November 9, 2015 · 9:05 pm

Applying writing wisdom to life as a caregiver

I attended the Atlanta Writers Conference this weekend and learned interesting tidbits about the publishing industry and enjoyed hearing about other writer’s projects.

Raymond L. Atkins, an author and guest speaker at the conference, told about how he handled a situation where the publisher selected a cover image that he felt didn’t fit the plot of his novel. The publishing house wanted to market the book as a mystery, when the author knew his book was a romance.

Sorrow_Wood_FRONT_sample2

The chosen cover featured an ominous barn. The author was puzzled because there was no such building in his book.

The publisher said they knew that, and wanted him to add a barn to the story.

The author didn’t really want to, but according to his signed contract, the matter was out of his hands and at the discretion of the publisher. So he added the darn barn.

Two pages later, that barn burned down.

To me, this was a great example of “when life hands you lemons, make lemonade.”

As caregivers, we may find ourselves following advice we question but feel powerless to challenge. But we always have power over our own actions and our attitude.

Don’t be afraid to burn barns, figuratively speaking, of course!

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November 6, 2015 · 11:16 am

The Day I’ll Finally Stop Grieving

This is not an easy read, and if you are looking for uplifting, then move along. But for me, where I am in the grieving process, this really hit home. I agree with the author that grief does not have an expiration date. That doesn’t mean that we don’t or shouldn’t go on and lead a productive life, just that our love for those gone will always be a part of us.

Source: The Day I’ll Finally Stop Grieving

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October 31, 2015 · 10:20 pm

A mix of tricks and treats on Halloween

It seems strange not picking up the phone today and wishing my mother a happy Halloween.

Even though we never spent the holiday together after I was grown, my mom always went out of her way to make Halloween special for me as a kid. That included a nifty handmade “Planet of the Apes” costume when I was very small. As I got a little older, my parents faithfully took me to a nearby park for a community event which was like a carnival, complete with games and you guessed it, candy!

halloween cards

Every time I passed a Halloween card display this month, I felt a pang in my heart. Never again would I pick out a Halloween card for my mom. And never would I receive another one from her.

But, I also have kept the cards she sent to me over the years. So I pulled a few of those out, and read the messages from happier times. This lifted my spirits.

I have no shortage of written memories from my mom. Much of the correspondence may be of the mundane variety, but there is her writing, her words, her expressions of love.

So perhaps there are more treats than tricks this Halloween after all.

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October 27, 2015 · 8:00 am

Medical studies are important, but results may be deceiving

As caregivers, we are always interested in reading the latest and greatest study on whatever condition our loved one is afflicted with. For me, I read a lot about Alzheimer’s and other dementia forms, as well as colon cancer, because those are the two conditions that claimed my parents’ lives.

Since I also work as a journalist, I know all too well how the latest studies become alarming headline fodder to generate page views. Recently, I wrote how a new study was completely misrepresented by certain media outlets, which ran with the headline, “Is Alzheimer’s contagious?” or some variation of that theme.

bacon

The scare study of the week is about processed meats and increased cancer risk. “Bacon is as bad for you as cigarettes” was a typical headline I saw today. But a deeper dive finds that the World Health Organization doesn’t actually rank what they determine to be carcinogens, so while cigarettes, processed meats, and asbestos may all be defined as known carcinogens, the risk of disease and death likely varies.

WHO does track death statistics and those would indicate that smoking still claims more lives than those eating hot dogs. So is eating hot dogs probably bad for you? Yes, if you indulge on a daily or regular basis. And while yet another recent study indicates that food can be addictive (pizza being the most addictive), cigarette smokers are likely to smoke many more cigarettes than people will eat slices of pizza or scarf down hot dogs on a daily basis. The more you are exposed to a carcinogen, the higher your risk of cancer, studies would suggest.

Another interesting twist on parsing these studies comes from the New York Times, which analyzes a study about how honey is no better for health than sugar. Despite the tantalizing headlines, the study group was alarmingly small and the study was very short-lived, making the results less reliable.

My mom disliked processed meats and red meat. She ate little meat, and was mainly a vegetarian. She didn’t smoke. Yet she ended up with colon cancer, which is the main cancer associated with these processed meat studies. So diet is no doubt important, but it isn’t everything. Sometimes, disease strikes at random.

You don’t have to be a health nut to know that bacon and hot dogs are not the healthiest nutrition choices. Enjoy in moderation, and instead of reading and worrying over the latest health study, get out and exercise or enjoy your favorite hobby.

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October 21, 2015 · 9:57 am

Time marches on, with or without us

Today it has been five months since my mother died. With the crisp mornings of fall now greeting me each day, it’s the second season I’m experiencing without Mom. It will be the first year without a Halloween card from Mom, a holiday we both enjoyed and that my mom always tried to make fun for me as a child.

I was looking through photos and came across one from just about a year ago. It was taken in Nov. 2014, when Mom was already beginning her final battle. The pain was at least somewhat bearable then, but she’d already been to the ER.

It’s one of the last pictures I have of the two of us together. She’s still smiling, still has her makeup on, was still Mom.

mom-joy-nov2014

Even though she wasn’t well then, little did we know that six months later, she would be dead.

I guess I can take some solace in the fact that she didn’t suffer that long, though it felt like to me she did. Some people can go on for years suffering much worse than my mom did.

I’m glad I made the tradition of taking selfies with Mom at the end of each trip home, even if they are not of the best quality.

We have to capture the fleeting happy moments together as best we can.

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October 19, 2015 · 1:09 pm

Facebook’s ‘On this Day’ feature reminds people of memories they’d rather forget

It started out with good intentions. Facebook created a feature called “On this Day” that reminds users what they had posted a year ago, two years ago, etc. The prior year posts are flagged in your newsfeed, and you can choose whether to share them with your friends or keep it private.

While no doubt the idea was to remind people of happy memories, such as births, weddings and family vacations, for some of us, our Facebook timelines are filled with depressing posts.

A Facebook "On this Day" moment capturing my mom's crazy shopping list.

A Facebook “On this Day” moment capturing my mom’s crazy shopping list.

If you are a long-term family caregiver, your timeline may look more like a roller coaster of memories, with good, bad and the ugly all present.

I’ve ran into a few issues with prior posts that brought up memories of my mother, and that summer of 2012 when she was recovering from cancer. There have also been some “On this Day” posts featuring departed pets. Not always the thing you want to greet you as you start your day.

Being on Facebook is a part of my job so I cannot simply ignore it.

As it turns out, other Facebook users were also having a bittersweet experience with this new feature, so now there is a filter option. Users can filter out names and/or periods of time to skip over painful memories like deaths and divorces.

If only it were that easy to filter out bad memories in real life. Still, I believe that the ups and downs of life are all part of the experience of being a human being. While I am glad Facebook added the filter feature, I haven’t actually used it yet.

If I was strong enough to survive the actual experience, I can also survive the memories.

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October 12, 2015 · 7:43 pm

Reminders of a loved one come from the strangest of places

Over the weekend, I was watching the Unauthorized Melrose Place Story on Lifetime (yes I know, feel free to judge me for my guilty pleasures.)

Let’s just say I was in a nostalgic mood.

The commercials were not geared towards the Generation X crowd that was likely watching the movie, but an older demographic. Commercial after commercial, I felt like I was being bombarded by memories of my parents. Can’t a girl catch a break while watching a stupid movie?

Ensure

First, there was the Colace ad, and that reminded me of Mom’s long battle with constipation over the last year of her life, and how that lowered her quality of life.

Then there was the Ensure ad, which of course made me think of Mom’s last month or so, and how that’s all she consumed, her meals coming down to chocolate, vanilla or butter pecan flavor drinks. I also was responsible for ordering Ensure for my dad when he was in the nursing home. Dark chocolate was his favorite, which was strange, because he never was a big chocolate lover.

Finally, there was the Depends ad, though this was for a new, “sexier” version for younger women with only mild bladder control issues. In fact, Mom really didn’t have an incontinence issue until the last week or so of her life, once she started the morphine. The ad made me remember a humorous moment years ago, when a Depends representative showed up at the newsroom I was working in to promote new products for the Health content channel I was helping to manage. My coworker got the giggles and you know how contagious giggles are! Fortunately, the Depends rep had a good sense of humor. I guess you have to when you work there.

Little did I know that a couple of years later, I would spend quite a bit of time perusing Depends for my father, as Alzheimer’s made him incontinent.

I’m guessing most people my age watching such a movie would completely tune out such ads, because it has nothing to do with their lives. But as caregivers, we become quite familiar with many things we thought we never encounter.

Who knows, maybe Mom was judging me from the other side for my movie choice!

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October 5, 2015 · 12:20 pm

Memories of hospital visits

I came across photos recently of when my mother was first in the hospital, recovering from surgery after her delayed colon cancer diagnosis.

The photos were taken in the ICU, a day or two after her surgery. I thought they captured the conflicting set of emotions that family members experience when a loved one is in the hospital.
Joy mom hospital
I paced many a hospital hallway in those days. When I needed a break from staring at Mom’s frail body hooked up to so many machines, I would stand in the doorway and watch the hushed but high activity taking place on the floor. People moaning uncontrollably in pain, relatives leaving a patient’s room looking pale and worried, children laughing and playing, blissfully unaware of the sadness and fear surrounding them.

There are so many emotions one experiences during these times, from fear and anxiety to hope and even a few much-needed laughs. Hospitals are like other worlds, with their own time structures, rules and cast of characters. For those working there, it’s just another day on the job, for patients, it can be a matter of life and death. Visiting relatives get to see it all.
joy mom hospital 3
While you learn a lot about humanity inside those hospital walls, I hope to never be back inside one, or at least not for a very long time.

What lessons have you learned from hospital visits?

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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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