We will turn our clocks forward this coming weekend, officially at two a.m. on Sunday, March 14. Of course, no one does it at that precise time. The general practice is just to move clocks ahead an hour when you go to sleep Saturday night, and don’t forget the clock in your vehicle! For most of us, […]Alzheimer’s Insights: Longer days ahead can affect different aspects of our physical and psychological health — L’Observateur
Alzheimer’s Insights: Longer days ahead can affect different aspects of our physical and psychological health — L’Observateur
While always a sobering overview, I believe it is important to review the annual analysis that the Alzheimer’s Association releases.
Some important takeaways:
- More than 6 millions Americans are living with Alzheimer’s
- Over 11 million Americans provide unpaid care for those with Alzheimer’s and other dementias
- 1 in 3 American seniors die with Alzheimer’s or other dementia
- This year, Alzheimer’s and other dementias will cost the nation $355 billion
- The value of the care unpaid Alzheimer’s caregivers provide is $257 billion
One other important statistic to note is the racial disparity in care. Discrimination in the health care setting can prevent or delay people getting the care they need. Half of Black Americans report such discrimination. Over 40 percent of Native Americans reported discrimination. Over a third of Hispanic and Asian Americans reported discrimination. I would also add to this the discrimination that women face in healthcare settings. Discrimination can take many forms, including a doctor not taking complaints of pain as seriously and assuming a symptom is emotional vs. physical in nature. I remember my own mother suffering at the hands of doctors who did not take her cancer pain seriously, instead assuming she was drug seeking.
As caregivers, we must be vocal and tireless advocates when faced with such discrimination. Don’t be afraid to ask for a different doctor if you are uncomfortable or dissatisfied with the care being provided. I’ve read many accounts from adult children who sought treatment for their elder parents with signs of dementia but the doctors shrugged off symptoms as the elder was able to present well for the duration of the appointment. Be persistent. While there is no miracle treatment for Alzheimer’s or other dementias, there are medications and treatments which may help in the earlier stages. That is why receiving a correct and timely diagnosis is crucial.
It’s been a chilly winter for Atlanta (though no snow) and I’ve been hunkering down watching movies. In recent years, there has been an increase in movies about topics that I care about, including caregiving and dementia. Films about growing older that aren’t necessarily tied to illness and death are also being made. Whether you end up giving a thumbs up or a thumbs down to these movies, the mere fact they are being told and finding an audience is a positive sign. There continues to be issues with how older people, especially women, are portrayed in movies and there remains a need to explore growing old from the lens of people of color and other marginalized groups. Below is a list of movies I watched recently that deal with caregiving issues that I found intriguing.
Supernova: Starring Stanley Tucci and Colin Firth, this emotionally riveting drama centers around a same-sex couple grappling with dementia and end-of-life issues. I appreciated the focus on male caregiving, as it is often overlooked in our society but more men are becoming caregivers and their stories deserved to be told. The vulnerability that the actors showed in their roles was laudable.
Nomadland: Frances McDormand gives an award-worthy performance as an older woman named Fern who converts a van into a home and hits the road after her husband dies and the town she had lived and worked in suffers and economic collapse. The film offers an honest, unvarnished look at the life of modern nomads, who live out of vans or RVs. Many of these nomads are older, but continue to work at odd jobs to afford their life on wheels. While the road offers a good deal of freedom, health challenges, financial issues and loneliness are common issues. This is not a road trip adventure movie; it is about an older woman looking to learn who she is after her former life vanishes. Money is tight, the nights are cold and you take jobs wherever you can find them. The road can be unforgiving, but the friendships Fern forms along the way are authentic and offer important lessons.
Some Kind of Heaven: This documentary by Lance Oppenheim is a moving and intimate look at the less festive aspects of life in The Villages, the well-known retirement community in Florida. Those who have ample retirement funds and who are extroverts will likely thrive in the party-like atmosphere, but for those who find themselves alone, grappling with health issues or lacking money, The Villages is not such a fairy tale life. Oppenheim handled this subject matter with an impressive amount of compassion and insight for someone in their mid-twenties making their feature-length documentary debut.
I Care a Lot: This black comedy-thriller is polarizing audiences. Rosamund Pike plays a villain you love to hate but no one comes off as a hero in this film. Pike runs a company who provides guardianships to the elderly who are supposedly no longer able to care for themselves. The only problem is that her clients are all wealthy and not all are in need of guardians. The company is a scam to strip these people of their money while portraying itself as elder advocates in the eyes of the law. While the violent antics depicted the movie are over the top, there are documented cases of court-appointed guardians who do not serve their client’s best interest and who shut out family members who question such moves. Once courts become involved, it can be difficult for families to regain control of their loved one’s assets and care plan.
What are your favorite movies about caregiving? Let me know in the comments section.
As a former resident of Texas, I have closely monitored the widespread power outages caused by winter storms this week. Having experienced the vicious ice storms that can strike North Texas, I am not surprised, but saddened. Texas and the entire southern region of the United States are ill prepared to handle a lengthy, severe winter blast. Governments in these states are reluctant to invest significant money to prepare for a weather event that typically only happens once every several years.
The power is slowly being restored and conditions should begin to improve in Texas. There will be calls to hold officials and utilities accountable, to better winterize the equipment so a catastrophe like this doesn’t happen again. But caregivers need a plan of their own to keep themselves and loved ones safe. If there can be any positives to come of of the crisis in Texas, it is that people will be prompted to think about their own situation and how they would survive if faced with such dire circumstances. Here are some things to consider.
- Stay or evacuate: There are many factors to consider when deciding whether to evacuate before a significant weather event. While most people would rather remain in their homes, a loved one’s medical condition may determine what is the safest approach. Does your loved one need routine medical care, such as dialysis, that is provided at a facility? Hundreds of dialysis clinics lost power and water during the Texas storm and were unable to provide services. Does your loved one receive oxygen or on a machine that requires electricity? Rolling blackouts in Texas left some caregivers in fear of medical equipment failure. If you plan to ride out the storm, do you have the space to stock up on shelf-stable food, medications and medical supplies?
- Power and clean water sources: In Texas, the two main issues are the lack of power, which means people can’t heat their homes, and a lack of clean water, due to frozen pipes and water treatment plant issues. As a caregiver, are you prepared to tackle these problems? Do you have a reliable backup power source like a generator? Do you have ample fuel to run such equipment? If you have a fireplace, do you have enough wood and do you know how to operate it? Do you have a supply of drinking water stored or a clean water source? People are getting creative in Texas, boiling snow to use as a water source but experts warn that this still carries health risks.
- Evacuating after the storm: You’ve probably seen the videos of cars going sideways trying to navigate their neighborhood’s icy streets. Removing snow from walkways and digging out cars is strenuous, and can even trigger heart attacks. Will you be able to evacuate yourself and your loved ones safely if you need to leave after a winter storm strikes? Those living in rural areas may find roads to be impassable, due to heavy snow, ice or fallen trees. Road crews focus on the highways, meaning your neighborhood streets will likely not be treated. Plan your evacuation route ahead of time.
- Reach out for help: Don’t wait until disaster strikes. If you have concerns about how you and the loved ones you care for will fare in a winter storm, address them now. Talk to other family members, neighbors, church members, etc. and make a safety plan. Talk to your loved one’s doctor if you need assistance in coordinated medical care during inclement weather. While one can hope to never have to implement such a plan, having these resources available during a crisis can make all of the difference.
I’ve previously shared on this blog my father’s terrifying experience at the Cecil Hotel back in the 1960s. Over the years, documentary filmmakers have reached out to me, interested in learning more. Last year, I was interviewed for a documentary that premieres Feb. 10 on Netflix. It is called, “Crime Scene: The Vanishing at the Cecil Hotel.”
The documentary focuses on the mysterious death of Canadian tourist Elisa Lam, who was found dead in a water tank atop the Cecil Hotel in 2013. While authorities ruled the death an accidental drowning, there are many questions surrounding her death, amplified by the notorious reputation of the hotel. The four-part series covers many of the high-profile crimes that have taken place at the Cecil.
For those interested in the possible supernatural influence at the Cecil, I’m sharing my father’s terrifying experience. My father lived at the Cecil in 1965. He was a young, single immigrant from Northern Ireland who needed affordable accommodations near his workplace. He had been staying at the Cecil for some time with no unusual incidents to report until one night, he woke up to the sensation that someone was smothering him. He described it as a heavy pressure weighing down on his chest and throat, as if someone was sitting atop him. He gasped for breath and tried to fight back, but it felt like his entire body was paralyzed by an invisible but strong presence. Then as soon as it began, the feeling dissipated. My father ran downstairs to the night clerk, and explained what had happened. The clerk said, nonchalantly, that someone had been murdered in my dad’s room.
My dad changed rooms and did not experience anything unusual during the rest of his stay.
But the experience haunted my father for the rest of his life. Decades later, my father would be visibly shaken when retelling the story of what happened in that room at the Cecil Hotel. He would break out into a sweat, and his hands would shake. My mother would caution him to stop telling the story if it upset him so much, but Dad felt compelled to go on, even while clutching his heart.
My dad survived the Nazis bombing his hometown of Belfast, Northern Ireland as a child. He recounted having to run to the bomb shelter in the middle of the night with less fear than he told the story about that night at the Cecil Hotel.
The logical, rational side of me can dismiss my father’s experience at the Cecil as just a nightmare. He was prone to nightmares, very bad ones in which I remember him moaning and crying out in fear. But the thing about his nightmares is that they were always the classic “someone chasing me” scenario. Never did he have a nightmare that in any way resembled his experience at the Cecil.
There’s no way for me to know if my father had an encounter with an evil presence that haunts the Cecil Hotel or not, but I do know that whatever my father experienced, it felt very real to him.
Read more: Dad’s stay at the haunted Cecil Hotel
When my father stayed at the Cecil, he likely wasn’t aware of its disturbing history. About a dozen suicides had been recorded at the hotel by the mid-1960s, including several women. Pauline Otten, 27, committed suicide in 1962 by jumping out of a window at the Cecil. In a tragic twist, she killed a pedestrian on impact. Just a year before my father’s stay, Goldie Osgood, a retiree known as “Pigeon Goldie” and the “Pigeon Lady of Pershing Square,” was raped and murdered in her room. The coroner said Osgood had been choked to death with a hand towel. The case was never solved, though an initial arrest was made. This Medium post offers a good overview of the deaths associated with the Cecil Hotel.
Unfortunately, the Cecil’s reputation only grew worse. In subsequent decades, it has been home to at least two serial killers, including the infamous Night Stalker. Lam’s mysterious death garnered worldwide interest and once again put the Cecil in the spotlight. The hotel tried to rebrand itself as Stay on Main for a few years and is undergoing yet another transformation but still attracts much attention from paranormal enthusiasts.
The hotel’s sinister history inspired a season of American Horror Story.
If you have interest in the history of the Cecil Hotel and the Elisa Lam case, I encourage you to watch this new documentary and let me know what you think. Many of you have reached out to me over the years to offer your own experiences when visiting the Cecil Hotel and I appreciate your comments.
I spend quite a bit of time on this blog discussing the challenges of delivering health care, and in particular, elder care, in rural regions of America. But I want to highlight a recent success story: West Virginia’s COVID-19 vaccination system.
West Virginia, one of the country’s poorest states and ravaged by the opioid epidemic, seems an unlikely source when it comes to innovations in health care. As of this week, 11 percent of West Virginia’s population has received at least the first dose of the COVID-19 vaccine. In comparison, wealthier states such as Massachusetts and California have only vaccinated 7 percent of their populations. Of course population size has an impact, but considering the bumpy rollout of the vaccine nationally, it’s a fairly impressive feat.
What is the key to West Virginia’s success? Simplicity. The state has opted to manage their vaccine program closely at the state level, instead of delegating the entire complex process to county or city governments like many other states. Vaccine supply is distributed to five hospitals in different areas of the state, which then distribute it to local agencies and medical centers familiar with administering other vaccination programs such as the flu vaccine. They’ve also leaned on the state’s National Guard forces for their logistical expertise.
The centralized approach avoids some of the complications that can arise even with well-meaning collaborations from outside agencies. For example, West Virginia was the only state to opt out of a federal partnership with pharmacy chains Walgreens and CVS that assisted states in getting nursing home residents and workers vaccinated. West Virginia instead utilized the local pharmacies throughout their state and were able to complete the process before many states had even began, according to The Washington Post.
West Virginia isn’t the only success story. Rural communities in other states also have shared their vaccination success stories, many using old school tools like the phone and word of mouth to reach out to residents directly. There is often a collaborative effort in small towns, where everyone from the public health officials to firefighters and librarians willing to jump in and do their part, Reuters reported.
The vaccination effort is leading to a decline in nursing home coronavirus cases, according to health officials.
It’s a good thing these rural communities have found a way to get a jump start on vaccinating their residents, as the lack of medical care resources means those who develop coronavirus may not get the specialized treatment they need in time or have to be moved far out of the area. There is also an increasing worry that issues with vaccination supply may mean rural areas have to wait longer for additional supplies, while urban and suburban areas catch up.
Plan ahead for your elder loved ones who live alone and wish to age in place. You will want to take your time in vetting care workers and finding one that is the right fit. Kay Bransford offers helpful tips on her blog.
Most of the individuals I work with that are still in their home want to stay there. The ongoing COVID issues have made many individuals and their families second guess community care. 472 more wordsFinding a Live-In Arrangement That Works — Dealing with Dementia
I couldn’t help but think about my father this week as Joe Biden was inaugurated. Biden is an Irish-American Catholic who proudly recognizes his Irish ancestry, frequently quoting Irish poets and writers in speeches. I think my father would approve.
My father’s interest in politics began early. He was born into a devout Irish Catholic family in Belfast. Nazi air raids sent him and his family fleeing into bomb shelters in the middle of the night. His initial love of America was due in part to the U.S. military’s role during WWII. He closely followed the violent, deadly developments that took place between nationalists and unionists in his beloved Belfast and surrounding areas during the Troubles. By this time, he had already immigrated to America, which was a good thing, because he alluded on more than one occasion that he may have become directly involved in the unrest if he had remained in Northern Ireland.
As a child, what I remember most about my father’s political beliefs was his adoration of all things Kennedy. He loved to tell the story of how he met a young JFK in New York City. My father was a bellhop at the hotel Kennedy was staying at and he got to shake his hand. He also followed Robert F. Kennedy’s political rise closely and I believed he attended at least one rally in Los Angeles. My father lamented the Kennedy curse that cut short the political aspirations of the two brothers.
My father’s heritage directly influenced his political perspective. He had great disdain for Britain’s control and interference in Northern Ireland, and closely followed other countries who battled for independence from crown rule. His many letters to newspapers reflected a deep political interest in conflicts around the globe. In spite of political turmoil, my father remained devoted to all things Irish, beaming with pride when those of Irish descent were recognized for their talents. As my mother wrote in my father’s obituary, he loved his adopted country and homeland equally. He recognized that the good parts outweighed the challenges. It’s a poignant reminder for me right now, as America struggles through its own cultural and political strife.
The good news is that COVID-19 vaccines have been developed in record time and are being rolled out to the public. The bad news is that the distribution of the vaccines is off to a rocky start.
Front-line health care workers and nursing home residents are supposed to be top priority when it comes to the first phase of vaccine distribution, according to federal officials. The problem is that the coordination and management in distributing the vaccines has been left to local governments, meaning each city/county/state has their own rules on how the public can sign up to get the vaccine. New York City residents report facing a ton of red tape in trying to make an appointment. Some regions have online only appointment systems, which can be a roadblock for those who are not tech savvy. The strict temperature requirements for the vaccines mean that in certain cases, places open up vaccinations to anyone, in order to avoid having to discard spoiled doses. The chaos that has ensued and the lack of efficient communication at the local level has left some elders to contact their local media outlets for assistance in setting up a vaccine appointment.
In short, it’s a mess. I do have some hope that more stable leadership at the federal level will help iron out the vaccination rollout. Getting the pandemic under control will be the top priority, and there should be a greater willingness to partner with local governments to support the success of their vaccination programs. This truly needs to be a group effort. The more effective the vaccination program is, the quicker people can return to the lives they cherish, including spending time with family and supporting the businesses in their community.
So if you are an elder or an elder caregiver, where do you begin? Start with your family physician, who can confirm which vaccine phase group you are in, and offer a general timeline on when you may be eligible to receive the vaccine. Next, reach out to your local health department. Policy & Medicine offers this state-by-state list of local health department resources. Be patient, as websites and hotlines are overwhelmed right now. As the vaccine stockpile grows, there will be more places that will offer the vaccine, including pharmacy chain stores like CVS. Finally, don’t skip the second (booster) shot! It is necessary for the vaccines currently available to the public. I’ve seen several news reports of a steep decline in the rate of people returning to get their second vaccine dose. While a single dose will offer some protection, two doses are necessary for the most effective protection. Johnson & Johnson is working on a single dose vaccine, which hopefully will gain approval soon.
If you or your loved one has received the vaccine, please comment below about your experience.
There are no adequate words to describe what America has experienced over the past week. But it is important to not lose sight that a new administration will be sworn in later this month, and while they will have their hands full with dealing with the aftermath of an attempted violent overthrow of our government and a raging pandemic, there is optimism that the Biden-Harris administration recognizes the need for a comprehensive plan to address caregiving issues. Joe Biden has been a caregiver, so he understands the issue at a personal level. Kamala Harris supported domestic workers’ issues while serving in the Senate. With a slim Democratic majority in both houses, there is a greater chance that some of these initiatives will become law. Let’s take a brief look at how the Biden-Harris administration wants to address caregiving issues. The complete Biden-Harris caregiving plan is available online.
- Holistic approach: Care needs across the age spectrum will not be separated but addressed in a holistic fashion. Many families members are a member of the “sandwich generation,” caring for children and for aging relatives at the same time. There has long been a greater focus on childcare in this country in comparison to aging issues and I hope this imbalance will be corrected.
- Building infrastructure of care: Biden’s plan is designed to address shortcomings in many areas of caregiving by reforming certain programs and launching new initiatives. For aging care, this would include providing more support for aging in place services, in part by reforming Medicaid and reducing the wait list and by establishing a fund to pay for home care and community care. Biden would seek to increase the caregiver workforce by offering better pay and basic benefits such as health care and paid leave. Tax credits and social security credits for caregivers would also be considered. Veterans and people of color would receive special attention to address past inequities.
- Public health jobs corps: I’m particularly interested in the formation of a public health jobs corps. While it first would assist with the COVID-19 pandemic, eventually the corps would be used to support community health programs. A public health corps that served rural areas could be huge in allowing aging loved ones to safely stay in their homes.
- How much will it cost? The ambitious plan has a hefty price tag of $775 billion over a decade. While elements of the plan, like caregiver tax credits, may receive bipartisan support, there will be plenty of pushback from fiscal conservatives on other components of the plan. While I support taxpayer dollars being utilized in an efficient, prudent manner, I also think that caring for its citizens should be a top priority of any country.