family caregivers who have loved ones in nursing homes, especially memory care centers. The investigation found that at least 21 percent of nursing home residents are on antipsychotic drugs. “Chemical restraints” have become a convenient method to reduce the hands-on care needed for those with dementia in nursing homes which are chronically understaffed. Savvy (and/or devious) nursing home operators and doctors have found workarounds to circumvent the weak government regulations that attempt to curb this dangerous practice.
This is an issue near and dear to my heart. I’ve written about my father’s experience in a memory care center during the last year of his life. He was given Risperidone, a drug typically given to adolescents with schizophrenia. It turned my father into a zombie and made him unsteady, causing several falls which resulted in ER visits. To add insult to injury, my family was left with owing thousands of dollars for medications used to inappropriately sedate my father.
Here is what I wrote about my dad’s experience with the drug:
I remember the indifferent attitude the doctor at the local hospital had when I questioned the use of Risperdal, which was already controversial even while my dad was still alive. The doctor just shrugged his shoulders and said they had to continue prescribing what the doctor from the nursing home had ordered. He asked me if I knew what it was for and I responded “to make patients like zombies so they’re easier for the nursing home staff to deal with” and the doctor agreed with a laugh. I did not find it funny at all.
Johnson & Johnson paid over $2 billion in fines to settle charges levied by the government that they promoted off-label use of the drug to elderly patients with dementia and even provided kickbacks to doctors and nursing home operators. The massive fine didn’t hinder the practice. The drugs of choice are now Haldol and Depakote, according to the New York Times investigation. Doctors are adding a diagnosis of schizophrenia to nursing home residents with dementia to get around government regulations. Haldol is used to treat schizophrenia and therefore doesn’t have to be included in the mandatory reporting of antipsychotic use that nursing homes must provide to the government.
The underlying problem to the overmedicating of nursing home residents with dementia is staffing shortages. If facilities were adequately staffed and had special training in how to care for those with dementia, the need to sedate residents would be alleviated. Families aren’t going bankrupt just so there loved ones can be turned into zombies through chemical restraints. Nursing home operators get access to medications that a family doctor would likely balk out if a family caregiver asked for it to manage their loved one at home. The government’s response continues to be insufficient.
My advice is that if you have a loved one in a memory care center, review their medication list on a monthly basis. If you are not comfortable with your loved one being on a particular medication or you witness alarming changes in your loved one’s physical or mental state, speak up. If you are looking to move your loved one with dementia into a memory care center, ask about their use of off-label medications. Ask that they seek your permission before prescribing such drugs. We must advocate for our loved ones to be treated humanely and not as an experiment to sedate into submission.
This week, the Biden administration announced that nursing home workers employed at facilities receiving Medicaid or Medicare funding will be required to be vaccinated against COVID-19. The ruling will have a wide impact, as many nursing homes across America rely upon government funding. As of now, approximately 40 percent of nursing home workers remain unvaccinated.
The decision, while not entirely unexpected, is drawing a mixed reaction. To give you an overview, here are some of the
Some nursing home administrators welcome the ruling, because they want all of their workers vaccinated and feel this might offer the incentive for those who have been reluctant to do so.
Other nursing home owners fear that they will lose a critical amount of their workforce, as those who are adamant about not getting the vaccine will leave for fields that do not require vaccination.
Still others feel the ruling is incomplete and doesn’t go far enough. They want to see all healthcare workers be included in the vaccine mandate, instead of nursing home workers being singled out.
Some nursing home administrators are calling for a more robust educational campaign from the federal government to answer the questions that their vaccine hesitant workers have as part of the vaccine requirement ruling.
My opinion is that our most vulnerable population deserves to be treated by those willing to provide the safest care possible. With the highly infectious delta covid variant currently impacting the country, I don’t believe it is safe for workers or nursing home residents to remain unvaccinated. For families paying several thousand dollars per month for their loved one’s care, asking staffers to take precautions to maintain workplace safety is not unreasonable. With companies like Disney mandating their employees be vaccinated, it shouldn’t be controversial that healthcare workers would be expected to do the same. But we are living in extraordinary times, and there have been several high-profile protests at healthcare facilities around the country, with workers pushing back against mandatory covid vaccinations.
I do fully support individuals having autonomy over their bodies. If a person chooses to decline the covid vaccine, there are plenty of jobs available that do not require the vaccine and do not involve direct contact with vulnerable populations. The concerns about a nursing home staffing shortage are legitimate, but staffing was an issue well before the pandemic, due to the low wages and little to limited benefits offered by the industry. I support a better educational campaign about covid and the vaccine so nursing home workers can make a personal choice based upon science, not misinformation shared on social media.
Those who have been following the coronavirus pandemic closely are likely not surprised that a concerning variant has emerged. This was one of the scenarios that worried infectious disease experts. Here is what caregivers should know about the delta variant:
What is different about the delta variant: It’s more transmissible, and is running rampant through America’s large swaths of unvaccinated populations. The debate is ongoing on whether it causes more severe disease. Hospitals across the US are seeing younger people fill up beds, which is different than earlier iterations of the pandemic.
How to protect elder loved ones: The good news is that roughly 80 percent of Americans over the age of 65 have been vaccinated, according to the CDC. If you have an elder in your life who has been reluctant to get vaccinated, now is the time for them to seriously reconsider. For those who cannot or will not get vaccinated, extreme caution when interacting with others, especially in public, is critical. That includes masking and limiting contact with unvaccinated people.
But what about the breakthrough cases in fully vaccinated people? Vaccines have never been full-proof. The influenza vaccine in particular is a roll of the dice each year when it comes to effectiveness. The COVID-19 vaccines face the same challenges, especially when it comes to variants. While the studies showing that vaccinated people can carry a similar viral load to the vaccinated, it’s important to focus on the bottom line. The overwhelming amount of people who are being hospitalized due to the delta variant are unvaccinated. The vaccinated breakthrough cases typically result in asymptomatic or mild symptoms. Down the road, booster vaccine shots may be necessary to address variants.
What about nursing homes? According to the government, 81 percent of nursing home residents and 58 percent of staff have been vaccinated. A concerning study found that aides working in nursing home have lower vaccination rates. These are the staff members who interact with residents the most, so for the well-being of residents and staff, more facilities may consider vaccine requirements. If you have concerns about unvaccinated staff members at a facility where your loved one resides, talk to management. It’s also possible that facilities will reimpose visitation restrictions to reduce the risk of outbreaks of the delta variant.
Will this ever end? I wish I had a crystal ball. Everyone is exhausted. It is particularly disheartening for those of us who followed the guidelines and got vaccinated, and now find that a variant is threatening to upend the cautious reopening phase. Some experts approach the future of coronavirus like seasonal influenza, where as a society we take precautions as we can, but accept that there will be cases, hospitalizations and even deaths in vulnerable populations. Former FDA commissioner Scott Gottlieb estimates that we are further along with the delta variant than we may think, and that while brutal, the variant will sweep through the country fairly quickly. Other variants may follow, so stay vigilant when caring for anyone who is older or in a vulnerable population. If it is safe for you and your loved ones to do so, try to stay engaged in activities that you enjoy, whether it’s being out in nature or in low-risk social situations. It’s important not to overlook our mental and emotional health while we address COVID-19 variants.
What would you do if you receiving a notice that the nursing home where your loved one resides is closing in a few days? It’s a nightmare situation and a case is unfolding right now in metro Atlanta.
In the case of Tranquil Gardens Assisted Living and Memory Care, residents and their families were given just three days’ notice that they must vacate the premises due to foreclosure on the property. The facility housed those with dementia and also provided hospice care, and families are outraged that their loved ones in fragile health are being kicked out of their homes and forced to find new accommodations with such little notice. By law, facilities are supposed to provide at least a 30-day notice.
In a statement, the owner cited the pandemic’s financial toll as a reason for the sudden shuttering of the facility. The statement did not explain why there was not an effort to provide a more reasonable notice, citing “a domino effect of things out of our control transpired at the end that led to a very heartbreaking and rapid end to the facility.”
In addition to the residents losing their homes, the employees of the facility are losing their jobs and may not even receive a final paycheck.
This terrible scenario may happen with more frequency in the months to come. A report in The 19th highlighted a recent survey by the American Health Care Association and the National Center for Assisted Living which found that only one-quarter of nursing home operators are confident they can keep their doors open for at least one year. “The cost to fight COVID-19, chronic underfunding of Medicaid and the number of patients dropping to record lows have led to the industry’s near collapse,” The 19th reported.
There are no quick fixes to the industry’s woes. It will require a mix of funding, better pay for care workers to address the workforce shortage and better transparency and accountability. In the meantime, if you have a loved one in a nursing home, you should consider putting together an action plan just in case you have to face a similar situation in which the facility suddenly closes.
May has arrived, and with it, a swirl of varied emotions. The world is beginning to open back up, which of course is a good thing. Now that I’m vaccinated against COVID-19, I’m also beginning to venture back out. There’s a strange mix of novelty in doing the most mundane of tasks, but humans are resilient and adaptable and a “new normal” will be established.
There is hope in the air, but May is also a month of loss for me. It will be six years since my mother died, and my beloved cat Nod crossed the Rainbow Bridge last May. Watching the Kentucky Derby yesterday made me think of my mother. Watching the race was the last happy moment we had together.
Many families are experiencing bittersweet reunions with their loved ones who have been isolated in nursing homes during the pandemic. Of course they are thrilled to visit their family members in person, and some can now hug and hold hands with their loved ones. But the toll the past year has taken cannot be denied. This moving New York Times photo essay captures the raw mix of emotions sparked during these long-awaited reunions.
Best wishes to those of you reuniting with your loved ones. If we’ve learned anything over this last year, it’s how precious those moments are and how we can never take them for granted again.
As we face another potential wave of coronavirus cases this fall and winter, this post by Elaine M. Eshbaugh, PhD, on When Dementia Knocks addresses the challenges of caregiving during this unprecedented time with compassion and humility. None of us have all of the answers and we cannot beat ourselves up for making mistakes.
I haven’t given COVID as much attention in my blog as it deserves. I’ve started many posts and abandoned them because they felt inadequate. To be fair, I have gotten a bit of hate the few times I’ve written posts about COVID. Examples: I thought you were smarter than this. COVID isn’t any worse than […]
It’s so important to recognize the signs of abuse in nursing homes and the steps to take if you feel your loved one is being abused in any way. This blog post by The Diary of an Alzheimer’s Caregiver provides a good overview.
Seniors and their families put a great deal of trust in nursing homes. Many of them believe that the decision…
Anyone who has ever spent time in a nursing home, whether as a resident, employee or family member, know how easily communicable diseases and infections can spread in such an environment. This includes everything from the common cold to C. diff. The coronavirus is proving to be no exception.
A nursing home in Washington state is considered to be an epicenter for the coronavirus outbreak in the state and in the country. More than 20 residents have died, half of the current residents have tested positive for coronavirus and over 35 percent of staff did not report to work this week because they exhibited symptoms, The Washington Post reported. Those staff members that do come to work are risking their own health for substandard wages. Their desire to continue providing care for the residents during a national health crisis is admirable, but we must do more to support them.
While younger people may only experience mild symptoms with a coronavirus infection, our elders are most susceptible to experiencing severe symptoms that require hospitalization. As government officials and talking heads argue who is responsible for this country’s handling of the coronavirus outbreak, nursing homes across the country are facing a major challenge and the lives of our elder loved ones are at risk.
It’s no wonder why nursing homes are breeding grounds for such an outbreak. You have a community of older people, many with underlying health conditions that can lead to a weaker immune system. Some may have cognitive challenges that make such simple guidance as “wash your hands” difficult to follow. Nursing homes under normal conditions are typically understaffed. Infection control and cleaning protocols may get overlooked or shortcuts may be taken by harried staff or by the corporate office looking to maximize profit.
The coronavirus outbreak may prompt nursing homes to take actions that will help protect residents from a variety of diseases and infections. The spotlight is on them and they may finally be held accountable for deficiencies in care. (The Department of Justice recently launched a National Nursing Home Initiative that will enhance civil and criminal penalties for nursing home companies who provide substandard care.)
The CDC has prepared guidelines for nursing home staff and management to follow in preparing for coronavirus at their facilities. Some other steps nursing homes are taking to limit infection risk:
Barring most visitors: While this may seem cruel, it is necessary to limit the risk of infection that visitors pose to residents. Facilities are encouraging residents to use technology, such as Skype calls and the FaceTime app to stay in touch with residents. Phone calls are also encouraged.
Limiting or temporary canceling group activities: Limiting the infection risk associated with large gatherings is an important component of infection control.
Increased sanitizing of shared surfaces: Any surfaces or objects used by more than one staff member or resident should receive frequent sanitizing.
For facilities with confirmed coronavirus cases: Additional steps must be taken, including isolating those who test positive, have meals delivered to rooms versus serving meals in a cafeteria setting, and ensuring staff where proper protective gear when interacting with residents.
If you have a loved one in a nursing home, remain vigilant and ask about what plans the facility has in place to address the coronavirus epidemic. Don’t be afraid to speak up and contact your local health officials if you feel that a facility is not providing the level of care it needs to in order to keep residents safe.
And if you know someone who works in a care center, make sure to reach out to them to show how much you appreciate them. Do whatever you can to support them.
I’m always on the lookout for nontraditional elder care options. As we face a growing elder population, we are going to need some out of the box thinking and smart innovation to meet the high demand for elder care and elder-friendly housing.
A recent New York Times article highlighted one such option: continuing care at-home, an offshoot of the more well-known continuing care retirement communities. The NYT refers to the at-home option as a CCRC without walls. The goal is to keep people living comfortably and safely in their homes for as long as possible and for as long as the person desires, but with the option to move into assisted living if needed.
Instead of moving into an independent living apartment on a CCRC campus, people remain at home. Members are assigned a “care navigator” who monitors their health daily living needs. This hybrid aging at home with the option for supportive home care services and residential care could be attractive to baby boomers.
However, there are some downsides. The main one is cost. While the at-home version of the CCRC is cheaper than the traditional format, it’s still requires a hefty entrance fee (typically tens of thousands of dollars) plus monthly fees. In many cases, elders sell their home and move into more affordable housing in order to cover the costs. This is not a financial option for everyone.
There are also medical requirements to enter such programs, with a dementia or Parkinson’s diagnosis, among others being disqualifiers.
So it’s not for everyone, but it could be a good compromise for those who can afford it and want to remain in their homes as long as possible.