We finally had infrastructure week in which President Biden’s infrastructure plan was unveiled to the public. One area of the ambitious plan has some people raising their eyebrows: “Solidify the infrastructure of our care economy.”
Traditionally infrastructure has referred to maintaining roads and bridges, along with other transit-oriented projects like airports and ports. Infrastructure is also often used to refer to essential services like water supply systems and power grids. All of these things are addressed in Biden’s plan. On the surface, caregiving may seem unrelated to how we typically define infrastructure. But make no mistake that care is just as essential to our wellbeing as the roads we use to travel and the electricity we use to power our homes.
As this editorial by Ai-Jen Poo and Heather McCullouch points out, we need to invest in the “systems of support for human capital” so that we can help people get back to work and revive the economy post-pandemic. Just as our roads need repair, so does the way we support citizens who are caring for family members. Biden’s plan focuses on the expansion of home and community care services, which is long overdue. So many caregivers are struggling right now, and the COVID-19 pandemic has demonstrated the need for additional support. Expanding services like childcare, elder care and care for those with disabilities would not only create new jobs, but would help family caregivers get back to work themselves.
Like most people, I want my taxpayer dollars to be spent in an efficient manner on essential programs. In my opinion, caregiving is just as essential as clean drinking water, electricity and roads. Our population, much like our physical infrastructure, is aging and in need of support. Care advocates like Poo have long championed viewing caregiving as an essential sector of the economy that deserves investment. I couldn’t agree more.
This week, I had to say goodbye to my rescue dog, Magee. I cared for him just shy of two years. They were challenging but rewarding years. He had been abandoned by his former owners at a boarding facility so his past was unknown, but he had health issues that were difficult to identify. We made great strides in securing a diagnosis (leishmaniasis) and just beginning treatment for this rare (in the U.S.) parasitic condition when out of the blue, cancer struck. A very aggressive tumor began growing on his eyelid, and in just weeks, was bulging across half his lower eye, bleeding and causing him great discomfort. It was confirmed to be melanoma. Removing the eye was an option, but melanoma, especially as aggressive as this was, typically comes back soon.
Putting a dog like Magee through major surgery and the required aftercare would not have been a good quality of life for him, as he had an anxiety behavior in which he would attack himself when he became stressed out. After his last vet visit, he experienced one of the worst episodes I’ve seen since I adopted him. This behavior continued over the ensuing days. (He had been on various medications to address his anxiety but none had worked well.) To put him through so much stress to buy a short amount of time before the cancer likely came raging back … it was an extremely difficult choice but I opted not to let his suffering continue.
I thought about my father, and how his dementia made him a poor candidate for recovery from surgery. He couldn’t understand that he needed to eat even if he wasn’t hungry to regain his strength and that he needed to follow the instructions of the physical therapist to get safely out of bed and walk. Instead he wasted away and became bedridden. My mother had a slow, grueling recovery from her cancer surgery, only to have it come back about a year and a half later. As caregivers know, rarely does a major procedure go off without a hitch. In my mother’s case the complications (blood clots) were life-threatening and required multiple medical interventions.
As I champion for people, quality of life is important for pets as well. It’s tricky because animals tend to be willing to put up with a lot more than people are, and our pets seem to focus on the happy moments. Dogs especially would live with us forever if they could. They trust us with all of their heart to make the right decision for them and we have to trust ourselves in the same way.
I never expected to have to say goodbye to two pets during this most difficult of years. Before Magee’s passing, I had began a new writing project, collecting the various things I’ve written about the pets I’ve had and my experience fostering dogs. Being a caregiver for animals can be just as intense as it is with humans, and I want to share my experience with those who also are grieving the loss of their beloved pets and agonizing over the medical care choices they made for them. What we see on social media, the smiling photos and the happy updates, are just one part of the story. Caring for a pet with health issues can be exhausting, frustrating, and depressing. It can also be rewarding and teach us valuable life lessons. If we could love ourselves the way our dogs love us, the world would be a better place.
Over a half-million deaths later, Americans may finally be ready to have more frank discussions about death. It is long overdue, and it pains me that it took a deadly pandemic to raise awareness, but perhaps it can be an important legacy of those who we’ve lost over the last year.
I’ve long championed the need to have “the talk” with elder loved ones, and how my parents’ refusal to discuss their end-of-life wishes created unintended but very real consequences. You can read more about my challenges in my collection of personal essays, The Reluctant Caregiver.
The pandemic showed us what many of us don’t want for our deaths: to be alone with no loved ones present, to be hooked up to machines, to die in a hospital instead of at home, to not be given a proper funeral or farewell ceremony. Hopefully we will take time to reflect upon these tragic, lonely deaths and take action now to better articulate what we would like the final phase of our life to look like.
Some may want to consider a death doula. Practically speaking, death doulas are helpers in all aspects of end-of-life care, from the bodily aspects of the dying process to spiritual concerns. They can assist with logistical issues, such as whether a client would prefer to die at home or in a hospice facility, and help coordinate burial and funeral plans. Doulas can serve as a comforting presence for both the dying and their grieving family. While it may seem awkward to bring in a stranger to what is considered a private family affair, having a compassionate, but clear-eyed presence can be a great benefit in an emotionally-charged setting. To learn more about this option, the International End of Life Doula Association offers a Doula Directory.
If you have not done so already, I hope you will take this time to think about how you’d like your end-of-life care to look and document those wishes. Encourage your loved ones to do the same. The coronavirus pandemic denied many the opportunity for a “good” death but by being more open in discussing a previously taboo subject, we can hopefully move towards a better end-of-life experience for all.
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, […]
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.
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.
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.
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.
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.