In the essay, Sarah Romanelli describes a situation that will be familiar to many caregivers: “being held hostage” by a broken care system that breaks down as one becomes more fragile. In Romanelli’s grandmother case, she was too weak for rehab and too dependent to return to assisted living, who sent her back to the hospital. The family was forced to crunch numbers and develop a care plan, which involved at-home care.
The family moved the grandmother to an apartment close to family and hired 24-hour care. That cost a whopping $16,200 per month, but was still cheaper than securing a space in a long-term care facility. Keep in mind that care facilities may require families to pay out-of-pocket for private caregivers if a resident is deemed to need around-the-clock monitoring. This happens quite often for residents with dementia.
Romanelli says her grandmother received wonderful end-of-life care, but she knows that their family’s solution is not feasible for most people. My father also got passed around to various facilities and ended up being sent far away from my mother, because it was the only memory care facility with an opening. At over $4,000 a month, it quickly depleted my family’s modest resources. But 24-hour care would not have been feasible in my parents’ rural community due to staffing shortages, and definitely would have been more expensive.
Bottom line, no matter what care option you choose, it will be expensive. I want people to have the choice of dying at home, and not bankrupt their family in the process.
In a move that family caregivers feel is long overdue, the federal government is launching an investigation into the inappropriate use of antipsychotic drugs in nursing homes. Specifically, the government will be looking at the suspicious rise in schizophrenia cases and determine if the spike is being used as a workaround to use antipsychotic drugs to sedate difficult patients and make them more manageable for staff.
This is not a new issue, especially for family caregivers of those with dementia. I’ve written about it multiple times on this blog in relation to my father’s experience. My father was given risperidone, a drug used to treat schizophrenia and bipolar disease, at the memory care facility he resided in during the last year of his life. The doctor didn’t deny when I confronted him about the drug and how it was used to make dementia patients zombies and more compliant for staff.
After my father’s death, I reported the issue to the appropriate state agency, but never received a response. The federal government claimed in 2013 that antipsychotic use in nursing homes was on the decline. That remains true but only for the population not diagnosed with schizophrenia. There is also a troubling racial disparity, with Black nursing home residents being diagnosed with schizophrenia at higher rates than their white counterparts.
CMS will conduct audits and nursing homes showing a pattern of diagnosing schizophrenia incorrectly may see their public ratings impacted. CMS will monitor the nursing homes not in compliance to make sure corrections are implemented. It’s not known at this time if fines will be implemented for those nursing homes who continue to be out of compliance. Also, patients’ families will not be informed if their loved one was incorrectly diagnosed. Make sure to request a list of the drugs your loved one has been prescribed and question any medications that don’t seem appropriate.
Highlighting the challenges that come with caring for a family member in which you have a difficult relationship dynamic is an issue that is important to me. I discuss my own challenges when caring for my mother in my book, The Reluctant Caregiver.
Lori Grinker has created a moving, powerful photo essay, “All the Little Things,” which is about caring for her mother Audrey. The mother and daughter faced a trifecta of challenges: Audrey was already dealing with dementia when she was diagnosed with cancer at the beginning of the COVID-19 pandemic. Grinker and her mother had always had a strained relationship, but the pandemic delayed a move into an assisted living facility, so mother and daughter lived together for three months. Grinker not only captures images of her mother, but of objects in her mother’s apartment. Those objects sparked memories and discussions that allowed the pair to open up the lines of communication more.
One of the objects that jumped out at me was the worn baking sheet. I remember my mother having a similar favorite baking sheet that she never wanted to discard no matter how discolored it became.
Life isn’t a Hallmark movie, so one shouldn’t expect an “all is forgiven” ending. Grinker told NPR that she and her mother were able to find some love for each other and most importantly, Grinker says she no longer harbors anger for her mother’s actions. She told NPR even if she cannot forgive her mother for some things, she now understands some of her mother’s life choices better.
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 […]