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.
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.
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.
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.
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.
As we face another potential wave of coronavirus cases this fall and winter, this post by Elaine M. Eshbaugh, PhD, on When Dementia Knocks addresses the challenges of caregiving during this unprecedented time with compassion and humility. None of us have all of the answers and we cannot beat ourselves up for making mistakes.
I haven’t given COVID as much attention in my blog as it deserves. I’ve started many posts and abandoned them because they felt inadequate. To be fair, I have gotten a bit of hate the few times I’ve written posts about COVID. Examples: I thought you were smarter than this. COVID isn’t any worse than […]
I recently was interviewed for a new caregiving project called Open Caregiving. The website serves as a collection for caregivers to share their experiences and offer advice to other caregivers. I was happy to participate.
One of the pieces of advice I offered that proved to be a key for me in thinking about my father’s dementia was to learn how to accept the “new normal.” While it is natural to lament what your life was like before, who your loved one with dementia was before the disease changed them, it is not helpful to be consumed with the past. Cherish those memories and try to focus on the present.
This was very hard for my mother and I to do as my father’s Alzheimer’s disease progressed further. My mother couldn’t help but correct all of the mistaken memories or gibberish that came out of my father’s mouth and I felt shame and embarrassment for my father’s state of mind. I knew how mortified he would be if he could see himself in that state of mental decline. I discuss this further in my book, The Reluctant Caregiver.
But what helped once my father was in the memory care center was simply to visit him and enjoy his company in that moment. If that meant getting him a cup of coffee or navigating him around the outdoor area for a stroll, then that was enough. I would no longer be able to discuss politics or sports with my father but I could still hold his hand and tell him I loved him.
I hope you are finding ways to adjust to the new normal as you wind your way through your own journey as a dementia caregiver.
I connected with this post on many levels. I am an only child as the author is and I often think about how various diseases, especially dementia, would challenge my fierce independent streak. There is such a valuable lesson here for those who are encountering the early stages of dementia and dementia caregivers.
When I was in my 20’s, I spent a lot of time volunteering for hospice. One of my first hospice patients was a woman in her 60’s who had dementia. Her son lived with her, but he needed a weekly respite. I was told she was active and liked to go for walks. In fact, […]