Category Archives: Awareness & Activism

Power of animals to offer brief respite for caregivers

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I visited a local cat cafe for my birthday, and it’s a nice way to spend an hour surrounded by cats with a good cup of coffee. It made me think about how spending time with animals offers the harried family caregiver a convenient, affordable respite from the drudgery and stress of daily duties.

I’m always on the lookout for ways caregivers can slip away for an hour or two and recharge, while their loved one is at adult day care or being cared for by someone else.

For those who love cats, watching them can be relaxing and entertaining. Just observing a cat sleeping is calming, and kittens offer plenty of entertaining hijinks during play time. Petting a purring cat has been shown to have a calming effect.

Dog lovers can visit animal shelters or rescue organizations. Many times, volunteers are needed to walk dogs or just socialize with dogs waiting for a forever home.

Owning a pet may be overwhelming if you are a caregiver, so these options allow you to still connect with the joy animals offer without adding to your workload.

Another thing I love to do is visit butterfly habitats. I found that to be such a soothing, surreal experience, walking through an area filled with fluttering butterflies.

Some may have zoos or other wildlife retreats near them that they enjoy visiting.

Anything that gets you outside of your head for a brief period of time, and focused on something delightful is a worthwhile respite. (It would be nice if caregivers could enjoy a week-long getaway of their choice, but we know that’s difficult to do in many cases.)

We also know that animals can have a positive impact on those with dementia and other diseases. I remember visiting a cat cafe in Montreal, and the daughter had brought her mother, who appeared to have dementia. They both enjoyed their visit.

For more respite care resources, visit Respite Care Share.

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Envoy America expanding operations, offering safe rides for seniors

If you’ve read my blog for any length of time, you know one of my biggest concerns is transportation options for seniors. The ability to get safely to appointments and run errands can mean the difference between independent living and assisted living. If we as a society are embracing the concept of living at home until we die, we need to address these issues.

Uber, Lyft and other rideshare services have been a godsend for me, who otherwise uses public transportation to get around Atlanta. But using these services requires downloading a smartphone app, and not every older person has such a device or is interested in learning how to use one.

While Medicaid covers transportation expenses for medical appointments, Medicare does not, leaving middle class families like mine scrambling to make transportation arrangements. When I was my mother’s caregiver, it was one of my biggest challenges. My mother also had a difficult commute to visit my father in the memory care center. More safe, trustworthy transit options are needed.

Envoy America has expanded to the Houston area, after starting operations in Arizona in 2015. The door-to-door transit service, targeted to the older population, offers features like waiting with a person at a doctor’s appointment, and multiple stops.  They’ll also push the cart and get hard-to-reach items at the grocery store. Drivers receive background checks and are specially-trained to work with older clients, including those with memory issues.

The rides aren’t necessarily cheap, but they do offer many more amenities. The service essentially combines a ride share company with a personal care aide. Envoy America charges by the hour instead of distance. In Houston, the average rate is $40 per hour, according to KHOU.

Envoy America has partnered with organizations like the American Cancer Society, the Mayo Clinic and religious organizations.

My Mom would have loved such a service!

The company is expanding gradually which makes sense, and it may be a long time, if ever, that rural populations are served. I hope the concept catches on, because I think there’s a huge, underserved market waiting for just such a service.

 

 

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‘Fragile Storm’ a short film that delivers a powerful message

 

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Image courtesy of Fragile Storm.

If you have not watched the short film, “Fragile Storm,” I highly encourage you to do so.

The film stars Lance Henriksen and is winning awards at film festivals.

I do not want to give anything away, other than to say push through the first half and stick it out through the ending. It’s a powerful, visceral experience.

It’s free to watch online.

If you get a chance to watch, I’d love to hear what you thought about it in the comments below.

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‘Driving Miss Norma’ teaches valuable lessons on aging, caregiving, dying

I haven’t been shy about my professed loved and admiration for “Miss Norma” Bauerschmidt, who at 90, became an internet sensation when, instead of undergoing grueling treatment for uterine cancer while dealing with the recent death of her husband, she told her doctor, “I’m hitting the road.”

Driving Miss Norma: One Family’s Journey Saying “Yes” to Living, a book about the final, amazing year of Norma’s life, is now available, and I highly recommend it.

Norma joined her son and daughter-in-law in a motor home for an epic trip around the U.S., where she was welcomed like a celebrity everywhere she stopped. While Norma’s symptoms were managed quite well on the road, her cancer progressed and she died on September 30, 2016.

Her story has touched millions around the world, and I couldn’t be happier about that.

Norma’s story touches upon many topics that are near and dear to my heart. First, the “treatment without question” mentality that pervades the American health care system got turned on its head here. The doctor was taken aback by Norma’s reaction at first, but admitted that his own treatment recommendation would have set up Norma on a long road of recovery that she may not have survived. Instead of spending months in a skilled nursing facility recovering from major surgery and being sick from chemotherapy, Norma chose quality over quantity for the remainder of her life.

The highs and lows of caregiving are poignantly and honestly discussed in this book. Norma’s son and daughter-in-law don’t shy away from the challenges that family caregiving poses, which are only complicated when mixed with an unpredictable life on the road. Norma’s son and daughter-in-law weren’t experienced caregivers before taking on Norma, and their “nomadic by choice” lifestyle had to be adapted to Norma’s abilities and health challenges. Ultimately it was an experience that they wouldn’t trade for all the world, but I appreciate their openness in discussing their caregiving experience.

What was most surprising to me was how, according to her son, Norma was not known as the “wild gal” that we saw on Facebook who would make funny faces for the camera or who took delight in quirky tourist spots. Norma, a quiet, stable presence in the family, had been content to live in her husband’s shadow. But once on the road, a new side of Norma emerged. This may be the most important lesson of all in the book. It is never too late to find oneself.

By late summer, it became apparent that Norma’s trip through this life would be coming to a close soon. Being on the road presented some unique challenges, but Norma passed on as comfortably as is possible, surrounded by love and fulfilled in a year’s worth of joyous sights and experiences. For everyone seeking that elusive “good death,” I think after reading this book you will conclude that Norma had a good one.

Obviously, not all of us have adult children who could accommodate such an epic life’s end journey. What we can take from the book is that when faced with what could have been an overwhelmingly depressing moment in her life, coping with the death of her husband and a cancer diagnosis, Norma chose to embrace optimism. Norma chose adventure, to let go of any old grievances and open her heart to new people and experiences. One of the catchphrases for Norma’s journey is, “Say yes to living.”

That’s a lesson we could all take to heart.

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Heat waves a hot topic when caring for older loved ones

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Photo by komgrit/Morguefile

Whether or not you believe in global warming, every year there are deadly heat waves across the U.S. Many of those who succumb to the heat are seniors. Some cities have annual initiatives to make sure low-income seniors have fans in their homes and some cities offer cooling centers, air-conditioned venues that are open during the day free of charge for people who want to escape the heat.

No one should die from the heat because they can’t afford a fan, air conditioning, or are afraid of running up their electricity bills on a fixed budget. But a HealthCentral article I read by Carol Bursack pointed out another reason that is not often discussed.

Bursack told a story about her mother-in-law, who turned off the air conditioning she had in her condo every day after Bursack would visit and turn it on to a low setting just to keep the air circulating. This was in the middle of a heat wave, and Bursack would discover every window shut, the A/C turned off and it would be sweltering inside. When she discovered her mother-in-law suffering serious disorientation symptoms from the heat, she knew her days of independent living were coming to an end.

Bursack’s story reminded me of my mother. In her case, it was the heat during winter. My parents retired to a mountain town that usually receives a decent amount of snow and the temperatures often drop into the 20s and 30s overnight in the winter. Mom would insist on turning off the heat every night before going to bed, then getting up in the middle of the night, shivering, to turn it back on for a few minutes, then turning it off again until the morning. This was totally nuts to me. Mom thought she was saving energy (and perhaps Bursack’s mother thought the same thing) but keeping a home at a steady, moderate temperature is most efficient. So yes, by all means, turn down the heat when you will be bundled under the covers overnight, but don’t turn it off!

Mom also insisted, even on the most frigid of nights, in leaving the windows in the living room and bedrooms open a crack, because she thought she’d suffocate or die of carbon monoxide poisoning if she closed everything. Of course, this caused the furnace to have to work more and threw the whole energy-efficient argument out the window.

As a caregiver, I had to pick my battles. I never convinced Mom to close the windows, but by using a bit of reverse psychology, one night, she mentioned that it might be nice to just keep the heat on through the night, and I told her that was an excellent idea. From then on, she didn’t turn off the heat overnight.

The point here is that even if your elder loved one has access to fans or air conditioning, check to make sure they are actually using them. Whether they are just set in their ways or are beginning to develop dementia, we cannot take the use of such things for granted.

[Addendum: Just after I wrote this post, I went to stay at what was my parents’ condo for 2 weeks. The condo doesn’t have air conditioning, because it’s located in a mountain town where the average temperature this time of year is around 80. Not this year … it’s been in the 90s and hit 93 yesterday. I’m dealing with a summer cold on top of the heat, with only fans to offer relief, and it’s pretty miserable. I’ll be fine, but I’m 42. In 20-30 years, this situation might be more of a health risk.]

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Don’t miss “Care,” a powerful documentary about home care

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Courtesy of Care.

A frustrated caregiver recently posted on social media: “We need more than awareness, we need action.”

I totally agree, and while raising awareness of conditions like Alzheimer’s and the sacrifices that family caregivers make is important to push these issues into the mainstream, at some point, messages of support are not enough. Action, from community involvement all the way to federal funding is essential to truly make a difference.

That’s why I’m excited about a new documentary, Care, that examines the hard, often thankless and definitely underpaid work that home-based caregivers perform and offers a call to action on how we can better support these caregivers and families. Caring Across Generations is hosting screenings across the country.  In addition to in-person screenings, the documentary will become available via streaming options later this year.

The documentary profiles caregivers from different ethnic backgrounds and from different regions of the U.S., spotlighting challenges but also providing a testament as to why some people feel called to provide care to those in need. The documentary doesn’t shy away from the harsh realities of caregiving, showing in detail the difficult physical and emotional work involved. Family members discuss the difficulties of caring for someone at home and those receiving care talk about the loss of independence that often accompanies disease and aging.

For anyone in the metro Atlanta area, I will be participating in a Care screening and panel discussion at Amy’s Place in Roswell on June 7 starting at 6:30 p.m. As I’ve mentioned before, Amy’s Place is a memory care cafe that hosts wonderful community events for those with dementia and their caregivers.

MORE INFO: CARE poster_Roswell Screening

Caring Across Generations is also looking for people just like you, current and former caregivers, who are willing to share their stories. If interested, you can reach out to me via email at joyjohnston.writer@gmail.com.

Check out the trailer below:

 

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‘Senior ER’ designed to reduce stress for dementia patients

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Photo by Kenn W. Kiser

One of the most frightening calls I received when Dad was in memory care was that he had been taken to the emergency room. Unfortunately, I received several similar calls over the course of the year Dad was in residential care.

The emergency room visits were usually prompted by falls. Even if Dad seemed OK, regulations required the memory care staff to send Dad to the hospital to be checked out. The worst part was that no staff member accompanied Dad. I can’t imagine the confusion Dad must have experienced, on top of his dementia, with the chaos that accompanies an emergency room visit.

Even for a person without dementia, the emergency room is a daunting experience. I’ve only been to the ER  once as a patient, in high school, and it was an exhausting, fruitless experience. I’ve been to the ER several times with others having medical issues, and it is always a nightmarish experience. Why do medical emergencies seem to always happen in the middle of the night? Really though, it doesn’t matter if it is high noon, emergency rooms and hospitals in general seem to be caught in a time warp where it always feels like it’s 3 a.m.

There is so much hurry up and wait. People rushing in and out. Poking, prodding, medications being shoved in your face, or pumped into a vein. So many questions that have to be answered rapidly, and repeatedly. It’s enough to rattle a mentally sound person.

That’s why I am optimistic that some hospitals are reinventing the ER experience for those with dementia. Lutheran Medical Center in Denver was recently profiled for its Senior ER program. They’ve taken half of their emergency room space and retrofitted it to make it a more soothing, less chaotic experience. Everything from mattress thickness to lighting and noise level has been moderated to prevent the onset of delirium, which can hasten death.

The Senior ER has been such a success that people of all ages are asking to be admitted to that wing.

 

 

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