Tag Archives: caregivers

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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My top takeaways from the Aging in America conference

Respite Care Share AIA 2017

I’ve been at the Aging in America conference all week and it has been sobering and inspiring to be surrounded by so many smart, compassionate, and determined people. There are many battles to fight when it comes to issues surrounding aging and caregiving, but we have an army of advocates ready to fight for those who have been ignored by society and by government for too long.

There were recurring themes that came up at every session I attended. Here are some of the main areas of concern:

  • Health care: While it may be a political issue to those in Congress and to some voters, for those who work with seniors, the disabled, and the poor, health insurance is truly a do or die decision. The concerns about the current administration and the Republican’s proposed ACA repeal plan were explained through data and powerful anecdotal evidence. However you may feel about the ACA, and certainly it is not perfect, with some people hit with skyrocketing premiums and limited choice, there were millions of people who were able to get the treatment they desperately needed, mainly because of the ACA’s expansion of Medicaid. Don’t think you’ll need Medicaid? As one expert put it, with long-term care so expensive and not covered by Medicare, many of us will end up on Medicaid at some point, if we live long enough.
  • Diversity: While diversity can sometimes be an empty buzzword, I found that the attendees of the Aging in America conference take diversity issues very seriously. From how a doctor discusses Alzheimer’s care to a Latino family versus a Caucasian family to senior housing that welcomes the LGBT community, our aging policy must reflect the diversity of our country.
  • Help for caregivers: The issue that I’m most passionate about was also a major topic of discussion at the conference. There are many individuals and organizations dedicated to offering relief to caregivers, in the form of grants and other financial assistance, better training and support, and through respite care. I received positive feedback about my Respite Care Share concept, and I hope through the networking made at the conference, I can help take the concept to the next level.

The conference wraps up Friday, and I hope that the brainstorming that took place in Chicago this week will lead to positive impact in your communities.

 

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A new year, sparked by old memories

nye

Many people use the new year to try and wipe the old slate clean, and create a new version of themselves that’s thinner or stronger or smarter. There’s nothing wrong with working out more, eating more broccoli and fewer doughnuts and resisting  vices. But what I’ve found in my 40-plus years is that the goals are less important than the journey we take each year on our life’s path.

Caregivers, former and present, understand that life can turn south at a moment’s notice, no matter what the calendar reads, and temporarily disrupt goals, dreams and projects. A “new normal” emerges, and it may not look like what one hoped for at the beginning of a new year. After my father died at the end of 2011, I thought there was a new beginning for my mom and myself, one in which every moment wasn’t spent worrying about my father’s well-being. But just six months later, Mom fell ill and wow, was I ever in for a change. I have no idea what my 2012 resolutions were, but they sure didn’t involve being a caregiver!

So I don’t make resolutions anymore, but I do have goals, which I’m all too aware are subject to change. I’m nearing the completion of my collection of caregiving essays, and I will be working on a prototype for my Respite Care Share concept, which will be presented at the Aging in America Conference in March. These things will keep me occupied for the year, and I’m sure other opportunities will come along the way. New opportunities, but tied to memories of my parents, their lives, the illnesses they battled, and their deaths. While the sharp turn in my life path in 2012 made no sense to me at the time, it got me to this place, where in 2017, I can hopefully give back a bit to the caregiving community.

There is much trepidation about 2017, even though for many, there is a great relief 2016 is coming to a close. Caregivers are survivors, a hardy bunch who push through and find a way to make it another day. Maybe 2017 is the year others will learn the value of caregivers in our society.

I wish you and your family a happy and healthy new year.

 

 

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A visit to Amy’s Place

I finally had the pleasure of visiting Amy’s Place, a memory care cafe in metro Atlanta. Amy’s Place was selected by Atlanta magazine as a 2016 Groundbreakers finalist. This year the theme was how to make Atlanta a better place to grow old.

Amy’s Place certainly fulfills that mission. The charming home is open free of charge to people with dementia and their caregivers. It is designed as a place to visit and relax. Two adorable dachshunds bring wail-tagging joy to visitors, and caregivers can utilize a fully-stocked kitchen and shower while their loved ones receive attention and supervision from staff. Amy’s Place also offers caregiver support groups and fun social events, like painting classes.

I had a chance to meet co-founder Pam Van Ahn at the holiday party held at Amy’s Place last week. She and her sister Jean opened Amy’s Place earlier this year and are receiving rave reviews from the caregiving community. The memory cafe is part of their nonprofit, Caring Together in Hope.

The more I learn of programs like this, the more hope I have that we as regular citizens can make a difference in the lives of those with dementia and just as importantly, their caregivers. If you know of programs in your area that are designed to help caregivers, let me know in the comments section. I’m working on putting together a list of resources for my own Respite Care Share project.

 

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Marking National Family Caregivers Month

mom-joy

I learned a lot about caregiving from my mother.

Before November slips away, I want to recognize that this is National Family Caregivers Month. I love this year’s theme: “Take Care to Give Care.” Supporting family caregivers is something I believe strongly in, and I am grateful I have the opportunity to give back.

My development of the Respite Care Share concept continues, and I’m working on the poster presentation that will take place at the 2017 Aging in America conference. Along the way, I’ve met many dedicated family caregiver advocates. We have a long ways to go, but as with most things, a grassroots-level, community-based approach will generate quicker results than waiting for government action.

The Caregiver Action Network offers good tips for family caregivers on managing their own health.

  • Stress: Family caregivers often face a tremendous amount of stress, yet ignore their own mental and physical health. I was certainly guilty of this when I was a caregiver. It’s important to take steps to minimize and manage stress, and promptly address any health issues that arise.
  • Healthy lifestyle: It’s easy to throw out healthy habits like a nutritious diet and regular exercise when you are overwhelmed with family caregiving duties. But a poor diet and sedentary lifestyle can make one feel sluggish, and more vulnerable to experiencing health consequences from stress. There was a walking trail adjacent to my mother’s condo, so I went almost daily for walks, which helped relieve stress.
  • “Rest. Recharge. Respite.” I love this mantra from the Caregiver Action Network. My sleep was disrupted every day when I was caregiving for my mother, and there was no way to avoid that (leaking colostomy bags always seem to occur at 3 a.m. and will not wait!), but I tried to make sure I got a set amount of hours of sleep each day. I did take breaks when Mom was stable enough, and that really helped.

A big thank you to all of the family caregivers out there, who are facing another hectic holiday season. There are many people focused on providing greater support for family caregivers, so don’t give up hope.

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Book review: Simply Happy

I had the privilege of receiving an advance copy of simply-happy-cover
Simply Happy
, a different kind of Chicken Soup for the Soul book. This time, publisher Amy Newmark has written an entire book herself, based upon the wisdom she has gained from reading all of the inspirational submissions over the years.

As you may remember, I was honored to have my first-ever Chicken Soup for the Soul submission, French Toast, accepted and published in Chicken Soup for the Soul: Living with Alzheimer’s and Other Dementias, which benefitted the Alzheimer’s Association.

I was as surprised as anyone to pick up a Chicken Soup for the Soul publishing credit. I am pessimistic by nature, though I prefer to refer to myself as a “realist.” My job as a journalist involves me seeing the worst and best of humanity day in and day out, and I admit the bad news seems to have more of an impact than the positive.

But that is exactly what Newmark is trying to address in this collection, which offers simple, realistic tips on generating greater happiness and satisfaction in your life. Newmark uses prior Chicken Soup for the Soul submissions as the main resource, adding what she learned or how she applied some of those lessons. Newmark was a successful Wall Street analyst before she took the Chicken Soup for the Soul helm, so she doesn’t gush rainbows and kittens, but addresses struggles that many people can relate to and how changing your perspective or outlook can help. There are no wonder cures or guarantees of happiness here, but I found myself relating to quite a few of the essays.

One that definitely hit home was the “Imposter Syndrome,” where people (especially women) feel like they are inadequate, even when everyone around them thinks they are amazing. I definitely suffer from this and am sure this is common among caregivers!

I also enjoyed the essay about removing toxic people from your life and embracing the art of saying, “No.” As caregivers, we often feel it is our duty to do everything, but that eventually leads to burnout. We have to learn when to say no and ask for help.

Simply Happy goes on sale Oct. 4th and would make a thoughtful gift. If you read it, let me know what your favorite passages were.

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Dementia’s communication mysteries

I have found Kay Bransford’s blog series on “things never to say with someone with dementia” enlightening and wanted to share. Much of it I can relate to through my dad’s dementia, but there are certainly things I wish I could have done differently, if only I had known sooner. I’m passing along these words of wisdom from a dementia caregiver warrior in hopes it will help another family going through a similar experience.

When someone with dementia is silent, it does NOT mean they don’t understand you.

via Don’t assume they can’t understand you because they are silent. — Dealing with Dementia

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