Category Archives: Awareness & Activism

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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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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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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Is the media misleading the public on Alzheimer’s?

It seems to be a mixed blessing that the media is paying more attention to Alzheimer’s.

On the one hand, the spotlight on a disease that has long been kept in the shadows is welcomed. But modern journalism’s need for clicks sometimes leads to misleading headlines, which only hurts the awareness movement.

Brain

Recently, a study came out which demonstrated in a very small sample of autopsies of 8 people who had been diagnosed with the rare brain disease, Creutzfeldt-Jakob disease related to growth-hormone treatment, 6 of the 8 showed an increase in amyloid plaque that scientists believe is linked to Alzheimer’s.

It is certainly an interesting study, and the results were unexpected, but there are not any solid takeaways until larger studies can be performed. Yet, in the click-crazy world of online journalism, some outlets ran with the headline, “Is Alzheimer’s contagious?”

I’ve read accounts from those with Alzheimer’s who criticize the use of the term “Alzheimer’s sufferer” because they are doing their best to live successfully with Alzheimer’s and sufferer sounds like there is no hope with anyone with the disease.

I might be guilty of using the term “suffering” when describing my Dad’s experience with Alzheimer’s, but that’s because I truly believe he was suffering. I don’t think it should be used as a blanket term, especially for those in the early stages of the disease.

As a journalist, I try to be aware of these considerations, but I encourage everyone to politely correct those who provide misinformation on Alzheimer’s or any other disease.

The old expression of “all publicity is good publicity” may be true for Alzheimer’s, but it is the responsibility of advocates to make sure the coverage is accurate.

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Finding caregivers where you least expect it

I was dreading going to my dental cleaning appointment for multiple reasons. I always dread these appointments because I’m not fond of the forced chatter, especially when there are instruments in my mouth!

The main reason I was dreaded the visit was because the last time I was there, my mother was headed to the emergency room for the last time. I was already on my way to the dentist when I received my mom’s call, saying she couldn’t stand the pain anymore. I remember texting my mom’s personal caregiver from the dentist’s chair. I didn’t tell the staff about the caregiving crisis I was dealing with at the time because frankly, it was none of their business.

Photo: Freeimages.com/Olaf Knauer

Photo: Freeimages.com/Olaf Knauer

I remember sitting in that dentist’s chair over the next hour, my heart pounding, but not for fear of the tools buzzing in my mouth. After all of the ups and downs with my mom’s health over the last couple of years, was this finally it? The real beginning of the end?

In my heart, I knew it was, and it terrified me.

The very next day, I left for New Mexico to be with my mother.

I always have the same dental technician who does my cleaning. She asked the obligatory “how my summer was” question, and instead of just glossing over the question and telling a little white like like I would normally do, I told her the truth. My mother had died, and I had spent the summer dealing with post-death tasks.

She offered her condolences and asked what caused my mother’s death. When I told her colon cancer, she began telling me about her own caregiving experience that she is going through with her father-in-law.

Some of her experiences were similar to mine, in that her father-in-law’s tests came back fine, until he was diagnosed with Stage IV colon cancer. (My mom was diagnosed with Stage III.) He actually collapsed in the emergency room, and that’s what finally forced doctors to figure out a diagnosis.

She said they chose to move him into their home, so they could help take care of him and so that her husband would get to spend extra time with his father. She talked about the guilt her husband felt for not being able to help his dad more, and sooner, something I can totally relate to from my caregiving experience.

The conversation made me think about how many people we come in contact with in our daily lives that are also in a caregiving situation. It’s probably more than we imagine. If I hadn’t opened up, I would never had known that my dental technician was also a caregiver.

Don’t hesitate to share your caregiving story with strangers, if the opportunity arises. You never know what tips or support you may be able to offer each other.

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Today’s lesson: Don’t give up

I have some exciting news to share: I have been chosen by the Atlanta Writers Club as the 2015 recipient of the Rick Bragg Prize for Nonfiction.

AWC 2015 contest winners

The piece that I submitted, “Greetings from the Nursing Home,” was an essay that I have kicked around for a long time. I began the piece after my first visit with Dad at the nursing home. That was back in 2011.

Since then, the essay has gone through countless revisions, and has been critiqued multiple times. I have submitted the piece numerous times to contests and literary journals for publication.

Each time, it was rejected.

As any writer knows, rejection is part of the process. I kept plugging away. I’ve written other pieces that have been published, I’ve self-published essays on various online platforms, but this one essay was special to me. While finishing my book is my number one writing goal, close behind was getting this essay recognized.

I learned of the honor as I was standing in the middle of what was my parents’ condo. The living room furniture had just been removed, and donated to charity. I was standing in the empty room, considering the new possibilities, when my phone buzzed and I literally jumped for joy after opening the email with the “Congratulations” subject line.

I hope this will inspire all of you, that however you express your caregiving story, whether it is through the arts, sports, spiritually or any other form of expression, don’t give up hope. Your message is being heard, and it will find a proper home.

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My essay about dying at home posted on The Caregiver Space

I’ve been reading posts on The Caregiver Space for quite some time, but never had time to submit my own writing.

Now that I find myself in a post-caregiving phase of my life, I’m really trying to focus on writing a series of essays that have been stewing in my brain for awhile.

hospital bed

Last week, The Caregiver Space published my essay, “Why dying at home is not all it’s cracked up to be” and the reception has been quite positive. The post was published on The Caregiver Space Facebook page where it generated several hundred likes and many heartfelt comments.

The essay is not an attack on hospice care workers; I admire most of them and think they do a phenomenal job. Hospice care is truly a calling in my opinion, and one can see the benefit of the loving, compassionate care they provide.

My essay is a look at dying at home vs. dying in a facility from the family caregiver’s perspective. After my dad died in a skilled nursing facility, I was all for my mother dying at home. But the reality was a bit different. It was an emotionally brutal experience that I wouldn’t wish on my worst enemy. That’s not to say that her death would have necessarily been better in a hospital, it would have been difficult in a different way.

My main point of the essay is to bring awareness to family caregivers in rural areas. They may find that the local home hospice agency is understaffed and overworked, and cannot provide the around-the-clock care that is often touted by die-at-home advocates. People should be aware and prepare themselves for taking on more of the nursing duties of caregiving. If they feel they cannot do it themselves, they should seek out help from family, friends or professional caregivers.

If you have the time, please read the essay and let me know what you think. Also, please share with anyone who you think could benefit from the information.

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White House Conference on Aging: Great discussions, now we need to see action

Update: I was moved by many of the stories and statistics shared at the White House Conference on Aging. How little paid caregivers earn and the rallying cry to pay them a livable wage of $13/hour. A woman who juggles the demands of motherhood and her father who has Alzheimer’s, yet sits on hold or gets the run-around when calling for help from government agencies.

There were many programs and initiatives unveiled at the conference, and while many sound promising, the proof will be in the results.

Original post:

The White House Conference on Aging is happening today. I think it will be of interest to many who follow this blog.

I wish I could be in Washington, D.C. to participate in person, but I am following along with the live stream of the conference and taking part in the conversation on social media by using the hashtag #WHCOA.

whcoa logo

I hope the conference will help generate greater awareness for the issues impacting caregivers in America, both family caregivers and professional caregivers. The fact that the government is taking a day to discuss aging issues is progress, but of course, legislative action and government funding is ultimately what is needed.

If you catch any of the conference, share your thoughts below.

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Glen Campbell documentary ‘I’ll Be Me’ a powerful, profound look at Alzheimer’s

I finally had the chance to see the documentary about Glen Campbell called, “I’ll Be Me.” I highly recommend seeing it, even if you are not a fan of Campbell’s music.

The documentary is an unflinching yet loving look at how Campbell and his family have managed his Alzheimer’s diagnosis. The film once again confirms the power of music. It was amazing to see how long Campbell’s music ability endured, even as he entered the late middle stages of the disease.

Embed from Getty Images

The film, made in conjunction with his family, doesn’t shy away from the ugly aspects of Alzheimer’s. Viewers witness Campbell’s temper, repeating questions, communication difficulties, wandering, discussions of incontinence episodes and paranoid outbursts.

Viewers get a behind-the-scenes look at the sometimes chaotic backstage scene before shows. As we all know, those with Alzheimer’s have good and bad days, until they end up with more bad ones than good ones. When you are performing in front of hundreds of people, the good and the bad are magnified.

Campbell is now in the final stages of the disease and lives in a residential care facility.

For Campbell fans it will be difficult to watch one of the greatest guitarists of all times deal with such a debilitating disease, but his phenomenal guitar work is on display throughout the film, as is his sense of humor and his fighting spirit.

If you’ve seen the film, please share your thoughts.

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Being the ‘angry advocate’ is sometimes necessary

I don’t like conflict. I like things to run smoothly and everyone to do their job. This is especially true during a crisis.

Of course, it is in these tough situations that conflicts and issues often arise.

Ironic door sign

I found out yesterday that after waiting over a week for hospice to begin, with my mom reporting an 8 out of 10 on the pain scale during every home health visit, that the hospice transition process had not even started! The home health agency told me I needed to talk to my mother’s primary care physician. But last week, when I was at the doctor’s office, I asked about starting hospice and the doctor’s staff told me the home health agency needed to fax them paperwork.

I was beyond frustrated. I don’t get angry very often but I was really furious. My mom had suffered needlessly for over a week because these two entities that work with each other all the time can’t get their acts together?

Since the local home health agency is now part of a larger corporation, I filed a complaint at the corporate level. I don’t generally like to throw people under the bus but I wanted action.

And it worked. Tomorrow a staff member is coming to transition Mom to home hospice.

I just wish I had been the angry advocate sooner.

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