June 4, 2017 · 3:25 pm

Is dying at home best for everyone?

bed

Photo by Lillian Nelson/Freeimages

In recent years, a growing movement has embraced the concept of dying at home, versus a hospital or nursing home. In general, I support the idea, after my father had a difficult death in a skilled nursing facility while I was 1,300 miles away. But having experienced the challenges of being a primary caregiver for my mother, who died at home, I also understand just how traumatic such a death can be for family members. The latter is a viewpoint that is not often discussed.

Ann Brenoff, who covers aging topics for Huffington Post, interviewed me last week to discuss the potential consequences for the family caregiver when a loved one chooses to die at home. The article, When Loved Ones Die At Home, Family Caregivers Pay The Price, offers an important perspective on the subject. The article references my 2015 essay, Why dying at home is not all it’s cracked up to be. Brenoff discusses how financial concerns are behind the government’s desire for people to die at home. While it’s cheaper for people to die at home, caregivers pay the ultimate price.

In many cases, family caregivers shoulder the burden of care duties. Some have to quit their jobs or reduce work hours, impacting their financial status. Chronic stress can affect their own health. The emotional toll can be devastating.

To achieve a good death at home standard, we must offer greater support to family caregivers.

There are pros and cons to everything, including dying at home. The more we learn about each other’s caregiving experiences, the better informed we will be when we face a family health crisis or end-of-life care situation.

 

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May 28, 2017 · 11:50 am

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

care poster custom

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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May 21, 2017 · 11:01 am

Marking 2 years since Mom died

Mom school

It’s hard to believe it has been two years since my mother died. The world seems like such a different place, even though two years is but a speck over the course of history.

While merely coincidence, Mom’s death seemed to send the universe into a chaotic spiral. I feel like I’m living in perpetual survival mode, just like I did when I was a caregiver.  Mom’s eternal optimism would have been sorely tested over the last year or so.

The grief is less oppressive and not as constant at this point, but it continues to lurk in the dark alleys of my mind, popping out like a villain in a movie from time to time. The “should’ve, would’ve, could’ve” mantra hasn’t been silenced quite yet, but I’ve been able to turn down the volume on the second-guessing for the most part.

Just like in this photo of Mom, I will spend the day writing. She always loved this photo, which appeared in the yearbook. Mom took her education seriously, which wasn’t always a given for farm families when crops could trump classes. I inherited a similar love of learning from both of my parents, which is a precious gift that I use every day.

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May 14, 2017 · 9:22 am

Thinking of Mom

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Mom and I at the library, before taking a stroll through the park.

Happy Mother’s Day to all of the wonderful, patient and loving mothers out there, both living and departed.

Even though it is easy to roll one’s eyes at this “Hallmark holiday,” it is a good opportunity to remember those who have cared for you and those you love. Mothering comes in many forms, from traditional to caregiving to caring for pets. A simple thank you, a sympathetic ear, a helping hand, all of these go a long way to honoring the mother(-s) in your lives.

Mother’s Day is extra difficult for me because once I get past today, the anniversary of my mom’s death looms on May 21. It’s a double gut-punch of a month now.

I’ll remember Mom today by doing some birdwatching in the backyard (our birdfeeder has become quite the hotspot) and taking a walk to appreciate other wonders of nature that my mother loved. One of Mom’s best qualities was always “stopping to smell the roses.” She appreciated every flower, every bird, all of nature’s offerings. It’s a good reminder for me to take time to enjoy nature as well and seek a healthier balance between work and other demands of modern life.

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May 7, 2017 · 10:30 pm

‘Senior ER’ designed to reduce stress for dementia patients

emergency room

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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April 30, 2017 · 1:13 pm

Caregiving model could be good for all

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Innovative social integration programs that pair retirement home residents with university students are growing in popularity. Students get free or reduced rate housing and meals, and seniors enjoy the health benefits of socializing with younger generations. They also share life stories and experiences, an invaluable perk of the program.

A program sponsored by USC’s gerontology school and a Los Angeles retirement home was spotlighted in a recent STAT article. The program has been around for 30 years, so there has been plenty of time to collect data on how the program has benefited elder residents and medical school students.

There’s a practical reason for the program from the school’s point of view: it’s difficult to attract candidates to the geriatrics specialty. Lower pay and the lack of “sexy” factor are a couple of reasons why it’s a challenge to recruit young doctors to the field of gerontology.

The program sounds like a success, and the colorful anecdotes from residents and students make it a delightful read. One remark in particular caught my eye. A student who had been through the program said one of the benefits was that senior residents would share more things about their health than in a 20-minute doctor’s appointment. “It’s kind of like being an undercover police officer,” the medical student said.

Another medical student said of the USC program that you don’t really think about the challenges older people deal with until you experience it with them in daily life.

In a social and political environment that is so polarizing, we could all benefit from programs that push us out of our comfort zones and encourage us to have a conversation with those from different generations, races, cultures, etc. So many of us are living inside bubbles, but we have much to learn from each other, even if we cannot relate to or agree on every issue. (The new Heineken ad, “Worlds Apart,” also captures this sentiment, even if it is a bit of a contrived experiment.)

I hope these programs continue to grow in popularity. Sounds like a win-win for society.

 

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April 24, 2017 · 9:44 pm

Beware of scams targeting older people’s homes

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Photo: Aaron Murphy/Freeimages

I’ve read multiple articles recently about scams targeting older people, especially those who are in poor health and who are struggling financially. Criminals are getting savvy, implementing complex schemes to steal one of the most precious possessions: one’ s home.

Aging in place is a popular concept nowadays, but there are many older people struggling to stay in their homes. The housing market crash and economic instability has left older generations struggling to hang on to the place they’ve called home for most of their lives. This makes them vulnerable to scam artists, who set up phony agencies and organizations that pretend to help people keep their homes. As one aging immigrant learned, he had actually signed his home away to strangers.

Those in the early stages of dementia are no doubt prime targets for such scams. That’s why it’s so important to stay involved with your aging relatives’ lives, even if you don’t live near them. Call them regularly, or write letters, but keep an open line of communication. If something seems amiss, it probably is, and should be investigated.

Mom managed the family finances, which was a relief as Dad developed dementia, because we didn’t have to worry about taking away the checkbook from him.  After Dad died and as she was recovering from cancer, I was concerned about Mom getting sucked into some kind of scam, because she loved to talk to people and was generally a trusting person. By that point, I was helping Mom pay bills and routinely monitored for any anomalies. Thankfully, there were none.

I can’t imagine how terrible it must feel to be in your 70s or 80s, in poor health, and receive an eviction notice for a home you owned for decades. The old adage, “if it sounds too good to be true, it probably is,” applies now more than ever. Preventing such predatory transactions is key, because it can be difficult to fight in court once the paperwork is signed. Stay vigilant in protecting your aging loved one’s assets.

 

 

 

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April 18, 2017 · 8:36 pm

A Sad Good Bye To An Amazing Woman Shifting Dementia Care and Cure

This is such sad news, and quite a shock, as her death was sudden. Trish was a very active advocate for those with Alzheimer’s and their families. Her legacy will live on and her dedication is an inspiration to all of us.

Alzheimer's Speaks's avatarAlzheimer's Speaks Blog

A Sad Good Bye To An Amazing Woman Shifting Dementia Care and Cure

trish V usagainst alz head shot (2)

Trish Vradenburg

May Trish’s  family and friends feel the love and support the world is sending them

Trish’s Deep-Rooted and Unflinching Passion to Fight Alzheimer’s Creates Admirable and Aspirational Legacy

UsAgainstAlzheimer’s Co-Founder and Vice-Chair Trish Vradenburg’s unflinching spirit – her creativity and imagination, quick-witted humor, empathy, generosity and her exceptional tenacity to stop the suffering of others – was captured in her every action. It is with immense sadness that UsAgainstAlzheimer’s announces her passing, and it is with the utmost gratitude that the organization cherishes her legacy and forges ahead in her memory.

Trish’s life was an inspiring portrait of creativity and versatility, employing her gifts of writing and storytelling throughout a successful professional career. She began her career as a speechwriter in the U.S. Senate. She wrote for various television shows, including Designing Women, Family Ties…

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April 12, 2017 · 7:58 am

Missing the milestones

dad-easter

My dad would have turned 85 on Monday. It’s been several years now since his death, and the milestones are starting to become less likely to imagine.

My father has one sister who has lived into her 80s, but most of his family died in their 70s or younger. His immediate family survived the brutalities of WWII so they’re a hardy bunch for sure. Dad made it to 79, and was just 4 months shy of his 80th birthday.

But it’s difficult to imagine my dad at 85. A smoker since his teens, who was diagnosed with COPD and emphysema, those conditions would likely have taken a great toll on him by now, and perhaps he’d be tied to an oxygen machine. He definitely would have hated that. And would he have become so frail as to need a wheelchair? That’s another thing he would’ve loathed. The man loved to walk in a long, fast, striding gait. This was a major problem when he developed dementia, because of his tendency to wander.

So all in all, I’m at peace with the fact that Dad’s not around to be an octogenarian. If I’ve learned anything over the last several years, life isn’t about reaching a certain age but the quality of your day-to-day living.

Since Dad’s birthday is close to Easter this year, I thought it was appropriate to include the one Easter photo I have of us together.

 

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April 4, 2017 · 8:00 am

Book review: Fractured Memories by Emily Page

fractured memories

I’ve been following artist and family caregiver Emily Page’s blog, The Perks of Being an Artist, for quite some time now. Her blog documents her father’s battle with frontotemporal dementia (FTD) and her experiences as a younger caregiver as well as being a place for her to share the amazing art she creates.

Page often injects humor into her musings, which I appreciate as she documents the difficulty of the dementia caregiving experience, which I could relate to all too well. I was sad to hear of her father’s passing, but also understood the sense that he was free from such a cruel disease.

Page has written a book about her family’s experience with dementia, titled, Fractured Memories. [Also available on Amazon.] In it, you’ll learn her family’s story, why her father was so special to her, and heartfelt journal entries that document the highs and lows of family caregiving. You’ll also get to view selections of Emily’s artwork, and why the symbol of the elephant is so important.

I highly recommend the book, especially to those who are or who have gone through the dementia experience with a loved one. There are many things caregivers will be able to relate to in the book, from the difficulties in managing those with dementia at home, to the frustration of the sometimes poor care received at expensive memory care facilities. Page accurately documents the range of wild emotions one experiences as a family caregiver to someone with dementia. Of course, everyone’s journey has unique situations, but I think most dementia caregivers will nod in sympathy with the experiences of the Page family.

While there are heartbreaking moments, there is quite a bit of humor, and most importantly, the love Page has for her father shines throughout the book. I love the symbolism of the elephant and how Page was able to use her artistic talent to express various stages of disease and caregiving. I hope you’ll consider reading Fractured Memories and recommending it to other dementia caregivers.

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