I hope that you are having a wonderful holiday weekend with loved ones and appreciating the simple joys of being together, something that many had to sacrifice over the last two years.
Black Friday has earned a sordid reputation as displaying the worst of consumerism, but there is another notable day happening soon that may be worthy of participation: Giving Tuesday. If you have nonprofits and charities that you donate to or volunteer with, you probably are aware of the upcoming Nov. 30th event.
Giving Tuesday is a relatively new movement, beginning in 2012 as a way to simply designate a day to encourage people to do good. The movement has now spread globally. It’s easy to participate, and giving support to our elder community is one of the movement’s areas of focus. It can be as simple as checking in on a neighbor, writing a letter to an elder in a nursing home, supporting a local fundraiser, or donating your time and skills virtually or in-person.
Whether it’s Tuesday or any other day this holiday season, let’s find our own unique way to support the elders in our families and communities.
A new AARP survey found that older Americans continue to have a strong preference to staying in their homes as they age, even if they have found themselves stuck at home for long stretches of time during the COVID-19 pandemic. Over three-quarters of those age 50 and over (77 percent) prefer to remain in their home as they age, according to the survey results. That statistic has remained steady for over a decade, according to AARP.
However, there is another way in which older people get stuck in a living situation that doesn’t meet their needs as they age. A third of survey participants said they’d need to modify their homes in order to accommodate a physical limitation. These modifications can be pricey and not feasible for those on fixed incomes. The same financial challenges apply to moving into a more aging-friendly home or moving into a senior living facility.
When my father landed in the hospital for emergency surgery, he had a difficult recovery due to his mid-stage dementia and could no longer walk. The condo that my parents had was not safe for him to return to, so the hospital would not release him home. One had to access a staircase to get to the entrance and the rear entrance was wooded land that was not safe for unsteady gaits. Any modifications would have to be approved by the HOA, a lengthy process. Instead my father got transferred to a skilled nursing facility and then, a memory care facility an hour and a half away from home.
Another solution to these housing challenges was met with support from survey participants. Sixty percent of those polled said they would consider living in an accessory dwelling unit (ADU), sometimes referred to as a “granny pad” or a tiny house. These affordable, small-footprint homes can be built adjacent to a primary home (depending upon local permitting) and allow independence and privacy while also benefitting from having loved ones nearby for help with daily chores and activities and for companionship.
According to the AARP survey, “access to clean water, healthy foods, quality health care and safe outdoor spaces” were important considerations when it came to what communities offer those aging in place. High-speed internet service was also deemed important. Developers and city planners should take note as they build communities and offer flexible, adjustable housing options that can meet the needs of an aging population.
As many of you know, I am a member of the AlzAuthors group, which has grown over the years to include a diverse and impressive membership. I love how the AlzAuthors library represents so many varied genres, from memoirs to self-help to children’s books. We have non-fiction and fiction books that focus on Alzheimer’s and other dementias. We have books for those living with dementia and books for their caregivers and other family members, such as grandchildren. Much gratitude to the organization’s leadership, who have tirelessly worked to encourage the group to grow in membership and outreach.
In honor of Caregiver Appreciation Month, AlzAuthors is hosting a book sale and giveaway. The promotion runs through Nov. 17. It’s a good time to stock up on books that are heavily discounted, some even offered for free. These books can make thoughtful gift ideas for the caregiver in your life.
You can get the digital version of my award-winning collection of personal essays, The Reluctant Caregiver, for just 99 cents.
Please share the giveaway information with fellow caregivers.
I received a letter from my Uncle Jim this week, updating me on how my Aunt Peggy is doing. She is my father’s youngest sister and has dementia. My father’s side of the family has been decimated by the disease and Peggy has been living with the disease for years. Jim has been an amazing caregiver to her and patient in navigating the choppy waves the disease presents. She is doing as well as can be expected, and is able to take advantage of resources offered by Australia’s stellar healthcare system.
A few years ago, I sent Jim a copy of Chicken Soup for the Soul: Living with Alzheimer’s and other Dementias. A story of mine about my father, French Toast, is included in the collection, but I also thought Jim might appreciate the wealth of information that was shared by the dozens of dementia caregivers who contributed to the collection. In his recent letter, he mentioned the book and the information I shared about my father’s struggles with swallowing in the end stage of the disease. He thanked me for sharing the information and how it had been helpful while caring for Peggy.
Caregiving can feel very isolating. When caring for someone with dementia, that isolation can feel even greater, as friends and sometimes even other family members maintain a distance, not sure how to help or struggling to accept the diagnosis. But in those moments you might be learning something that, when shared with others, can make their caregiving lives easier.
Don’t be afraid to share the lessons you have learned on your caregiving journey. Knowledge is a precious gift and what we learn from fellow caregivers can be more meaningful than what we learn in books.
For those who celebrate, I hope Halloween festivities offer you a bit of respite from what has been another challenging year. I have many fond memories of Halloween, and appreciate my mother’s efforts in making it special for me as a child. If your health permits, indulge in a piece of candy or sweet treat. It’s amazing what a simple gesture can do for the spirit.
But I cannot let this weekend go by without mentioning how disappointed I am that paid leave has not made the cut so far in the painfully negotiated Build Back Better bill that has paralyzed Congress over the last couple of months. While I’m relieved that home care will receive new funding, America is one of the only countries in the world that does not have some form of paid leave. It’s popular according to surveys, yet moderates are more concerned about the effect on small businesses and the country’s debt, instead of the major sacrifices of individual citizens. In my book, The Reluctant Caregiver, I outline the devastating financial costs that I suffered when as an only child, I found myself being a caregiver for my parents. Six years after my mother’s death, I’ve finally paid off my credit card debt, but I’m hopelessly behind in retirement savings.
The truth is that caregivers who end up in massive personal debt have a negative impact upon the country’s financial stability. Bankruptcies, foreclosures, and credit default can lead to higher interest rates for all, along with tightening mortgage eligibility. Either way, we’re going to have to pay. And that is just the financial cost. Those who do not have access to paid leave often suffer from more health issues, placing a burden on our healthcare system. Being proactive makes more sense than just shrugging one’s shoulders and shirking one’s responsibility to provide practical solutions for fellow citizens.
I am heartened to see so many caregivers sharing their personal caregiving stories. We are no longer an invisible workforce, and we must hold those accountable who continue to ignore the issue.
Most of us think we have more time than we actually do … So many times, after my mom passed, I wished I’d asked her about this person or that event. – Stacy Monson
So true! The Memories Project began as a way to honor my father and the further I went in documenting my father’s stories, the more I realized I was missing important details. That is why I urge everyone to ask your loved ones to recount their life stories and anything else they want to share. It’s so easy now, literally a tap on a smartphone button, and you can record these precious memories.
Read the blog post along with a great list of questions to get you started by clicking the link below:
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.
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.
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.
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.