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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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.


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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The Parentless Daughter

Jodi’s post captures much of what I’m experiencing now, just over three months since my mother’s death, and coming upon the 4th anniversary of my father’s death in December. I’m sure others will be able to relate to this as well.

Source: The Parentless Daughter

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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: Knauer

Photo: 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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