Tag Archives: caregiving

Vision for the new year

I hope you had a peaceful holiday season. Mine was spent mourning my beloved cat Rosalie, but the holiday break allowed me time to honor her memory in various ways. Her urn arrived this week, and Katie Patton of Blocks from the Heart has done such a magnificent job in capturing Rosalie’s spirit.

And to usher in the new year, I took the plunge and adopted a pair of tuxedo cats named Dorian and Serena. They are young, just a year and a half. I do feel like Rosalie’s untimely passing was a signal from the universe that an opportunity was presenting itself to welcome a new energy into my home and my life. It was a rude awakening, but one that I hope will inspire new endeavors into my caregiving advocacy work. Adopting young cats is also a good lesson in letting go of routines and looking at things from a new perspective … like when a kitty climbs to the top of the kitchen cabinets!

Serena and Dorian

As for vision … I attend a monthly women’s healing circle that involves a variety of spiritual disciplines and meditations. It’s been a virtual respite during the isolation of the pandemic. Each year, the teacher draws a spirit word for each participant, and mine for 2022 is vision. I’m interested in exploring that concept.

To kick off the year, I’m taking a course in children’s book writing. I have an idea for a children’s book that would feature my rescue dog Murphy’s story and connect it to children who have also experienced trauma. I don’t know what will come of it, but I think it is good to flex the writing muscles in a new direction.

On the legislative front, I hope some of the caregiving initiatives can be salvaged from the BBB plan. I know I sound like a broken record, but caregiving issues deserves bipartisan support because it’s something that touches all of our lives, regardless of political beliefs. Caregivers, from frontline hospital and nursing home workers to family members tending to loved ones at home, have sacrificed so much and it’s well past time that we as a society support better funding so that they get the support they need.

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Reflecting upon 10 years since my father’s death

It has been 10 years since my father’s death. So much has happened in the past decade, but I’ll never forget where I was when my mother called with the worst news of my life, in the middle of the newsroom at the Atlanta Journal-Constitution. I had been waiting for that awful call for quite some time, and some part of me wished for it, because it pained me so much to see my father suffering in the late stages of dementia. But of course there was no immediate sense of relief upon my father’s passing, just sadness and regret.

I do still carry feelings of regret and guilt to this very day, and probably always will. I discuss this at length in The Reluctant Caregiver, and urge others not to judge themselves too harshly. In that spirit, I am taking a look back on what my father inspired me to do over the last decade.

  • I began this blog, The Memories Project. What began as a way to document memories of my father and process my grief has become the foundation of my dementia and caregiver advocacy platform. I have also met so many fellow caregivers through the blog and am grateful for their wisdom and their support.
  • I wrote a book, which was a life goal of mine. My collection of personal essays on family caregiving, The Reluctant Caregiver, won a gold medal at the IPPY Awards. An essay from that collection won the Rick Bragg Prize for Nonfiction from the Atlanta Writers Club. A story I wrote about my father, “French Toast,” was included in the Chicken Soup for the Soul: Living with Alzheimer’s and Other Dementias collection. I know my dad, a lifelong lover of books, would be proud.
  • I finally made it to Ireland and visited my father’s hometown of Belfast, Northern Ireland. This was at the top of my bucket list and has been one of the best experiences of my life.
  • The privilege of sharing my father’s story through a variety of outlets, including NPR, AlzAuthors, Caring Across Generations and the Aging in America conference.

The decade since my father’s death has been the most difficult of my life, but also the most rewarding. I hope that you can take time this holiday season to recognize and reflect upon the highs amidst the lows of your own caregiving journey. Give yourself the grace that you deserve.

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How pandemic helped motivate interest in ‘virtual assisted living’ technology

One aspect of the pandemic that could be seen as a benefit to family caregivers is the embrace and expansion of technology that assists with basic tasks in our daily lives. While some of us were already utilizing such services before the pandemic, many others learned the convenience of having groceries delivered to their home, for example.

A sandwich caregiver interviewed by MarketWatch recounted what a major benefit it was to have groceries delivered. She used to spend a good chunk of her day off taking her elder parents to the grocery store. When the pandemic struck, she shifted to grocery delivery and signed up her own family as well. Sometimes it is the simple things that can make all the difference. A caregiver reclaiming a few hours of her life each week can have a major impact on her wellbeing and those in her care.

Of course, there is always a price to pay for that convenience, and I never forget the fact that there is a human being who is picking out my groceries and delivering them, putting their own lives at risk to complete a chore for me. I always make sure to tip well.

Zoom and other video calling tools also exploded in popularity during the pandemic. While some are understandably suffering from Zoom fatigue at this point, for those families who were able to get their elder loved ones comfortable with the technology, video calls served as an important lifeline for those separated during the pandemic. Being able to check in on an elder loved one from afar with a simple video call helped put a family caregiver’s mind at ease. Of course it’s not the same as being able to hug and socialize in person, but for elders who otherwise may have been completely isolated, video calls kept the connection to family intact.

Remote tools, whether for working, socializing, or caregiving, are now receiving greater public interest, which is sparking investments from major technology companies like Amazon, who has developed a caregiving hub called Alexa Together. While there are security, privacy, and ethical concerns when it comes to monitoring technology, overall I think these tools can be helpful for the long-distance caregiver.

From my experience, I found tools such as a cellphone designed for older people, fall-sensing technology, and automated shipping of supplies to be of great help as a long-distance caregiver. As I wrote in my book, The Reluctant Caregiver, I was able to convince my mother, long skeptical of high-tech gadgets, to embrace these tools to help keep her living at home safely, versus having to enter assisted living.

As I grow older, I will be watching this growing field of technology with interest.

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How your caregiving experience can be a gift to others

My father and Aunt Peggy on her wedding day, 1956.

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.

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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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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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The Story You Are Living Is Bigger Than You Know — Life, Love, and Alzheimer’s

“Right now, you may only feel the weight of its burden rather than the weight of its significance, but one day you will look back and realize everything you have learned from this experience.”

So true, can’t wait to read this book!

The Story You Are Living Is Bigger Than You Know — Life, Love, and Alzheimer’s

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Understanding care as part of infrastructure

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.

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Care issues to receive holistic approach in new administration

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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.

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National Family Caregivers Month: Honor, take action

November is National Family Caregivers Month. This year’s theme announced by the Caregiver Action Network is “Caregiving in Crisis.” It’s an appropriate theme as the coronavirus pandemic has propelled family caregiving into the national spotlight. In 2020, many Americans found themselves as caregivers for the very first time.

This year’s election was dominated by the coronavirus pandemic. The new administration will have its hands full in trying to bring the pandemic under control, while initiating economic reforms to stabilize the economy. Once again, caregivers play a critical role in both areas.

Here are a few high priorities on my caregiver wish list:

  • Increased financial support for family caregivers: With unemployment rates still high due to the pandemic, it is critical that we offer ample funds and other benefits to those family caregivers who are at financial risk. You cannot care for others if you can’t care for yourself first.
  • More affordable health care options: The ACA was a start, but has significant gaps. The haphazard federal response so far to the pandemic has left some people with pricey medical bills. Hospitals are closing in rural areas when medical care is needed the most. If we’ve learned nothing else from 2020, it is that affordable and accessible health care is a critical need.
  • Increased pay, benefits for professional caregivers: Family members cannot do it all on their own. But the caregiver workforce in America is woefully underpaid. We must improve the pay, benefits and educational opportunities for caregivers so we can attract the best people to these jobs which the pandemic has illustrated are of immense importance.
  • Build a modern eldercare infrastructure: Our population will continue to grow older, live longer and the majority of people want to age in their own homes. We’ll need to develop accessible housing, strengthen our home care network and improve elder resources, especially in rural areas, so that people can grow old where they want, but safely and with ample support.

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