How America’s opioid crisis punishes those with chronic pain

There is a new miniseries on Hulu called “Dopesick” that explores the origins of the opioid epidemic that continues to devastate America. The actions of the Sackler family and Purdue Pharma in the marketing of their supposed “miraculous” pain medication Oxycontin, which they claimed was non-addictive, is generating a great deal of outrage on social media. Legal wrangling over a proposed settlement continues to play out in court.

There is another group who is expressing outrage: those who suffer from chronic pain conditions. I learned a lot about how brutal and devastating intractable pain can be by watching my mother die of cancer. The last several months of her life were torture because new laws designed to curb opioid usage made it difficult for my mother to procure the level of pain medication she needed. While health experts are quick to point out that the laws weren’t meant to target terminal cancer patients, my mother is proof that in fact they did. First was the burden of having to come into the office and see the doctor instead of being able to request a refill over the phone. Then there was the reduction in the amount prescribed and finally a battle in getting an opioid prescription filled at all. Her doctor mistakenly thought my mother wasn’t dying, but just addicted to opioids. When I tried to follow up, I was also treated with doubt and suspicion. The final battle came with trying to get my mother enrolled in hospice, so she could get access to the morphine that she so desperately needed. My mother only received morphine for about two weeks before she died, and I never felt like I was able to get her pain under control because it had been left unchecked for so long.

Unfortunately the addiction epidemic unleashed by Oxycontin has impacted those who actually need such pain medication to function. Beyond terminal conditions like cancer, there are incurable conditions that cause excruciating pain. Ehlers-Danlos syndromes (EDS) is one such condition, which affects the joints and can cause nerve pain and dislocations among other excruciating symptoms. These victims of the opioid epidemic are often forgotten or made to feel like they are addicts for wanting access to effective treatment. They get told to try acupuncture or yoga, or change their diet, or try cannabis, etc. Most of these people have tried a variety of treatments and are frustrated that because of the addiction stigma, they are being denied access to what was the only treatment that worked for them.

Because of my mother’s experience with pain, I have compassion for and am not dismissive of those who are living with conditions that cause extreme pain. The medical community needs to do better to provide effective pain relief for those who truly need it.

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Setting the record straight on Medicare

Expanding Medicare services is a hotly debated topic in Congress right now, as Democrats try to reach an agreement on what parts of President Biden’s Build Back Better agenda can garner enough votes to ensure passage. There is a lot of misinformation flying about that suggests many people, even legislators, don’t understand what Medicare covers. Nancy Pelosi complained in a closed door meeting that she didn’t see why she should receive $1,000 to “get her teeth fixed” and this editorial in The Washington Post bemoaned the idea that Bill Gates might be able to get a free pair of eyeglasses. There is a push by centrist and elitist Democrats to focus on childcare and maybe throw elders a bone by allowing Medicare to negotiate prescription drug prices.

These dubious examples do nothing to address the genuine, dire circumstances that many elders in the middle class and lower middle class experience on a daily basis. I know because my parents experienced it and in turn, my finances were damaged as well. Many people assume Medicare is like Medicaid for those over 65 and covers most medical services. What a rude awakening it can be for a family caregiver to discover that this is definitely not the case. The realization hits particular hard for those people who are deemed to be “too wealthy” for Medicaid, which covers much more. The amount of out-of-pocket expenses for middle-class Medicare recipients can have a crippling impact on a family’s budget.

I’ve discussed on this blog how those with dementia endure significant expenses that Medicare doesn’t cover, including memory care and home health care visits. Middle class families cannot afford to pay several thousand dollars a month for memory care or home health care for very long, especially if they are sandwich caregivers also raising children at the same time.

There is a lot of pushback from dentists about expanding Medicare to cover dental services. So far, I’ve not heard a single dentist discount the importance of dental care for the elder population. It all comes down to them making less money. Issues like gum disease increases the risk of serious health issues. Being able to properly chew food can assist with digestion that slows down as one ages and also supports proper nutrition. If your mouth hurts, you are unlikely to eat properly and eat healthier food like raw fruit and vegetables.

Vision services are more than a pair of glasses. Vision care includes glaucoma screenings and maintaining adequate vision is essential to keep elders from falling or being involved in car accidents which can lead to lengthy hospital stays. Hearing is another important health marker. Loss of hearing has been associated with a higher risk of dementia. These are not optional or cosmetic services but essential preventative care that will keep our elder population healthier at home.

My mother spent thousands of dollars out of pocket for dental care over the years she was on Medicare. This was on top of the several thousand dollars we paid for my father’s memory care. We also paid out of pocket for medical transport services, which is covered by Medicaid, but not Medicare. We burned through my father’s modest savings and then my mother’s savings. I ran up tens of thousands of dollars in credit card debt that I just finally paid off last month, thanks to my ability to refinance my home. I know my family was fortunate in many ways, and that many people have it much worse.

I will always advocate for essential preventative medical care to be covered for elders. Those who mock the importance of such care are out of touch with what middle class and lower middle class families face when trying to manage the health needs of their elder loved ones. The excuses about lack of funds and leaving future generations with debt don’t hold water because when push comes to shove, average Americans make great sacrifices to take care of their loved ones. We do it because it’s the right thing to do, even when it destroys our future financial health and our children’s opportunities. It’s long overdue for the government to have the same level of commitment to its citizens.

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Rural America hit hard by latest COVID-19 wave

When the pandemic first took hold in America, the bulk of cases were in urban areas, like New York City. I remember at the time reading some opinions from those in rural areas of the country, who thought that being a spread out population would protect them from the coronavirus. While that may have protected them somewhat during the early period of the pandemic, the trend have now reversed, with rural areas of the country being overwhelmed by an influx of COVID-19 cases.

Vaccine hesitancy and the political influence of anti-vaxxers and covid deniers in rural America is playing a role in the rise of cases from the delta variant, but that is not the whole story. What we are witnessing are the critical deficiencies in the rural healthcare system. People are dying needlessly because there is not enough space, supplies and staffing to care for them. With the country’s elder population increasing over the next decades, this is an issue that needs prompt attention.

I witnessed the challenges facing those needing medical care in rural areas when I was a caregiver for my parents. There were no memory care facilities with available beds nearby, so my father was transferred to Roswell, over an hour and a half away. This placed a huge burden on my mother when trying to visit him, as she didn’t drive and had to take a bus to make the trip. She was so tired after one grueling trip that she fell in the middle of the night and broke her shoulder. When my father became critically ill, he was transferred all the way to Albuquerque, a three-hour trip from where my parents lived. He died without family present, as my mother was preparing to visit him.

When my mother became ill, the local hospital was unable to perform her surgery, so they transferred her to Roswell. She spent the summer there, recuperating from surgery at a skilled nursing facility. Instead of making the trip back and forth to my parents’ home in Ruidoso, I lived out of a hotel in Roswell for that summer, a pricey endeavor but I learned how important it was for me to be a hands-on caregiver advocate for my mother during that recovery period. Her follow-up care had to be carefully arranged once she got back home, because the oncologists only visited Ruidoso a few days a month. After she died, I learned that the oncologist group discontinued serving the area, forcing those with cancer to travel an hour and a half away for treatment.

Many rural hospitals have closed. Equipment and beds are limited. It’s difficult to recruit doctors and nurses to serve in rural areas. Ambulance services have also been impacted, meaning people die because they can’t get to a hospital fast enough. Specialty services and tests often require lengthy travel, a burden for many families. You can see how these issues create a perfect storm when a pandemic strikes. Many rural healthcare systems now find themselves at the breaking point.

People should be able to age in place where they wish, but they should also be aware of the challenges in aging in a rural area. It will take a mix of public and private funds along with innovative minds to fix the issues plaguing the rural healthcare system, but it is essential and we must take the hard lessons learned during these times to advocate for change.

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Sharing our stories as family caregivers

When we are actively caregiving, it can sometimes feel as no one cares or no one understands what we are going through. As a former family caregiver, I now dedicate my time to not only telling my caregiving story, but learning about other caregiver’s journeys. This week I was blessed with two opportunities to share my story.

I’m a proud member of AlzAuthors, and this week I am the featured guest on the group’s excellent podcast series, Untangling Alzheimer’s & Dementia. If you are looking for a support as a caregiver, I encourage you to check out the podcast as well as the bookstore which offers books about dementia covering a wide range of topics and genres. I’m honored to have my book, The Reluctant Caregiver, included in this collection.

I also did an interview that is featured on Bella’s Blog, part of the Joe & Bella’s retail website. The company describes itself as “a one-stop shopping site for older adults and those who care for them.” The store sells everything from adaptive clothing to safety and mobility items and bathing supplies, all thoughtfully curated by aging and caregiving experts. The first of my two-part interview was posted this week. I discuss the details surrounding my father’s dementia journey and how it impacted the entire family. Use the discount code “Joy” to get 10% off your first purchase at Joe & Bella.

It’s important that family caregivers hear stories from others who have gone through a similar situation. It helps one feel less isolated and can help empower those who are struggling. I’m always grateful to share my caregiving story, but the most rewarding part for me is connecting with others through their own caregiving experiences. We have so much to learn from each other.

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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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