MCSMN Blog

June 1, 2018

The Choice and Challenge of Being “Good Enough”- A Caregiving Story – Experts by Experience

By Scott, Volunteer Mentor

Caregiving arrived without fanfare on her birthday–a June day in 2002–when my wife was diagnosed with brain cancer. It was in one of the small consultation rooms that I first heard the word ‘caregiver’ as my wife lay in a coma in the ICU, while I vacillated between being brave and despondent. There was no training, no employee manual or job description. Just, “You’re her caregiver.”

I was a seasoned business executive and husband of 27 years. I always knew how to manage, especially with the goal of achieving perfect outcomes. I told myself I’d do the same with caregiving.

It was "good enough."

My wife was discharged after 48 hours. We drove from Minnesota to Illinois and had to spend a night on the road because the rehab facility had no beds available. On that trip back, we realized how unprepared we were to meet her needs. Our daughter had to hold my wife to keep her from constantly opening the door while we were driving. When we stopped to eat at a restaurant, we were asked to leave since my wife was “unsettling” their customers. We grabbed a quick to-go order and ate on the beds in the hotel. It was “good enough.”

On the second day at the rehab facility, reputed to be one of the very best inpatient brain injury facilities in the United States, we were told they wouldn’t be able to provide services to someone with the emotional disturbances that my wife exhibited. She needed additional supervision and our family would have to provide it. It was summer, so our daughter took the day shifts and I took over as soon as I came home from work for the day. It was “good enough.”

Once we returned home, my wife’s anxiety was out of control, despite the extensive daily medicinal cocktail, and her concentration lasted for only minutes at a time. Finding paid help was unreliable and nearly all our friends and family ghosted on us. We made do with the help our children could provide without totally giving up their lives, and with an exhausting revolving door of subpar paid help. But, it was “good enough.”

Managing when caregiving overwhelmed

Even though I was the organization’s top producer, I was fired from my job because the new manager didn’t want “someone with family on their mind.” Nevertheless, for over seven years we managed, “good enough.”

Caregiving was overwhelming–too many things to do, and too few hours in a day to do them. Dust bunnies, dirty laundry, and dishes were constant companions. Shirts looked fine, un-ironed. “Good enough” became my lifeline, especially when I had to deliver 32 doses of medications daily. I kept a pillow on the sofa, which became my punching bag when frustrations ran high. That worked fine until one tough night, when I hit it too hard, and then spent the night cleaning up the living room which had feathers everywhere!

Caregiving costs and scars

Caregiving carries huge societal costs for patients, families, and the caregivers. Approximately 39.8 million caregivers provide care to adults with a disability or illness or 16.6% of Americans. Medical professionals should not ignore the realities of caregiving or leave it up to individuals to figure out how to manage. My wife fought her battle with brain cancer for over 14 years. I’m still struggling with the caregiving scars and guilt I carry in my heart.

“Good enough” shouldn’t become just good enough.

Experts by Experience is a collaboration between Inspire and Mayo Clinic Connect, online support communities for patients and caregivers. By sharing their stories, patients and caregivers awaken, inform, and strengthen the capacity to partner in their care. The stories also help clinicians and non-medical professionals in health care implement patient-informed practices in their interactions and communications, by uncovering opportunities for quality improvement. The series showcases the value of shared experiences and features contributors from around the globe.

About the author: Scott Phillips, husband, father, grandfather, and former professional fundraiser, counts his most significant accomplishment in life, his years as his wife's caregiver. Scott volunteers on Mayo Clinic Connect, and is an avid collector of wines from the Napa region. A born and bred Midwesterner, Scott loves family, good friends, and spending time up North.

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Tags: caregivers, Experts by Experience, patient advocacy, Patient Involvement

Oh Scott, thank you so much for sharing your story and letting others know they are not alone. Although you may feel like it, you are NOT just "good enough." You and your children are warriors for what you went through, and having the strength and courage to help others who may be going through the same thing makes you an angel. You'll never know how many lives you've touched, but I know your wife thinks you're making more than a "good enough" impact.

@audreylaine

Oh Scott, thank you so much for sharing your story and letting others know they are not alone. Although you may feel like it, you are NOT just "good enough." You and your children are warriors for what you went through, and having the strength and courage to help others who may be going through the same thing makes you an angel. You'll never know how many lives you've touched, but I know your wife thinks you're making more than a "good enough" impact.

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Thank you, @audreylaine for the kind words. Caregiving can be such an isolating caldron that I am happy to be able to share with others in the hopes they will not feel so alone. Thanks again!

Thanks for sharing your story Scott. Sharing our stories are so important to help us feel less alone.I met someone this past week who was a caregiver for his Mom with Alzheimer's disease, I am going to share this with him now as I am sure he would like to comment on it.

I love your story, Scott. I have no doubt that your efforts as caregiver were much more than "good enough" and I'm sure that your wife felt the same.

Teresa

I can't even comprehend the devotion and commitment it took to care for your wife for 14 years, Scott. Thank you for being a tremendous example to all of us. Do you mind sharing with us what was the hardest thing about those years?

Thank you for the kind words, @DanHinmon

As I reflect back I have to say there was definitely one aspect of caregiving I'd classify as 'hardest' for me. The very hardest aspect was to see my wife continue to decline in spite of my best efforts as a caregiver. My overwhelming feelings of insufficiency often took me to the very brink of my emotional stability.

@IndianaScott

Thank you for the kind words, @DanHinmon

As I reflect back I have to say there was definitely one aspect of caregiving I'd classify as 'hardest' for me. The very hardest aspect was to see my wife continue to decline in spite of my best efforts as a caregiver. My overwhelming feelings of insufficiency often took me to the very brink of my emotional stability.

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I can certainly understand that. Conversely, were there any moments when you felt at peace or even joyful? I don’t mean to get too personal here.

@IndianaScott

Thank you for the kind words, @DanHinmon

As I reflect back I have to say there was definitely one aspect of caregiving I'd classify as 'hardest' for me. The very hardest aspect was to see my wife continue to decline in spite of my best efforts as a caregiver. My overwhelming feelings of insufficiency often took me to the very brink of my emotional stability.

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No problem at all, @DanHinmon It's why I came to Connect in the first place — to share the realities of caregiving.

I had to give this one more thought and after careful reflection, I have to say I can't remember a single one. I never regretted being my wife's caregiver for a second, but I also never had a pleasant moment in those 5,100+ days as I watched brain cancer ravage my wonderful wife of over 41 years. It was grueling work, which most of all cost me my wife, plus my job, my career, my health, most of our life savings, and caused significant anguish for our children and grandchildren, Sorry, but no joy or peace…just the destruction of the love of my life.

@IndianaScott

Thank you for the kind words, @DanHinmon

As I reflect back I have to say there was definitely one aspect of caregiving I'd classify as 'hardest' for me. The very hardest aspect was to see my wife continue to decline in spite of my best efforts as a caregiver. My overwhelming feelings of insufficiency often took me to the very brink of my emotional stability.

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No need to apologize, Scott. I am grateful for your brutally honest response. It helps me understand even more what you've gone through. I am so sorry.

@IndianaScott

Thank you for the kind words, @DanHinmon

As I reflect back I have to say there was definitely one aspect of caregiving I'd classify as 'hardest' for me. The very hardest aspect was to see my wife continue to decline in spite of my best efforts as a caregiver. My overwhelming feelings of insufficiency often took me to the very brink of my emotional stability.

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@IndianaScott
Scott, I also appreciate your vulnerability in being able to speak of your many losses with such honesty. Your story is an exceptional one from which I've learned a lot. I am sure it will help others to understand the demands and the losses associated with caregiving. It also helps me to understand the rewards of such a commitment. I understand now why you often close your posts with the words, "Strength, Courage and Peace." You have lived those words.

Teresa

@IndianaScott

Thank you for the kind words, @DanHinmon

As I reflect back I have to say there was definitely one aspect of caregiving I'd classify as 'hardest' for me. The very hardest aspect was to see my wife continue to decline in spite of my best efforts as a caregiver. My overwhelming feelings of insufficiency often took me to the very brink of my emotional stability.

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Thanks for the kind words, @hopeful33250 One of the reasons I came to Connect, and appreciate it so, was because it was a place not frightened to hear the truth about what caregiving means for a significant number of regular folks who truly have to figure out 'good enough' in so many aspects of their lives when they are placed in caregiver mode. Strength, Courage, and Peace for sure 🙂

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