Today 5.7 million Americans are living with Alzheimer’s and related dementias. By 2050 the number is projected to grow to nearly 14 million. Bracing against the disease, while standing alongside those diagnosed, are family and friends wrapped in an intricate web of perplexing emotion.
Dementia 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.
My life played 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, we’re encouraged to stay healthy, to focus on our well-being in addition to the well-being of those around us. What we may never fully appreciate is that well-being isn’t just the absence of physical disease. Well-being is a complex combination of physical, mental, emotional and social factors.
Question those who partner with or live with dementia and you may be met with the silence or venting that comes from either witnessing or experiencing the decline of the disease. What’s fundamental to our health is the link each of us has to happiness and satisfaction within our lives. This is critically important given that Alzheimer’s and dementia encompass several stages and can span many years.
By accepting well-being as a state of mind, we can feel a bit more control in taking small steps after diagnosis. Three considerations for those living with or partnering with dementia when trying to answer the question “what’s possible after this diagnosis?”
From initial denial and detection through diagnosis and the various stages of decline, what you feel will vacillate wildly. A care partner will take a distinctly different emotional path than someone diagnosed with dementia. 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. Remind yourself often that you are facing one of the most difficult challenges the universe can hand you. Move on without judgment.
There’s no denying your world turns upside down following a dementia diagnosis. Early stage might require little change or simple accommodation while the later stages of the 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 that help put your world into a bit of perspective. You might see ways to manage difficult situations together and reset your state of mind to a more constructive path.
Partnering in dementia takes extraordinary commitment as someone you care deeply about declines through age or illness. Living with dementia requires incomprehensible determination to move forward through an illness that today has no cure. Whether it's physical, emotional or spiritual, surviving a dementia diagnosis is damned difficult for all. Honor yourself as you honor your partner in what can be an ultimately unrelenting dance.
Clarifying your goals together in the wake of a dementia diagnosis is necessary to live as fully as possible, for as long as possible. Thinking in small measure allows you to redefine those goals as your situation evolves.