“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
Tag Archives: caregiving
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 […]Dementia Caregiving and COVID — When Dementia Knocks
Good tips! Establishing boundaries as a family caregiver is so important. The initial resistance you may face can help you avoid caregiver burnout down the road.
Read the entire post on What to Do about Mama?
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.
If you would like to share your caregiving story, fill out this form.
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, […]
This blog post written by Elaine M. Eshbaugh, PhD, has such a good message for all of us right now, especially caregivers. It is so true that you must learn to “let go” when dealing with dementia. Those of us who have been dementia caregivers have navigated our ways through “new normals” before. Stay safe and don’t be too hard on yourself.
So what’s your personal 2020 theme? (Can you answer this question without using a four-letter word that would’ve gotten you in trouble at recess?) You’ve got your personal and family challenges, which likely include dementia since you are reading my blog. You’ve got whatever chaos is happening in your community. Maybe people are arguing about […]
This is a great list from We Are Dementia Strong. Basically it boils down to treating your loved one with dementia like the person you’ve known, not solely by their dementia. This disease tries to strip people of their humanity and its caregivers’ duty to try and maintain dignity whenever possible.
Some other friends just may find it too hard to see me like I am. I didn’t like seeing my Grandfather or my Mother while they were on their Alzheimer’s Journey so, I understand.