According to reports from the National Alliance for Caregiving and AARP, approximately 43.5 million Americans provide unpaid care for an adult or child. That’s over 20% of the general adult population in this country! The Baby Boomer generation represents the largest group of unpaid caregivers today.
With illnesses that have no sustained treatment or cure, millennials are next in line as caregivers if they aren’t already serving in that capacity to grandparents diagnosed or parents with early onset conditions like dementia and Alzheimer’s disease.
After diagnosis an illness normally plays out in stages. I think about the arc of my mother’s life as college sorority sister, to wife, mother and career, through my father’s passing, followed by her 18-year dementia journey and, ultimately, her death.
A caregiver’s life plays out in stages, too. I had a career that took me to clients around the globe and my husband had a demanding job. We enjoyed friends, were engaged in our community and, although we had no children, had settled into a fulfilling life-after infertility. It was in the midst of my so-called life that my mom came to live with us and I learned about being a care partner.
In situations like ours, caregivers are encouraged to stay healthy and to focus on their well-being in addition to the well-being of those in their care. What we may never fully appreciate in caregiving is that our well-being isn’t just the absence of physical disease. Well-being is a complex combination of physical, mental, emotional and social factors.
What is fundamental to our health is the link we have to happiness and satisfaction within our lives. For caregivers supporting a loved one with a debilitating illness, happiness and satisfaction can be elusive concepts in the day-to-day act of caregiving. This is especially true with illness that encompasses several stages or can span many years.
By accepting well-being as a state of mind, we could feel more control to take small steps after diagnosis. When trying to answer the question “what’s possible” consider the following:
Don’t judge what you are feeling:
From initial denial and detection through diagnosis and the various stages of decline, your feelings will vacillate wildly. A care partner takes a distinctly different emotional path than someone diagnosed with long-term illness. Whether directed at yourself, your family, your friends, your job, the medical community, fate or the world, what you feel can lead to a sense of shame or embarrassment. Accept your feelings and move on without judgment.
Avoid the stigma trap:
Stigma can surround debilitating disease and be a recurring challenge for caregivers and those diagnosed. Common reactions result in holding the diagnosis secret in an attempt to protect your loved one and yourself. Reminders that you are facing one of the most difficult challenges the universe can hand you are necessary as well as finding ways to let others in who will ultimately provide support and assistance.
Live life in small measure and find inspiration in the moments:
There’s no denying your world turns upside down following a terminal diagnosis. Early stage might require little change or simple accommodation while the later stages of disease can be devastating. Jot down what you see and feel, those moments in which you’re proud and those you would like to do-over. With calm reflection, patterns may emerge putting your world into a bit of perspective. You might see ways to manage difficult situations together and reset your state of mind on a more constructive path.
Unite together against disease to live your best lives:
Partnering after diagnosis takes extraordinary commitment for caregivers, because someone we care deeply about is declining. And living with disease after diagnosis requires incomprehensible determination to move forward. Whether it's physical, emotional or spiritual, surviving a significant diagnosis is damned difficult for all. Honor yourself as you honor your partner for what can prove to be a long journey.
Speaking ‘out loud’ about your hopes and fears in a wake left by serious diagnosis is essential. Clarifying your initial goals together then ‘re-goaling’ as necessary is fundamental to living life as fully as possible, for as long as possible. Thinking in small measure will allow you to redefine goals as your caregiving situation evolves.
To learn more about Lisa B. Capp and her work on caregiving, visit www.lisabcapp.com.