A loved one receiving a diagnosis of dementia prompts a multitude of responses. One surprising but consistent message I hear from families I’ve encountered over the years has been, “above all the challenges, I wouldn’t trade this experience of caring for my family member with dementia for anything.” Family members refer to the family care journey as one filled with learning, connection, and growth. 

And while it’s a journey that can offer much gratification, there is no doubt that it’s also a challenge, one that often leads to caregivers becoming overwhelmed and even sick themselves. So the first question to ask ourselves is, how can we feel our best and do our best in supporting ourselves and our loved ones? In other words, how can we be certain that we are fit for duty? I would encourage us all to begin at the beginning, with ourselves.

Self Care is a Prerequisite for Family Care

I was reading a popular family caregiving book recently and was shocked to notice that “self care” didn’t appear until chapter 17. Chapter 17? By chapter 17, that self care horse is likely out of the barn. Months or years of role overload and compassion fatigue can squash any intentions of self care, so make sure you build self care into the process from the beginning. Despite cultural messages to the contrary, self-care is our duty, our ethical responsibility in order to care for ourselves and others in our circle. You know the phrase, “You can’t pour from an empty cup” and only YOU know what fills your own cup. Make a list of what you need to do to keep yourself healthy. I mean it. Get a pencil. I’ll wait…

Two Ears, One Mouth

Years ago, I came across a presentation of the Stages of Family Care which stated that the first stage of family care in adulthood is “Anticipatory Care.” Anticipatory care calls for planful, engaged, information gathering.

One of the greatest gifts anyone can give loved ones is PLANNING. Being able to provide person centered family care requires that we know our loved one’s wishes. I regularly hear that family members, at all stages, aren’t interested, willing, or able to share wishes about their own care planning. If you find this to be the case, gather your circle and share stories. Keep your ears open for preferences and wishes. And please resist the urge to say, “Mom, you’ve told me this story before.” Dig in, ask questions, these are the legacy gifts that you will treasure, the generative narrative of your loved one’s life.

Build In Respite & Daily Uplifts

Create a habit of planning opportunities for daily respite. According to a 2017 study in Health Psychology, “Caregiving respite such as Adult Day Services (ADS) use can provide partial but invaluable relief from daily care-related stressor exposures, which can make family care more manageable and reduce family care health risks. It is probable that more ADS days can shield a greater amount of care-related stressor exposures cumulatively, thus the physiological toll of care is not as severe among carers who utilized ADS to a greater extent.“

That means if you are a caregiver, you need to build in the daily positive events that are associated with improved positive affect. A 2015 study found that failure to keep up a positive mood when facing daily challenges may be associated with elevated inflammation levels. So take advantage of adult day services if you can. Take that walk. Go to the gym. Get the respite care you need so you don’t get sick, but can stay strong and on the job.

Appreciate the Humanity Around You

Sometimes, in our daily round, we become so focused on the instrumental tasks of offering care that we lose sight of our emotional support goals and the moments that can help lift us up. Jens Stoltenberg’s quote elevates the emotional support side of caring for ourselves and others in a way that reminds us that care and connection can change the world. “When autumn darkness falls, what we will remember are the small acts of kindness: a cake, a hug, an invitation to talk, and every single rose. These are all expressions of a nation coming together and caring about its people.” So stay connected to the people, moments and beauty that nurture you.