Category Archives: Awareness & Activism

June 13, 2016 · 9:08 pm

Supporting caregivers of wounded warriors

weight of honor

I’m always eager to support caregiver causes, and this upcoming documentary caught my attention.

“The Weight of Honor” is a documentary about family caregivers tending to their loved ones who were wounded while serving in the military. These caregivers, often young and caring for young children, find themselves suddenly tending to spouses who have suffered catastrophic injuries and who are dealing with PTSD.

You can watch the trailer here:

I recently watched a very moving PBS documentary, “Of Men and War,” that focused on a PTSD treatment center, the first of its kind. To hear what these men went through, and what they are battling to overcome, was gut-wrenching, but something that deserves more recognition and support.

Like many documentary filmmakers, funds are tough to come by, even for such a noble cause. Director and producer Stephanie Howard has started a crowdsourcing campaign for finishing funds for the film. If you would like to support the project, please consider a donation and share information about the film on your blog and social media.

I look forward to seeing this documentary and learning more about what military family caregivers experience.

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June 2, 2016 · 8:01 pm

Thanking Jim Garner and family

I have been following Jim Garner’s inspiring, heartbreaking, well-documented journey with early-onset Alzheimer’s.

He died in April, five years after his initial diagnosis. His mother and brother also died from the disease.

https://twitter.com/alzjourney4m/status/716447814511767552

Garner was only 53 years old, and leaves behind a wife and two children. The family showed remarkable strength, grace and selflessness in allowing the Daily Press to document how Alzheimer’s impacted them over the last several years.

In a struggle for aid, Garner, a veteran, was denied access to government programs, including Medicaid, Medicare and social services. Despite 23 years in the Air Force, he Veterans Administration only offered Garner  a 30-day respite stay in a one-star facility.

A friend of Jim’s wife set up a GoFundMe campaign with her reluctant approval. Karen, Jim’s wife, was overwhelmed by the outpouring of support and donations. The money raised allowed Jim to be placed in a secure memory-care unit for the remainder of his life.

Don’t underestimate the power of a caring community.

Karen wants to dedicate the rest of her life to raising awareness for Alzheimer’s, but knows that she will have to get a job to support her two children. Just by allowing her family’s struggles and triumphs to be documented, she has done so much to personalize the toll that this disease takes on the entire family.

One quote from the interview with Karen really struck me. She was talking about how Jim always was about not sweating the small stuff and taught her to appreciate the seemingly mundane things in life. “We don’t realize how lucky we are that we can empty the dishwasher until we can no longer do it, “she said.

So true.

Wishing the Garners love, peace and healing as they mourn their loss.

 

 

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April 16, 2016 · 6:01 pm

A call to support a fellow artist and caregiver

Many of you dear people who follow The Memories Project dabble in writing or other art forms, and are either caring for or lost loved ones to dementia.

Emily Page is an artist and blogger who recently lost her father, who had FTD. She has started a crowdfunding campaign for a book she is writing about the experience, which will include some of her fabulous art.

If you are so inclined and in the position to do so, please consider donating to her campaign. You can find out more about the project on her blog and via her Publishizer page.

I’ve never met Emily personally, but I have a feeling we would get along, because we both love cats and bourbon!

In less than 72 hours, I have had over 250 pre-orders for my book, Fractured Memories, about my family’s sometimes hilarious, sometimes horrible journey through my dad’s dementia. Seriously. Are you people kidding me? Did you know you were that awesome? Did you? I kind of vaguely suspected you might be pretty cool, but damn, I […]

via You People Are The Best People — The Perks of Being an Artist

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March 28, 2016 · 10:33 pm

‘Driving Miss Norma’ inspires many

I have been following the journey of Norma, the 90-year-old woman who lost her husband and learned that she had cancer in the same 2-week time span. While that would drive many of us straight to our beds, Norma surprised everyone by saying she wanted to hit the road.

Her family is taking her on a trip around the country, and Norma is having the time of her life. She chose to skip a risky surgery, and cancer treatment that would have left her sick and exhausted, and instead live out her final days on a grand adventure.

Miss Norma

Miss Norma, via Driving Miss Norma/Facebook.

 

When Norma told her doctor of her plans, he responded, “Right on!”

The world agrees, and the Driving Miss Norma Facebook page has gone viral, with thousands of people around the world following her journey.

I love her attitude. And for those who think skipping treatment is “giving up” the only thing Miss Norma has given up is the misery of uncertainty. Yes, the cancer she has will likely kill her. But instead of sitting around and worrying about it, or obsessing over treatments that may offer false hope, Norma is doing exactly what someone with a limited time span should do: experiencing every last drop of life she can, while she can.

We don’t have to wait until we are 90 and have a terminal illness to live like Norma. Sure, we can’t all necessarily hop into an RV and tour the country, but we can start carving out time to focus on what is important to us, instead of what others think is important.

 

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February 15, 2016 · 3:37 pm

Pundits tackle pain and painfully fail

There has been some buzz over what to me was a benign ad during the Super Bowl for a medication that treats opioid-induced constipation.

As any of you who have been a caregiver probably know, constipation is one of the most common side effects of long-term opioid use. My mother suffered from severe constipation during her last year. It drastically reduced her quality of life.

color pills

To me, this issue is not a joke.

To millions of Americans who live with chronic pain, it is not funny.

After the ad aired during the Super Bowl, Bill Maher cracked the following joke on Twitter.

Maher took flak for his tweet from those who suffer from chronic pain. Maher, who was fined recently for allegedly smoking a joint on television, strongly supports the legalization of marijuana, so he’s not anti-drug by any means, he just prefers weed to pills. Good for him, but for those with chronic pain who work real jobs and face drug tests, marijuana can be risky, even in states where it is legal.

The White House Chief of Staff also sounded off on the commercial.

The White House Press Secretary agreed.

These allegations, while perhaps well-meaning, are woefully misguided.

It’s true that the amount of people abusing opioids has increased dramatically since the 1990s. Pain management clinics popped up everywhere, serving as pill mills, with the doc essentially being a legal drug dealer. The pharmaceutical companies underplayed the dependency risks of their highly profitable products.

The government, under pressure to do something, placed stiff restrictions on opioids. But if you’ve ever known an addict, you know the war on any kind of drug is likely to fail. Addicts only kick the habit when they are ready to do so, and will readily switch to another drug to maintain a high. Many pain pill addicts are switching over to heroin, which is now cheaper and more readily available in many parts of the country.

The only people who are being truly affected by the government crackdown on opioids are those who suffer with chronic pain and who require these medications to function like a normal human being.

My mother relied on pain medications over the last few years of her life. After her cancer surgery, Mom was placed on a low dose of hydrocodone and her doctor kept her on it without question until the new Medicare regulations started to be phased in near the end of 2014. Suddenly, my mother was required to come in to the doctor’s office much more frequently to get her prescription refilled. It was difficult for her to get to the doctor’s office due to transportation issues and because she was in so much pain. It was devastating to know my mom was suffering and there was nothing I could do about it.

Terminal patients suffering excruciating pain should not be denied or delayed pain relief. Those with chronic pain should not face draconian laws to get the medications which help them hold down jobs and raise families. Yes, pharmaceutical companies need to be closely regulated and rehab needs to be readily available for those seeking help, but pain is no laughing matter and neither are the side effects of pain-relieving medications.

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January 19, 2016 · 8:05 pm

Nine to Ninety: A short film with a lot to say

You’ll only get to know Phyllis and Joe Sabatini for 29 minutes, but you will feel like you’ve known them for a lifetime. I saw much of my mom in the adorable yet feisty Phyllis. No doubt many of you will be able to recognize characteristics of your elderly relatives in this strong, loving couple.

The couple, married 62 years, live with an adult daughter, and you can clearly see how much genuine love flows through that house.

nine to ninety

But at 89 and 90, Joe’s health issues are becoming a major concern for the couple, and the couple’s adult children, who coordinate their living arrangements and health care. Phyllis doesn’t want to be a physical, emotional or financial burden on her daughter any more, who is raising her own child, age 9, hence the title of the short film.

The unusual solution Phyllis comes up with will likely surprise you. It’s not a choice most people would make, but it was seen as the best for their family. I’m not going to reveal any spoilers, but the film raises a lot of interesting issues about aging in place and the sandwich generation.

I have a lot of respect for the family, who talk openly about the realities of aging and death. These discussions are not always easy, especially for the granddaughter, but I think she will end up appreciating the fact that her family included her in such discussions. All too often, we overprotect children from the realities of life, but children are curious and resilient, and don’t always want to be shut out of such family matters.

I hope you get a chance to check it out. If you do see it, let me know what you thought about it. I watched it on the PBS channel on my Roku. The website for the film is called Nine To Ninety.

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November 19, 2015 · 8:00 am

Guest post: 5 tips for reducing your risk of developing Alzheimer’s

By Vee Cecil

blueberries

Image via Pixabay by JanTemmel

It seems every week, there’s a new study recommending that people do this or don’t do that to reduce their risk of Alzheimer’s. The most reliable tips line up with an overall healthy lifestyle. Guest blogger Vee Cecil highlights several popular recommendations. – Joy

Alzheimer’s disease isn’t a normal part of aging, although it is much more prevalent among seniors ages 65 and older. In fact, the risk of developing Alzheimer’s disease rises with age, doubling every five years beyond age 65. The aging population in the United States continues to grow as the Baby Boomer generation enters its senior years, thus, the incidence of Alzheimer’s disease is also on the rise.

As members of the Baby Boomer generation are expected to live longer, healthier lives than the generations before them, Baby Boomers, as well as younger generations, seek ways to maintain their health and well-being long into their golden years. While there is no surefire preventative measure that eliminates your risk of developing Alzheimer’s disease, there are a few lifestyle changes that may help to reduce your risk.

  1. Exercise regularly and avoid excessive weight gain. A healthy weight and a physically active lifestyle help you to avoid developing diseases such as heart disease, high blood pressure, and diabetes. In fact, studies have linked diabetes to a higher risk of Alzheimer’s disease. If you are among the 10 percent of older Americans who have diabetes, proper management of the disease is essential. If you aren’t already physically active, consider taking up a cardio activity like walking or swimming. Swimming is an especially good choice for seniors because it strengthens muscles that help reduce your risk of falling and is also easy on the joints.
  1. Eat a diet rich in vitamins and nutrients. According to an article appearing in ABC News, 16 researchers presented convincing evidence of the benefits of various nutritional strategies in reducing the risk of developing Alzheimer’s disease at the International Conference on Nutrition and the Brain in Washington, DC, in 2013. For instance, minimizing your intake of saturated and trans fats and getting enough vitamins and other nutrients from diet staples such as vegetables, legumes, fruits, and whole grains may contribute to a reduced risk of developing Alzheimer’s disease.
  1. Berries, in particular, have beneficial properties that may combat memory impairment. “Berries contain high levels of biologically active components, including a class of compounds called anthocyanosides, which fight memory impairment associated with free radicals and beta- amyloid plaques in the brain,” explains Prevention.com. For maximum benefit, make berries a part of your daily diet.
  1. Reduce your risk of heart disease. Scientists continue to research prevention strategies, but there is not yet a proven way to prevent Alzheimer’s disease. However, there is strong evidence to suggest that many of the same risk factors that increase your risk of heart disease also increase your risk of Alzheimer’s disease; therefore, it’s possible that lowering your risk of heart disease would also lower your risk of developing Alzheimer’s. Such risk factors include high blood pressure, high cholesterol, excess weight, and diabetes. A combination of physical activity, cognitive stimulation, social engagement, and a healthy diet is a multi-component approach in development with the hope of reducing the risk of Alzheimer’s disease.
  1. Stay mentally active. That includes reading, writing, and participating in any activities that engage your brain, such as puzzles, games, and even activities like sewing or crocheting. Studies have shown that people who remain mentally active and regularly participate in reading, writing, and other brain-challenging activities perform better in tests that measure memory and thinking. Learning promotes brain health, and activities that engage your mind are thought to help reduce memory decline over time.

There may not yet be a proven method for preventing Alzheimer’s disease, but taking steps to ensure your overall health and well-being will help you lead a longer, more vibrant lifestyle long into your golden years. Because the risk factors for Alzheimer’s disease overlap with those associated with other diseases, such as diabetes, a proper diet and regular physical activity will go a long way in preserving a healthy body and mind.

Vee Cecil is passionate about fitness, nutrition and her family. A Kentucky-based personal trainer, bootcamp instructor, and wellness coach, she also recently launched a blog, where she shares information on how to lead a happy, healthy lifestyle.

 

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November 15, 2015 · 10:19 am

Finding comfort in terrible times

As I’ve mentioned before, I’m a journalist and I’m often required to cover tragedies like the Paris terrorist attacks. In this digital age, where we are all just a tweet or a Facebook post away from another even if we are physically an ocean apart, watching the horrific scene unfold virtually live was chilling.

It’s also soul-draining to watch the death toll steadily rise, and watch the videos of the blasts and people running and screaming for their lives, as CNN and other news network repeatedly air the footage.

Artwork created by Jean Jullien.

Artwork created by Jean Jullien.

While the evil forces at work seem almost impossible to defeat, there are always signs of humanity, even in the darkest of times. For example, there were reports of strangers in the area opening up their homes to people fleeing the multiple attack scenes. These people offered shelter to those who needed it most, and did so without prompting. In an example of technology being used for good, a Twitter hashtag was set up so that those escaping could find a nearby safe haven. Churches and temples also opened their doors.

There was also a restaurant in the area of the attacks that was placed on lockdown for several hours. Though it’s doubtful that anyone had an appetite as word spread about what was happening around them, the restaurant served everyone a lovely meal. The staff said they were just doing their jobs. This was the definition of comfort food, offering sustenance to the weary.

It makes me think, on a much more personal level, how strangers and acquaintances have offered me comfort in my darkest days of caregiving. Even in the worst of times, there are people around us willing to make a difference, to offer a helping hand.

To those near and far, who offer comfort to those who need it the most, thank you.

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September 28, 2015 · 5:43 pm

We’re all juggling so much

I was on a business trip in Pittsburgh over the weekend. I don’t get to travel often, and certainly not over the last several years, when caregiving duties required me to be on call at a moment’s notice.

So it was a nice change of pace, and it just happened to be a perfect weather weekend in Pittsburgh.

Pittsburgh skyline at sunset from the Roberto Clemente (aka Sixth Street) bridge.

Pittsburgh skyline at sunset from the Roberto Clemente (aka Sixth Street) bridge.

I had a chance to talk to locals on my Uber trips from my hotel to my workplace. While I am definitely not one to initiate conversation, like my mom was, I usually end up enjoying my conversations with strangers and often learn something along the way. Pittsburgh proved to be no different.

I know often in the midst of a caregiving crisis, I would look around at others who seemed to be carefree and envy that they weren’t saddled with so many heavy responsibilities. But as it turns out, most of us are shouldering more than we’d like, and we’re just trying to do our best to survive.

One of my Uber drivers was an immigrant who is working towards a college degree and hopes to go to law school, but an unplanned child that just arrived in the world threatened to derail his plans. Another driver is a father of three kids, and juggling parenting with a full-time job that required him to get up at the crack of dawn, then works Uber whenever he can to earn money to pay for all of the activities his kids want to be involved in.

It’s so easy to get wrapped up in our own problems and dismiss other people’s struggles. A 10-minute Uber ride reminded me how so many of us are dealing with unexpected detours in our lives, and we’re doing our best to navigate uncharted territory.

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September 23, 2015 · 8:31 am

Signs you cannot ignore

On Saturday, I went to pick up my writing award. It was a nice presentation. Each of the awards is named after a famous author, and the contest organizers revealed what each author said about the winning entries. Rick Bragg said about my essay, “Strong, really strong. Made me choke up.”

Hopefully that validation will help motivate me to finish the book that I’ve been working on over the last few years.

Joy writing award

Just before I left for the ceremony, Mom’s burial flag arrived in the mail. (Even though we had her cremated, she was entitled to a flag for her Navy service and I thought it would be nice to have in a memorial display for her.) I had to take that as a sign that she was watching the day’s events, ever the proud Mom.

And if Mom was watching from the other side, so was Dad, as she wouldn’t have given him a choice! It is a bit odd to celebrate a piece about my dad’s battle with Alzheimer’s, but I know Dad would have been proud of my award too, as he secretly wanted to be a writer, and loved to read. I think he would have forgiven me for making him the subject matter.

Monday marked the four-month anniversary of my mother’s death. While life has moved on and I with it, I still find myself hitting those potholes filled with “I should have done this” or I could have done xyz better” thoughts when it comes to my mom’s care.

I know the road will smooth out eventually. In the meantime, I’ll keep looking for signs and keep moving forward.

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