Notes To Myself

Moving Through Worry, Searching for Calm

Lisa worked as a high-tech Business Transformation and Change Consultant while acting as a primary caregiver to her mom on an 18-year journey through dementia. Now she is a writer, an activist, and a dementia caregiving survivor focused on empowering caregivers to survive their own journey with grace. Unlike most of our Q&A style stories, this is an essay written by Lisa sharing the caregiving tools and methods she picked up along the way.

As told to Open Caregiving and lightly edited to enhance readability while preserving the author’s voice.

Getting to know the caregiver

Hi, I’m Lisa B Capp. My story is simply one of survival; survival over the guilt, sadness and overwhelming responsibility faced by those thrust into the role of caregiver for someone with Alzheimer’s or other dementia related diseases. I am one of you and these are the lessons I learned as a caregiver.

Finding calm in our daily rituals

Attempting to balance our lives between career, children, community and personal passion can easily be toppled by a diagnosis of dementia within a family. Why? Because stepping into the role of primary, supportive or even long-distance dementia care with a loved one is a job most would never strenuously pursue.

Loss can be paralyzing, no matter how it manifests. However, being there for a loved one through a terminal disease that robs life’s precious memories seems the cruelest of all. We’re human. We celebrate life. We fear illness and decline when they enter our consciousness.

Dementia care partners find inescapable reminders of life’s fragility in moments of care. It’s critically important to draw introspection and balance into our daily rituals, within the chaos often found in dementia.

Grappling with feelings of success and failure

“I wish I didn’t feel like such a failure,” a sentiment often expressed by family members supporting a loved one. Family caregiving can be charged with a lifetime of emotional baggage built up over years together. Is it possible to balance thoughts of failure with thoughts of success? Can we find truth in Japanese proverbs like, “Success is falling down seven times, but getting up eight?” Or Winston Churchill’s perspective that, “Success is going from failure to failure without losing enthusiasm.”

Success and failure are complex emotions often jumbled up among those of courage and fear. Courage is not the absence of fear. Courage is feeling fear, fearing failure but still stepping into the void where success could be attained. Successes can be large or small, because in the world of dementia the definition of size requires a very different yardstick.

Do you strive for perfection in your care role, like you might in other aspects of your life? Do you punish yourself when you fall short of the unrealistic goals that have been set? When you stumble, does your inner voice encourage you or does that voice judge you? Simple exercises can help you look inward in an attempt to balance complex feelings around failure and success in care.

It’s called “jotting”

Grab your phone, iPad or go old school with a pen & paper. Write down random thoughts about what triggers you to feel like a failure.

  • What was the situation?
  • How did it make you feel? What did it stir up for you?
  • Briefly how did you respond – in word or in action?
  • What are you most proud of that you did in the moment?
  • What do you regret most about the situation?
  • What could you consider doing differently?

It’s important to just “jot,” the object of this exercise is not to keep an extensive journal. Perpetually jotting down “in the moment” perspectives can force behavior patterns to emerge, allowing you to step back and consider them later, hopefully without judgement.

Upon initial inspection you’ll likely find anger, impatience, selfishness, disgust, sadness and total vexation. These are difficult emotions to acknowledge about someone you know and love. Don’t judge them, they are more likely a manifestation of your feelings of powerlessness, loneliness, exhaustion and guilt. Simply acknowledge the patterns, then move on to design strategies that can help you and your loved one live safely and more effectively through the care journey.

My mom experienced an array of terrifying delusions and hallucinations through her early stage dementia. I was petrified by the unknown consequences of each pending delusion. The worst of her delusions were offset by a recurring and mostly joyful one of falling in love after my dad’s death. I tried desperately to bring mom into my reality from any of her many delusions. It wasn’t until I put aside grief over my dad’s passing to ask mom about her new boyfriend. Only then could I begin to see my 80-something mother’s beaming smile as she shared exciting plans of her wedding to the doctor who didn’t exist.

Boundaries create balance

Boundaries are critical to recognize and to understand for care partners who support loved ones with dementia. Although we are often advised to enter their reality, we also need to keep ourselves firmly planted in our own. Some balancing strategies you may find helpful:

  • Just let go: You may pride yourself on being the best at winning debates, but you often cannot “win” in the dementia world. Unless it is a safety situation, suspend your need to fix, flatten or finalize. Learn to just let go before escalation ensues.
  • Desensitize from your emotional triggers: Figure out what triggers you. Is it a phrase, a facial expression, a gesture that opens old wounds or simply the guilt and anger found in seeing your loved one struggle? Pick a short phrase you can easily remember. When you feel pressure building, close your eyes and calmly say that phrase over and over as you follow your breath in and out slowly. Don’t stop until you can actually feel your shoulders drop back into place. Others may not even notice you’ve checked out for a bit and you’ll gain a moment to reclaim your composure. This won’t work in a severe case of chaos, instead you’ll need an exit strategy necessary to break the tension for all.
  • Forgive yourself often: Caring for a loved one with dementia can ultimately be a long and exhausting journey. Although there promises to be moments of great fulfillment, there will be moments of excruciating tension, too. Remember, in moments of tension, it’s the disease and in moments of lucidity, it’s your loved one. Learn to recognize, trust and treasure the moments of lucidity you find together.

Personal survival strategies for dementia care partners are essential to maintaining health and stamina. Well-executed strategies can ultimately give you strength to keep going. Many studies show that stress leads to higher mortality rates in care partners than those not in a care role of the same age.

Where to find Lisa B Capp

Learn about Lisa’s writing, activism and other caregiving work on her website

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