Heroes

Her husband's disease isn't covered by the VA. So she's sharing his story.

Alzheimer's disease can be brutal. Here's how one woman says we can help.

Her husband's disease isn't covered by the VA. So she's sharing his story.

“Everybody has to die, but I wanted to die after the kids grow up," Jim Garner says in a video from 2013.

That video, posted to the Daily Press website, was recorded three years after Jim was diagnosed with early-onset Alzheimer's disease. In the two years since, Jim's condition has continued to deteriorate, and he's lost the ability to speak or write.


The Garner family, Mother's Day 2015. All photos from Karen Garner, used with permission.

A 23-year veteran of the Air Force, Jim and his wife Karen hoped the VA would pay for the care he needs.

"And although Jim is a 23-year Air Force veteran and retiree, he does not qualify for any support from the VA that would pay for the care he needs," Karen wrote in a Facebook post about why her family was not celebrating Veterans Day this year.

Jim and Karen, December 2013.

The Department of Veterans Affairs provides care for Alzheimer's patients — but there are conditions.

Late last week, I spoke with Karen over the phone, and asked why the VA refused care for her husband.

After all, the VA website has this to say about Alzheimer's care:

"Care for Veterans with Alzheimer's or dementia is provided throughout the full range of VA health care services. Depending on the Veteran's needs, services may include home based primary care, homemaker and home health aide, respite, adult day health care, outpatient clinic, inpatient hospital, nursing home, or hospice care. Caregiver support is an essential part of all of these services."

Jim on his 50th birthday.

According to Karen, Jim was denied assistance because his diagnosis came after he retired in 2005.

Because Alzheimer's runs in Jim's family, it wasn't considered a service-related disease. And because Jim's diagnosis came after he'd retired in 2005 — and because their household income exceeded the threshold to receive assistance — Karen and Jim are on their own.

"When Jim and I got married 18 years ago, I envisioned a life of travel, raising our children, and eventually growing old together. Jim is the one growing old, right before my eyes, seemingly aging years in days."

And while that income threshold might make sense for someone without a family to care for, Jim and Karen have two children. Jim's care costs around $4,000 per month. He is no longer able to work, and Karen is in the uncomfortable position of trying to financially support their family and care for her husband at the same time. In a blog post from July 2015, Karen details her experience battling what she calls a "broken system."

The Garner family, December 2014.

Upworthy reached out to the VA for clarification on these requirements but have not heard back.

Karen is tired of fighting the VA, but she refuses to give up — for Jim or anyone else.

She wants to help others with Alzheimer's. It's why she's such an outspoken advocate for Alzheimer's care, having spoken to legislators, conferences, and the media about raising awareness and pushing for additional research around the disease.

Karen and Jim, 2008.

"When Jim and I got married 18 years ago, I envisioned a life of travel, raising our children, and eventually growing old together. Jim is the one growing old, right before my eyes, seemingly aging years in days. Our future life we dreamed of isn't going to happen," she wrote in her Facebook post on Veterans Day.

"Instead, I have spent our last few years fighting — fighting to get a diagnosis. Fighting to get disability. Fighting for research. Fighting for a cure. Fighting to get financial assistance. Fighting to get quality care from the VA or anyone else who offers it. Fighting to keep my family together and in peace. Fighting to pay for Jim's new home. It has been an exhausting war and I just try to win as many battles as I can while knowing we are far from being done."

Karen and Jim, 1998.

Stigma keeps a lot of people from opening up about Alzheimer's. Karen wants to change that.

It's part of the reason she's been tracking her family's journey at MissingJim.com over the past two and a half years.

"There are so many people who don't speak up about what it's like dealing with Alzheimer's, and I wanted to fight that stigma," she told me. To her, it's important to share her family's stories, even if they are sad.

The Garner family, Christmas Eve 2009.

Karen has four suggestions to change how we treat Alzheimer's patients.

First and foremost, we need to make sure family and caretakers have the resources they need. As mentioned above, Jim's care currently runs around $4,000 per month (nearly $50,000 per year). That's not something most families can realistically come up with.

Second, we need to simplify dealing with insurance companies or government agencies. Karen detailed the hours spent filling out paperwork and applying for assistance. This problem is not unique to Alzheimer's patients. As anyone who's had to navigate the bureaucracy involved with health care can confirm, it can all be discouraging — if not entirely overwhelming.

Third, we need to get serious about funding research. A report from the Alzheimer's Association paints a grim picture for the future of Alzheimer's research. As other diseases such as HIV, stroke, heart disease, breast cancer, and prostate cancer claim fewer lives, Alzheimer's deaths have been on the rise. It's the sixth-leading cause of death in America, and it receives just a fraction of research funding compared to cancer, heart disease, and HIV.

Finally, and this one comes from Jim, himself:

Jim, November 2015.

Let's start with that last one, OK? Let's share the stories of people like Jim and Karen. Let's fight stigma.

True

When Sue Hoppin was in college, she met the man she was going to marry. "I was attending the University of Denver, and he was at the Air Force Academy," she says. "My dad had also attended the University of Denver and warned me not to date those flyboys from the Springs."

"He didn't say anything about marrying one of them," she says. And so began her life as a military spouse.

The life brings some real advantages, like opportunities to live abroad — her family got to live all around the US, Japan, and Germany — but it also comes with some downsides, like having to put your spouse's career over your own goals.

"Though we choose to marry someone in the military, we had career goals before we got married, and those didn't just disappear."

Career aspirations become more difficult to achieve, and progress comes with lots of starts and stops. After experiencing these unique challenges firsthand, Sue founded an organization to help other military spouses in similar situations.

Sue had gotten a degree in international relations because she wanted to pursue a career in diplomacy, but for fourteen years she wasn't able to make any headway — not until they moved back to the DC area. "Eighteen months later, many rejections later, it became apparent that this was going to be more challenging than I could ever imagine," she says.

Eighteen months is halfway through a typical assignment, and by then, most spouses are looking for their next assignment. "If I couldn't find a job in my own 'hometown' with multiple degrees and a great network, this didn't bode well for other military spouses," she says.

She's not wrong. Military spouses spend most of their lives moving with their partners, which means they're often far from family and other support networks. When they do find a job, they often make less than their civilian counterparts — and they're more likely to experience underemployment or unemployment. In fact, on some deployments, spouses are not even allowed to work.

Before the pandemic, military spouse unemployment was 22%. Since the pandemic, it's expected to rise to 35%.

Sue eventually found a job working at a military-focused nonprofit, and it helped her get the experience she needed to create her own dedicated military spouse program. She wrote a book and started saving up enough money to start the National Military Spouse Network (NMSN), which she founded in 2010 as the first organization of its kind.

"I founded the NMSN to help professional military spouses develop flexible careers they could perform from any location."

"Over the years, the program has expanded to include a free digital magazine, professional development events, drafting annual White Papers and organizing national and local advocacy to address the issues of most concern to the professional military spouse community," she says.

Not only was NMSN's mission important to Sue on a personal level she also saw it as part of something bigger than herself.

"Gone are the days when families can thrive on one salary. Like everyone else, most military families rely on two salaries to make ends meet. If a military spouse wants or needs to work, they should be able to," she says.

"When less than one percent of our population serves in the military," she continues, "we need to be able to not only recruit the best and the brightest but also retain them."

"We lose out as a nation when service members leave the force because their spouse is unable to find employment. We see it as a national security issue."

"The NMSN team has worked tirelessly to jumpstart the discussion and keep the challenges affecting military spouses top of mind. We have elevated the conversation to Congress and the White House," she continues. "I'm so proud of the fact that corporations, the government, and the general public are increasingly interested in the issues affecting military spouses and recognizing the employment roadblocks they unfairly have faced."

"We have collectively made other people care, and in doing so, we elevated the issues of military spouse unemployment to a national and global level," she adds. "In the process, we've also empowered military spouses to advocate for themselves and our community so that military spouse employment issues can continue to remain at the forefront."

Not only has NMSN become a sought-after leader in the military spouse employment space, but Sue has also seen the career she dreamed of materializing for herself. She was recently invited to participate in the public re-launch of Joining Forces, a White House initiative supporting military and veteran families, with First Lady Dr. Jill Biden.

She has also had two of her recommendations for practical solutions introduced into legislation just this year. She was the first in the Air Force community to show leadership the power of social media to reach both their airmen and their military families.

That is why Sue is one of Tory Burch's "Empowered Women" this year. The $5,000 donation will be going to The Madeira School, a school that Sue herself attended when she was in high school because, she says, "the lessons I learned there as a student pretty much set the tone for my personal and professional life. It's so meaningful to know that the donation will go towards making a Madeira education more accessible to those who may not otherwise be able to afford it and providing them with a life-changing opportunity."

Most military children will move one to three times during high school so having a continuous four-year experience at one high school can be an important gift. After traveling for much of her formative years, Sue attended Madeira and found herself "in an environment that fostered confidence and empowerment. As young women, we were expected to have a voice and advocate not just for ourselves, but for those around us."

To learn more about Tory Burch and Upworthy's Empowered Women program visit https://www.toryburch.com/empoweredwomen/. Nominate an inspiring woman in your community today!

Vanna White appeared on "The Price Is Right" in 1980.

Vanna White has been a household name in the United States for decades, which is kind of hilarious when you consider how she gained her fame and fortune. Since 1982, the former model and actress has made millions walking back and forth turning letters (and later simply touching them—yay technology) on the game show "Wheel of Fortune."

That's it. Walking back and forth in a pretty evening gown, flipping letters and clapping for contestants. More on that job in a minute…

As a member of Gen X, television game shows like "Wheel of Fortune" and "The Price is Right" send me straight back to my childhood. Watching this clip from 1980 of Vanna White competing on "The Price is Right" two years before she started turning letters on "Wheel of Fortune" is like stepping into a time machine. Bob Barker's voice, the theme music, the sound effects—I swear I'm home from school sick, lying on the ugly flowered couch with my mom checking my forehead and bringing me Tang.

This video has it all: the early '80s hairstyles, a fresh-faced Vanna White and Bob Barker's casual sexism that would never in a million years fly today.

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