Tag Archives: caregivers

Dealing with a natural disaster as a caregiver

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As a caregiver, every day may seem filled with disasters, both small and large. Caregivers constantly are dodging landmines, whether it’s working with a difficult patient, controlling pain, managing new symptoms or handling finances. That’s one reason why I referenced the metaphor in my new collection of caregiving essays, “The Reluctant Caregiver: Missives from the Caregiving Minefields.”

Back-to-back major hurricanes in the U.S. revealed another area where caregivers must be prepared: natural disasters. Most of you probably saw the heartbreaking photo of nursing home residents sitting in floodwaters in Texas during Hurricane Harvey. Fortunately, they were all saved, and staff risked their lives to stay with them all night long.

Still, I couldn’t help but wonder what, if any, were the evacuation plans for the nursing home? From what I read, it was located near a bayou, so the flood risk was real.

As people prepared for Hurricane Irma this weekend, I heard multiple reports about care facilities, including those for Alzheimer’s care, making the decision not to evacuate. It may seem like a no-brainer but there were complications. Gov. Scott of Florida implored for more nurses to step forward to volunteer in special needs shelters. At the time, they were understaffed, making some care facility managers leery of evacuating and not having a safe space for those with complex care needs.

Dementia caregivers know how any disruption to the normal routine, along with a chaotic atmosphere, can exacerbate symptoms. Can you imagine trying to deal with wandering patients in the chaos of a shelter? I’m not trying to judge those who made the decision to stay, but I do think it is a good reminder for anyone who is caring for a loved one right now to make an emergency plan.

If a natural disaster strikes your area, are you prepared to evacuate with your loved one? Do you know where you will go? How will your loved one’s medical needs be met? Do you have friends or other family members that would be willing to take you in temporarily? If you make the decision to stay behind, do you have a safe, accessible place in your home that will offer protection?

My parents never had to evacuate, but a wildfire did get pretty close to their neighborhood at one point, and I remember my parents being uneasy about the thought of evacuating. Fortunately, they were both in good health at the time and the fire was brought under control. I can’t imagine trying to keep track of my father at a shelter once he developed dementia, because he wandered. When my mother was recovering from colon cancer surgery, trying to change a colostomy bag in the very public realm of a busy shelter would have been a challenge.

While the images that have come out of Texas and Florida over the last couple of weeks have been heartbreaking, it is a good time for the rest of us to make sure we are prepared when Mother Nature’s fury comes our way.  Sometimes, the worst moments can bring out the best in us, as when this man at Lowe’s gave up his generator to a woman who needed it for her father who requires an oxygen tank.

Consider giving to a hurricane relief fund established by Caring Across Generations. All proceeds will go directly to local organizations in Texas and Florida who assist caregivers.

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My collection of caregiving essays is now available

I’m excited to announce that The Reluctant Caregiver, my collection of caregiving essays, has been published and is available on Amazon and most digital bookstore platforms. It will be available as a paperback soon.

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Those of you who have followed The Memories Project for awhile know that I’ve been talking about publishing such a book for quite some time. It was very satisfying to hit the publish button.

I hope you’ll consider reading the collection, and telling others about it. Do keep in mind that the book presents a nontraditional perspective on family caregiving, and does contain some profanity. There are some graphic details about caregiving included in the essays, but also some humorous moments.

I think many caregivers will be able to relate to the roller coaster of emotions that accompanies any caregiving journey. I try to capture the good days and the bad days, the inspirational moments and those trying times that have sparked my interest in being a caregiver advocate. My ultimate goal is to reassure those caregivers who may be struggling, and to encourage caregivers to reach out if they need help.

Where to buy The Reluctant Caregiver:

Amazon: http://a.co/82c41dY

Other digital bookstores (including iBooks): http://books2read.com/u/3L9DnN

I’m available as a guest blogger and if you are promoting a book yourself, please reach out to me for cross-promotion opportunities.

Thanks for your support of The Memories Project. The feedback I’ve received from the blog and the connections I’ve made have helped turn The Reluctant Caregiver project into a reality.

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Family’s gift to caregiver an inspiring way to pay it forward

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Photo by Marius Muresan/Freeimages.

There was a wonderful story posted on CNN recently, and it reinforces the fact that there are still good people doing good things in this world, even as they faced difficult circumstances in a world that seems increasingly unkind.

The Wright family in Georgia hired a caregiver, RonTunDe Hector, to provide home hospice care for Judy Wright, who had Parkinson’s disease. After positive feedback from his father, Chris Wright, Judy’s son, arranged to meet RonTunDe in person.

As it turned out, they already knew each other.

Hector had been going through a rough time a few years before, and ran out of gas on the highway. As she walked down the road with her gas can, a man pulled up and asked if he could help. She explained the situation and the man filled up her tank and gave her $40.

That man was Chris Wright.

Though the pair were reuniting once again in the midst of difficult circumstances, the bond was strong. Hector even accurately predicted the day Judy Wright died.

After Judy’s death, the family wanted to honor Hector’s compassionate care and help her continue growing in her profession. The family raised funds to send Hector to nursing school, a dream she had long had but was unable to afford.

The online campaign has now raised over $33,000, funding by over 800 donors. The Wright family’s generous act will now help countless other people who will be cared for by Hector.

 

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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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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

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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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