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, […]
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.
A caregiver’s job was stressful enough before the coronavirus pandemic struck the world. But now, social isolation and anxiety, along with financial concerns, may feel overwhelming.
Over the last few years, I’ve spent time looking for ways caregivers can find a bit of respite, even if it’s just for an hour or an afternoon. What I learned from my work on Respite Care Share was that many caregivers aren’t seeking traditional respite care, which involves taking a longer physical break away from their loved one. While they would love a caregiving break, they worry about placing their loved one, especially those with dementia, in the care of a stranger while they’re away.
Based upon that feedback, I started focusing more on self-care, and finding realistic ways a caregiver can find some solace even in the midst of caregiving. It may be a cup of tea in the morning before everyone else is awake; it may be sitting in the garden while your loved one naps. Reading a chapter of a book after your loved one goes to bed. Listening to a favorite song while your loved one is occupied with an activity. It may not seem like much, but it can make a positive difference.
These are all things that can also be done during times of self-isolation. Supplements and herbal remedies may be helpful (but check with your doctor first.) On CBD for Caregivers, I published a post about relaxing beverages which are either non-alcoholic or lower in alcohol. The good news is that there are a variety such beverages available now, and many are quite tasty! One of my new favorites is Hella Cocktail Co.’s Bitters & Soda. It’s a nice beverage to sip while sitting outside in the area of the yard I’ve transformed into my respite corner.
Challenging times like these can find us slipping into bad habits like excessive drinking, smoking, overeating, etc. I hope you have or can find a healthier way to navigate these stressful times while keeping you and your family safe.
Honored to have been able to share my caregiving experience that inspired The Reluctant Caregiver included in this collection.
Life these days is turned upside down for most of us, due to the COVID-19 pandemic. There is so much uncertainty, fear, and loss. Those of us caring for loved ones with Alzheimer’s and other dementias find ourselves stressed, not only from our usual pressures but the new ones the virus has delivered: stay-at-home orders…
While coronavirus is claiming so many lives around the world, this week I am mourning a metro Atlanta man, Steve Dezember, who died this week after a 9-year battle with ALS.
I don’t use the term “battle” lightly and am aware of the negative connotation such terminology can engender. But in this case, I believe the term applies. Steve showed courage, grace and humor as he fought back time and time again against all odds. I have followed Steve’s story for years after watching the moving documentary, Hope for Steve.
I’ve also followed the social posts from his wonderful, equally courageous and compassionate wife Hope has shared about the challenging ALS caregiving journey that are so enlightening. I love how she embraced the importance of self-care and wasn’t shy about sharing the difficulties along with the triumphs of being a long-term caregiver. The couple also shared the financial challenges that a disease like ALS creates. Steve made paintings from his wheelchair and Hope also created a variety of art that they used as fundraisers to support his care. A painting of his hangs on the wall of my bedroom.
Following Steve’s journey over the years has made me more appreciative of having good health and in enjoying the simple pleasures of life. It made me admire the sacrifices that spousal caregivers make to tend to their loved ones. And even though this world can seem like a miserable world to be sometimes, watching Steve fight for another day offered an important perspective.
If you have the means, consider donating to an ALS charity in the name of Steve Dezember. Learn more about his journey and share his story. Keep his lovely wife Hope in your thoughts and prayers.
I hope you and your loved ones are staying safe during this challenging time.