Category: Caregiver Stories

When Caregiving Interrupts Your Life, Get Back to the Basics

• Lisa Hyde-Barrett
• Caregiver Stories

MesotheliomaHelp is pleased to have author C. Hope Clark as a guest blog writer. Recently, both of Hope’s parents were diagnosed with Alzheimer’s, bringing her daily routine to a screeching halt. Much like mesothelioma caregivers, Hope found that she had to take care of her needs in order to better care for her parents.

By C. Hope Clark, Guest Author

I’m a novelist, with eight mysteries to my credit. Also, through my educational newsletter at FundsforWriters.com, I’ve motivated writers for 19 years. We’re award-winning, delivering a message each and every Friday for all those 19 years. A nothing-can-get-in-our-way sort of thing.

With a goal to remain positive, I lead a mission to show that anyone with drive, diligence, and a strong degree of hard-headedness can navigate the writing profession. I practiced what I preached through crazy deadlines, relocations, birthdays, weddings, holidays, and more. I preached that a dedicated writer wrote through anything.

Until we had two hurricanes and both my parents were diagnosed with Alzheimer’s within six months of each other.

In their right minds, my parents had designated me as fiduciary and medical power of attorney. Suddenly, tag, I was it . . . the go-to person for everything from where to find a restaurant to how to fire yet another doctor.

I received as many as twenty calls in a day from parents who were angry, saw dead people, and forgot where they lived, usually cursing me for not taking care of issues that didn’t exist. Doctors leaned on me to put them into a home. Family was split on how to do this, and some doctors disagreed with each other. Adrenaline and nightmares often woke me at night as everyone told me what to do but nobody could help me get it done.

Through tears, headaches, and lack of sleep, I kept telling myself to write. After all, I had deadlines. Suddenly my bottomless well found a rock-hard bottom, and not only did I struggle to write, but I wondered if I ever wanted to write again.

Practicing what I preached became more than rhetoric. Especially when my own health took a nose-dive. I felt so naïve.

Expert Insight

 The key is not to lose myself in the reality of life ~C. Hope Clark

In the midst of all the chaos of family, moving, doctors, power going out, and being the strong shoulder for parents frantic they were no longer in charge, I looked back at what I taught my readers. . . to see if I’d been spot on or theoretical in my teachings.

And this is what I learned about dealing with a complicated, stressful life:

• It’s okay to write anywhere, anytime, and any way. Forget the perfect study with the proper music background and the keyboard with the just-so touch. The goal is to put words to paper. Fix it later. I wrote 2,500 words while my father received his two-hour neurological test that diagnosed him with Alzheimer’s.
• Compromise is in order. I had a December deadline for the novel, but had given myself an earlier July goal which I’d been keeping nicely with a 500 word-a-day mission. Then all hell broke loose. Seven-thousand-miles-in-two-months-on-my-car kind of hell. I reprogrammed the deadline to October. Regretful, but I was determined to keep on keeping on. The manuscript went in December 20.
• It’s okay to tell people you have limitations. Normally highly active on social media, I didn’t want to just disappear and lose my fan base, so I let people know in my newsletters that I had my hands full, and why.
• On that note, it’s fine to be human. I explained the situation to my publisher. I told family that any day I wasn’t with them, I had to be at the keyboard. I kept one major appearance and cancelled others. Family and writing only. I boiled life down to those two basic needs.

While I’m not home free, the days I have to write are slowly increasing. I still keep a tight restraint on the commitments I accept, for fear I’ll encroach on the two basic responsibilities I have. However, this too shall pass. Right now, I’m excited to see myself coming out on the other side, and thanks to the forced down time, I’m thrilled and excited about 2018. The opportunity to make new, more extensive goals has me practically giddy.

And Newberry Sin, my eighth novel, comes out April 2018. One would never know that those words happened in doctor’s offices, in moving cars, and my parents’ living room at wee hours of the morning. Yes, I’m human, but I’m determined to instill that vulnerable humanity, and the strength that grew from it, into how I manage my new normal . . . and the next books.

About C. Hope Clark
chopeclark.com

C. Hope Clark’s newest release is Newberry Sin, set in an idyllic small Southern town where blackmail and sex are hush-hush until they become murder. The fourth in the Carolina Slade Mysteries. Hope speaks at conferences, libraries, and book clubs across the country, is a regular podcaster for Writer’s Digest, and adores connecting with others. She is also founder of FundsforWriters.com, an award-winning site and newsletter service for writers.  She lives on the banks of Lake Murray in central South Carolina with her federal agent husband.

Newberry Sin

Beneath an idyllic veneer of Southern country charm, the town of Newberry hides secrets that may have led to murder.

When a local landowner’s body, with pants down, is found near Tarleton’s Tea Table Rock—a notorious rendezvous spot, federal investigator Carolina Slade senses a chance to get back into the field again. Just as she discovers what might be a nasty pattern of fraud and blackmail, her petty boss reassigns her fledgling case to her close friend and least qualified person in their office.

Forced to coach an investigation from the sidelines, Slade struggles with the twin demons of professional jealousy and unplanned pregnancy. Something is rotten in Newberry. Her personal life is spiraling out of control. She can’t protect her co-worker. And Wayne Largo complicates everything when the feds step in after it becomes clear that Slade is right.

One wrong move, and Slade may lose everything. Yet it’s practically out of her hands . . . unless she finds a way to take this case back without getting killed.

Caring for A Mesothelioma Caregiver

• Lisa Hyde-Barrett
• Caregiver Stories, Nurse's Corner

One of the most difficult things in life is to see someone you love suffer. Patients who are diagnosed with malignant mesothelioma, or any cancer or life threatening illness, have a range of emotional ups and downs on their journey. The family member, spouse, partner or friend, that supports them also deals with an enormous emotional burden.

According to a statistic from AARP, approximately 44 million Americans provide 37 billion hours of care for their loved ones, whether it be sick, older or disabled people. The economic value of the services that family caregivers provide is estimated at approximately $350 billion annually.

This past week, a mesothelioma caregiver was sharing her story with me. She had notebooks full of the course of her husband’s mesothelioma journey. From his diagnosis to present day she had chronicled all the events, tests, procedures and surgeries that he had been through. She was encouraging other family members to keep records as she often has to advocate for her husband. She is able to do so by referring to her notebooks to remember dates and times and the corresponding discussions. It was the wife trying to get control of an uncontrollable situation.

As the conversation progressed, we started talking about how she was handling being a caregiver. It has been difficult to watch as her husband has lost weight, been uncomfortable, depressed, and anxious. It has affected her physical and mental health. As important as her job as her husband’s caregiver is, she needed to start to pay attention to her own health.

There have been studies about caregivers’ health. Caregivers have increased physical ailments as compared to non-caregivers. Caregivers also have higher levels of stress, depression, emotional problems, and cognitive problems. Another study found that strained caregivers had a 63 percent greater chance of death within four years as compared to non-caregivers.

Caregiving has many positive aspects. It can strengthen the bond between the patient and the caregiver. Many caregivers feel it is one of the most rewarding experiences that they have in their lives.

What can you do for a caregiver? The gift of time, stay with the patient for a few hours. Encourage the caregiver to go out, take a walk, see a movie, anything that they enjoy. Give the caregiver support by listening to their journey, experiences, and fears. Caregiving is a difficult, rewarding job- made easier with support!

Our Mesothelioma “Aha” Moments

• Joseph Belluck
• Caregiver Stories

From time to time, there are moments in your life where things just click. Everything falls into place and makes sense, for good or for naught. Throughout my family’s journey with mesothelioma, we all had these “Aha!” moments.

The first of these moments came from my Dad himself. We were visiting the Flight 93 Memorial together as a family. While we were walking, he had to stop because he couldn’t catch his breath. He had been having some trouble for a few months, but he later told me that this was the moment he realized that something was seriously wrong.

For me, this moment of clarity came after my father’s diagnosis when we were directed to NYU Langone for surgery by a complete stranger. I realized that this was the answer to my prayers and that God was truly in control, something I always believed, but saw in complete transparency that day.

There were many times when we thought we understood what was going on. Dad’s scans were clear for a while, so we thought that the fight was over. He participated in a clinical trial, so we assumed that everything was working perfectly. Then, when the cancer returned, we thought we knew what to expect. We were utterly wrong.

Radiation took a completely different toll on my father’s body than the chemotherapy. Ultimately, it was complications from treatment that took his life; he was cancer free when he took his last breath. We didn’t understand this. If he was “cured”, why would there be a problem? This lead to another “Aha” moment.

We realized, and more importantly, accepted, after some time, that God’s plan is perfect. The moment that Dad passed away, he was in the arms of angels and free of pain and sickness. All of this was God’s plan, and He always seems to get it just right.

Are You Hovering Over Your Mesothelioma Loved One?

• Joseph Belluck
• Caregiver Stories

Picture it… you’re sitting quietly in the room while your loved one sleeps peacefully. You start thinking that they might be a little cold, or that their breathing seems like it might be a bit off. You walk over to them, listening, carrying a blanket. Next thing you know, they’re looking at you, wondering what in the world is going on!

I am a “hoverer.” There, I admit it! When someone I care about is sick or hurt, all I want to do is watch them to make sure they’re alright. I constantly hound them with questions of, “Do you need anything? Are you ok? Should I call the doctor? Are you sure you’re alright?” And, just for good measure, “Do you promise you’re ok?”

When my father was battling mesothelioma, my hovering tendencies were heightened. The person I loved so much was facing something that we had never experienced. I didn’t know what to do, so I did what I do best. I asked a million questions every day. I was constantly calling to check in when I wasn’t there. I’m sure I drove my Dad up a wall.

But then, on the other hand, Dad knew me so well. He knew that I was spending my time worrying and wanting to help in any way I could. These are just ways that I show how much I care, and it’s not something that I can change. Dad took my hovering ways in stride, appreciating that I was there and thanking me for my concern. He answered all my questions patiently, always assuring me that he was fine.

I am grateful that my father was someone who had that patience, the patience of a saint if you ask me! Others may not be in the same mindset. Even when I tried not to take over Dad, I still ended up doing just that. It’s tough to find a balance. In this case, I think the balance has to be between the patient and the caregiver. Cultivate your relationship together and see what works for both of you. Your loved ones will let you know what they need… even if that turns out to be some space!

Help Ease the Pressure On Mesothelioma Caregivers

• Joseph Belluck
• Caregiver Stories, Faces of Mesothelioma, Family

Being a caregiver for a mesothelioma patient is a challenging, yet rewarding, experience. When you are helping out a loved one facing mesothelioma, remember to care for the caregiver as well.

Living three hours away from my parents, I was a part-time caregiver for my father. Helping him accomplish tasks that he used to do without hesitation was challenging, but mostly on an emotional level. Having family members and friends to talk to helped me tremendously. It was tough to see such a strong, active person as Dad having to ask others for help cutting the grass, cutting down a tree, moving something heavy. Being able to voice my concerns and share my feelings was (and still is) invaluable to me.

You might wonder what you can do for the caregivers, family members, and friends. As I said, for me, a listening ear made all the difference. You might offer to prepare a meal for them or to give them a night off and take over their duties for the evening. Sometimes, it’s tough to get out to run errands; pick up some groceries for them!

I know that for my Dad, it was hard to be stuck in the house in the cold weather. He loved being out in the snow, but with the meso and its effects, it made it difficult for him. In cases like this, go visit them. Take over a movie or a board game; make it a fun night in for everyone. This could also allow the caregiver some light-hearted time. They appreciate the gestures and company just as much as the patient does.

Above all, remember that just because someone has mesothelioma and their family and loved ones are caring for them, they are the same person as before their diagnosis. They need prayers, love, and support. Your friendship and concern can provide respite and peace to them when they need it the most.

Know more about Mesothelioma and how you can deal with it.