NYT report shines light on dangerous drugging of nursing home residents

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.

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20 years after 9/11

It’s hard to believe that it has been 20 years since the 9/11 terrorist attacks.

I remember my father being particularly saddened by the scenes of destruction in New York City, the first place he called home when he arrived in America. My father had a passion for global affairs, especially those where repressed people were uprising. He wrote many letters to the editor over the years, discussing political affairs not only in his homeland of Northern Ireland but in Africa and the Middle East. He was an avid reader of large tomes on military policy and strategy. I wish I’d had deeper discussions with my father about world events. One of the worst aspects of dementia for my father was losing the ability to read, his favorite hobby.

I hope you’ll have time today to reflect and spend time with loved ones.

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Home sharing: Learn more about this elder housing option

You are never too old to have a roommate, or in the concept of home sharing, a housemate. It’s not a new concept. Popular TV shows like “The Golden Girls” put home sharing in the national spotlight and the arrangement continues to spark interest among elders looking for alternative housing options. With more single elders wanting to age in place while on fixed budgets, home sharing could be a viable solution.

Home sharing comes in many different forms. In some cases, an elder opens up their privately-owned home to another elder who is seeking housing. In some cases, home sharing could involve a tiny home on the property or a part of the main house which has been retrofitted into an apartment or separate dwelling. This is a good solution for those who want to maintain a higher level of privacy. In other cases, home sharing may involve larger multi-resident dwellings, where each person had their own room but share common areas. Home sharing organizations can help applicants find the right housing situation for them along with a vetted, compatible housemate match.

It’s important to remember that home sharing is not a substitute for those who require daily medical care. Housemates are not allowed to perform medical care for liability reasons, but can help with household tasks such as cooking and cleaning for a reduction in rent. Home sharing organizations draw up contracts that outline housemate expectations in great detail to support a successful arrangement.

Annamarie Pluhar, author of “Sharing Housing, A Guidebook for Finding and Keeping Good Housemates,” identified five essential benefits to sharing a home, especially for older people:

  • Cost
  • Companionship
  • Help and security
  • Health and well-being
  • Sustainability

Some people in home sharing arrangements have said that the mental and emotional benefits of companionship ended up outweighing the financial benefits. For independent older adults who are not interested in traditional retirement communities, home sharing is a an option worth exploring.

Learn more at StayorMove.org and SharingHousing, Inc.

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How to address elder abuse of family caregivers

While elder abuse is an important issue we must better address as a society, there is less open discussion about elders who abuse their family caregivers. But it is a real issue, with potentially devastating physical, mental, and emotional consequences for the caregiver. A mix of embarrassment, shame, and reluctance allows this issue to be kept hidden. But it is important for caregivers to share their stories and seek help when necessary.

I cam across a helpful article on this topic written by Carol Bradley Bursack of Minding Our Elders. She tells of a time when she faced nasty treatment from her mother when Bursack visited her at the nursing home where she resided. A nurse offered sage advice: skip a day of visitation. A day of respite offered Bursack the break she didn’t even realize she needed and helped clear the air with her mother, who was very pleasant on her next visit.

This made me think of a similar example from my own caregiving experience and how I handled it. As I write about extensively in my book, The Reluctant Caregiver, my mother and I were like oil and water together. We had opposite personalities and our differences only magnified as my mother dealt with a grueling recovery from cancer surgery and I became her live-in caregiver. I became responsible for managing her colostomy, which always involved some trial and error. When she developed a hernia, my mother’s discomfort yet decision to delay the necessary surgery only made her mood more foul. In the middle of the night she called out to me, letting me know her ostomy bag was leaking. This was an occasional occurrence and usually my mother was apologetic and grateful for my assistance. But not that night. She berated me, telling me I didn’t know what I was doing over and over. This despite the fact that she would not learn how to change the bag herself, which was the main reason I remained her live-in caregiver. I got the bag changed, walked away as she continued to yell at me, and went to my bedroom. I was angrier than I had ever been in my life. Rage shook my body. I knew I needed a break, and soon.

Respite care in a rural community is hard to come by, but fortunately, there was a resort hotel within short walking distance of my mother’s condo. I made a reservation online for the next night. The next morning, I was polite but cool to my mother, who tried to pretend nothing had happened. I told her I was spending the night at a hotel, and that it was the best thing for both of us. She put up a bit of fight but I could tell she knew she had crossed a line. I walked out that afternoon with zero regrets. If my mother had a medical need, she could call me and I would’ve been there in 10 minutes, so she was in no danger. My emotional well-being was in danger. I so enjoyed that night in the hotel. I got a good night’s sleep for the first time in months and felt refreshed and in a better state of mind upon returning to my mother’s place. While we still had our disagreements, she never again treated me the way she did that night. There are regrets I have about my mother’s care, but the decision I made that night to care for myself—I have no regrets at all.

Here are some tips on what to do if you are facing an abusive situation involving an elder relative:

  • Confide in a trusted source: Talk to someone about what you are facing. Ideally, it will be someone outside of your family unit, such as a friend, support group member, therapist, or pastor. Online forums can provide instant feedback. Sometimes we become so deeply involved in caregiving we get tunnel vision and have a hard time acknowledging the realities of the situation. We often want to make excuses for our loved ones who are abusive, but having a trusted sounding board can help you identify if you are in an abusive situation that needs outside assistance.
  • Set boundaries: It is easy to allow yourself to be taken advantage of by those you care for, out of guilt or sense of duty. But it is important to carve out time for your needs, otherwise you will suffer caregiver burnout. Elders who desire to age in place will need to understand that you will not be able to wait on them 24/7, and outside help may be necessary to attend to their needs. For elders in nursing homes, they should be encouraged to develop social relationships with fellow residents and staff instead of relying upon daily visits from a relative, which may be a burden for those juggling a job and childcare duties. If the abuse becomes overwhelming, it may require an extended separation.
  • Use respite care: If respite care is offered in your area, take advantage of those services! If not, seek options for informal respite care. This could be a friend, relative, church member, etc. who is willing and capable to spend time with your loved one while you take the afternoon or evening off to tend to your own needs. Even a few hours of respite, if taken regularly, can make a big difference.

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Nursing home worker vaccine requirement met with mixed reaction

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

diverse perspectives:

  • 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.

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A lesson on how grief impacts our memories of traumatic events

The 20th anniversary of 9/11 is coming up and there will be many powerful reports, essays, and accounts written to mark the somber occasion. Remarkable pieces have been published over the years about 9/11, such as The Falling Man. An essay published in The Atlantic recently is one of the most well-written and moving accounts I’ve ever read. On the surface it’s about a family’s struggle with losing a loved one on 9/11, but peeling back the layers with both compassion and clarity, Jennifer Senior reveals much more than meets the eye.

One of the more interesting aspects of the essay to me is the impact that trauma and grief have on our memories. It’s a lesson that may serve dementia caregivers well. Getting the details just right may not be as important as how we are able to process past traumatic events in the here and now. Sometimes remembering a specific word is less important than conveying the meaning and emotion of the message.

Another important lesson learned from this family’s heartbreaking experience is that grieving can cause us to act in ways we don’t intend. Communication can become difficult. It’s important to give those who are grieving space to process what they are feeling. Be a compassionate listener. This essay captures in vivid detail just how different the grief process can be for members of the same family.

The 9/11 anniversary is coming at a time when our nation is reeling from the deadly coronavirus pandemic. There are many of us grieving right now. I would encourage all of us to remember that as we go through our daily interactions. A moment of kindness can make a big difference.

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Hospice Training: A Change in Perspective — The Day Between

What a fantastic exercise in developing empathy and understanding of the challenges facing those going through the end of life phase. I believe this training could also be adapted for those caring for those with dementia to better understand how one might feel like they are losing pieces of their identity to the disease.

From a fellow blogger training to be a hospice volunteer:

Yesterday, in a training for upcoming hospice volunteering, I was asked the following: Who are the 4 most important people in your life? What are your 4 most important possessions? What are your 4 top beliefs and/or aspirations in life? What are your favorite 4 activities to do? What are your 4 greatest comforts? I […]

Hospice Training: A Change in Perspective — The Day Between

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Caregiver concerns regarding the delta variant

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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.

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Staff shortages a growing hurdle for home care

Those of us who have utilized home health care for our loved ones are well aware of the staffing challenges in the industry. The pandemic intensified the problem and has moved the issue into the national spotlight. Will we find solutions as the demand for home health care is likely to increase in the coming years?

My father’s journey with Alzheimer’s ended a decade ago. Like the woman interviewed by the New York Times for a recent article on the shortage of home care options, my mother cared for my father at home for as long as she could. Her preference would have been to care for him at home, with adequate outside support. There were sporadic home health care visits to address physical health issues, but the bulk of the care fell on my mother. My father ended up being hospitalized for a medical condition which required surgery and was not physically well enough at the time to be released home. He was placed in a memory care center an hour-and-a-half drive away from my parents’ home. It was the closest facility with an opening. The distance put a huge strain on my mother, who didn’t have personal transportation and had to take a bus to visit my father.

My mother used home health care while she was recovering from cancer, but in her rural community, staffing shortages and high turnover meant limited visits and the bulk of daily care falling on my shoulders. I had to quit my job in order to provide that care, and while I’m grateful I was able to be there for my mother, it created a significant financial burden that I’m still trying to pay off several years after her death.

Most people’s preference is to age in place at home, but people are in for a rude awakening if we don’t adequately address the problems within the industry. While staffing has rebounded to pre-pandemic levels for the most part, demand continues to grow. According to the New York Times, “More than 800,000 older and disabled people who qualify for Medicaid are on state waiting lists for home care.”

That’s a lot of people, and the ripple effect that it causes for family members who have to drastically alter their lives to fill in the care gaps cannot be ignored. There is a lot of talk about “elevating the profession” and that is long overdue. Better pay, better benefits, a career path that offers further training or certifications would help attract and maintain staff. Adjusting our immigration policy to welcome those who want to work in the care industry is another option being discussed. At some point soon, we must move beyond just mere talk and take action.

In the meantime, families are left scrambling and our loved ones in need of care suffer.

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When nursing homes close suddenly, families suffer

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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.

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