Tag Archives: caregiver

Everyone has a caregiving story

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Keynote speaker Walt Mossberg shared his insights on the future of technology.

I’m at Digital Book World in Nashville this week so this post will be brief.

I’m always amazed at just how universal the experience caregiving is, and how everyone has a story to tell about that experience. It’s so interesting to attend a conference and come into contact with so many people from all walks of life, and when they find out I write about caregiving, they are typically eager to share their own stories.

As Rosalynn Carter to eloquently said, “There are only four kinds of people in the world: those who have been caregivers, those who are currently caregivers, those who will be caregivers, and those who will need caregivers.”

Just wanted to share this observation for caregivers out there who may be isolated and are feeling alone. You are most definitely not alone. There is a large, passionate, imperfect but striving to do their best tribe of family caregivers out there.

Don’t be afraid to share your caregiving story.

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Marking five years since Dad’s death

It’s hard for me to believe that five years have passed since my father’s death. So much has happened in those five years that I feel almost like a different person, or that I experienced December 20, 2011 in a different lifetime.

Little did I know at the moment I learned of my father’s death, in the newsroom of the Atlanta Journal-Constitution, on a cold and rainy Tuesday, that six months later, I would become caregiver for my mother. Even at that moment, the colon cancer was likely growing inside of her, waiting to make its ugly appearance in our lives. I thought I would spend 2012 grieving for my father, but instead, I had to shelve my grief in order to care for my mother.

I never expected to be virtually unemployed for well over a year after my mother fell ill. It was my father’s death that allowed me to pursue new career opportunities, as I had not wanted to take a new job when I knew he may pass at any moment. It turned out to be a bad move, and when Mom required emergency surgery, I was forced to quit after just two months, to go tend to her in New Mexico.

If I had guessed what my life would be like five years from that dreaded day in December 2011, I would not have imagined my mother being dead for a year and a half. She was 74 at the time of my father’s death, and appeared to be in good physical shape. I was most concerned about her loneliness and depression after Dad’s death.

Sometimes it all seems like a bad dream, but of course, I know all too well that it was real life. Good things have happened over these five years: my writing won an award, I secured full-time employment again, I’m slowly but surely crawling my way out of debt. I’m using my experiences, both positive and negative, in the caregiver advocacy role that I now cherish. The past five years have been turned into essays that have touched people and generated conversation around the topic of caregiving.

I certainly would never want to live the past five years of my life over again, but I am a better person for surviving them, and for taking the lessons my parents taught me to help others in a similar situation.

 

 

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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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Playing the waiting game with Death

My mother’s health took a big turn for the worse this week.

The hospice nurse expects her to pass in days, maybe a week, though her heart is very strong, so she could last longer.

Mother's Day

Mother’s Day

For her sake, and mine, I hope that the suffering is not prolonged.

She is now totally bedridden, somewhat delirious and a new pain complaint has popped up the last two days. She now complains of severe head and neck pain. The nurse cannot figure out what may be causing it. It is unlikely that the colon cancer, if it has returned, spread to her brain, though it is a possibility.

But the morphine is not really touching the head pain, even when dosed hourly. She is so “zonked out” by the pain meds yet still is pointing to her head and grimacing. That is tough to watch.

Mom’s face has been taken over by that ghoulish death mask. Her eyes are starting to look beyond.

But her heart continues to beat hard and strong in her emaciated chest.

In one of her lucid moments, my mother asked what had happened to her. And to that, I had no good answer.

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One of those weeks caregivers dread

Last Monday, I tried to call Mom but her line was busy. This is not that unusual, so I didn’t think too much about it. A few minutes later, I received a call from an unknown number. By the time I Googled it and saw that it was the Lifeline number, the call had gone to voice mail. I immediately called back without waiting for the message.

Mom had slipped off the bed and fallen. She fell on her butt, thankfully, but was still sore and shaken up. Fortunately, she was checked out by EMS and seemed ok, so no ER visit was necessary.

Still, I fear it is the beginning of the “no longer can live at home alone” phase. Mom’s done pretty well this past week, all things considered, but the tricky part for caregivers is knowing when to make these key decisions for a loved one’s care.

Beautiful Elle, RIP.

Beautiful Elle, RIP.

At the same time that was going on, our 16-year-old cat was rapidly declining. A cancerous lesion on the roof of her mouth meant she could no longer eat without discomfort, even with pain medications. Sadly, over the last few years, I’ve become used to the euthanasia process. While thankful that we have that choice for pets, it is still brutally heartbreaking to have to make that decision.

My mom wishes she could be like the cat and just go on. She says she is ready and she is not afraid of what is beyond. She is miserable with being in constant pain, and having a loss of appetite and fatigue. The doctors are no closer to diagnosing her than before. Is the cancer back? She’ll have to have a colonoscopy to determine that, but at barely 100 pounds and weak, she’s in no shape for the preparation.

She also hates to be a burden on others. While certainly I can’t deny the stress the last few years have created, I don’t want my mother to feel guilt over something she cannot control.

With wry humor, I know that we are going to have to get a bigger shelf to hold all of our memorials, for people and pets lost over the years. It’s getting crowded up there.

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The beautiful and ugly world of Alzheimer’s

I read a lot of personal essays written by those who have been impacted by Alzheimer’s, but this one really moved me emotionally. It was published on Huffington Post and titled, “I Never Expected My Mother to Be Diagnosed with Alzheimer’s When I was 26.” Not only does the essay give us a glimpse into how the younger generations are being touched by this disease, it is beautifully written.

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In the essay, Rebecca Emily Darling discusses some of the upsides of her mother’s Alzheimer’s, such as a greater appreciation of ordinary things, and a nicer demeanor. Yet even these “benefits” are tinged with sadness, because they only illuminate how much the disease has changed the personality of her flawed but beloved mother.

The essay by Darling sums up the good and the bad of this disease so eloquently. If you have a chance to read it, let me know what you think.

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Bittersweet holiday

As I’ve written before I’m sure, Thanksgiving was my dad’s favorite holiday. He loved turkey! My dad was not one to get too excited about food normally, so it was a big deal to watch him devour slice after slice of turkey.

While I can still recall those fond family memories, they are unfortunately overshadowed by that Thanksgiving three years ago. Dad was in the ICU, clinging to life. I was trying to figure out when I should fly out, because I was working the entire holiday weekend. The nurse said he could pass in two hours or two months, there was no telling. As soon as I arrived to work on Black Friday 2011, I received the call from a nurse, frantically asking me if they should pull the plug on my dad’s life support.

turkey

I’m now back working in the same newsroom I was that day when I received that terrible call. Every now and then I’ll glance to that corner of the room and remember the pacing I did that day three years ago, trying my best not to completely freak out from the stress. I’m once again working the holiday, but from home this time. Thankfully I won’t have to mark the anniversary of those painful memories at the office.

So Thanksgiving is bittersweet for me. I still enjoy the food and try to focus on the happy memories. Life, and death, does not pause for holidays.

I hope somehow, somewhere, Dad is enjoying a few big slices of turkey.

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