Ending Loneliness in Caregiving
Other than death of a loved one, few things are more disorienting than making the shift from being cared for by your parents to caring for them.
This transition is made even more challenging because it usually comes as such a surprise. And it’s not just the biologically wired blind spot we have against our parents’ vulnerability. It’s the utter shock that, when it happens, there’s no place to turn for help. It’s like trying to climb a rock face without any toeholds or crevices where you can grab on, and then scaling it without a net.
The problem with our aging system is that even though there’s a lot of information out there to help, the situations most caregivers confront are so incredibly complex, unique and specific (e.g., Why won’t rehab providers accept my Dad?) that they can’t find exactly what they need. Or they want the one exact right answer to a very complex question that doesn’t have right answers.
At a recent conference, a man stood up and asked, “What’s the right place for someone with Alzheimer’s? At home or in a facility?”
“It depends,” is not a great answer but it’s the right one.
And even for information that we all need, most of us don’t get it in time. For example, few people know that older adults’ health insurance (Medicare) doesn’t cover long-term home care, nursing home care or assisted living.
One big problem is that most people enter into this life phase without a community into which they can connect, ask for advice, and share support. And in the absence of shared language and community, the information we find lacks context and usability.
Over the past two years, through Daughterhood Circles, we’ve observed that connection to others leads to empowerment, which is really just the ability to accept your own judgment as good enough.
Here are the five lessons that empowering communities and relationships can teach us about our caregiving journey, and how to get plugged in.
Name The Change
A member of our San Diego daughterhood community said to me, “I was two years into caring for my aunt before I realized…. I am a caregiver. It was only then that I could really get the support I needed.”
Naming the change empowers caregivers to search, find and use resources that can help. Resources that are named for the solutions they provide: “caregiving.” For example, you have to know you’re a caregiver to join the Caregiver Action Network, a great resource on caregiver information and training.
Acknowledge There’s a New Normal
In her book, A Bittersweet Season, on p. 69, Jane Gross explains, (paraphrased here) “Adult children…are hoping against hope that after a brief period of unpleasantness and inconvenience life will return to normal.”
On a practical level, there is real power and peace that comes from recognizing and acknowledging that there’s a new complexity to your life now and that “normal” looks different than it used to. Acknowledging the new normal empowers a caregiver to be the CEO of the situation; to invest in paid and unpaid long-term solutions. They realize that there are no awards for scaling this mountain alone.
Hard Problems Must Be Solved in Community
In the case of the man who stood up at the conference looking for the one right answer to his question, the input of a community could help him weigh the many factors necessary to make the decision.
And to accept that there isn’t a right path. With the power of community to problem-solve, there’s less guilt left at each individual’s doorstep, because community-based problem-solving empowers caregivers to seek good enough solutions rather than perfect solutions. It grounds their decision-making in the broader experiences of a community.
Recognize — “See” — Your Accomplishments
As old ways of doing things die off, new ways always emerge. Caregivers grow when they stand up to an authoritative doctor, set boundaries with siblings, forgive their parents, learn to let go of little things, or to live more in the moment.
This is no small stuff. But we don’t build resilience and strength in a vacuum. We need these changes to be reinforced by people whose experiences mirror our own. Being seen for your work rewards and builds confidence in your ability to handle future challenges. As I like to say to my daughter, “Look at how good you are handling things.”
Laugh, Have Fun and Reassure Each Other.
Our best Daughterhood Circle moments have happened when we’re enjoying each other’s stories– like the hilarious rant one of our Circle members went on about getting her 80-something-year-old mom to stop climbing a ladder to water her plants. This is surely the best antidote to stress and unhappiness after all – just kickin’ back with your friends and taking a load off. Isn’t this what we all need, a context for our lives, and a reminder that it’s not always all that serious?
Get Connected Now
We launched Daughterhood Circles in support of our mission to end loneliness in caregiving. Please participate if you can. If there’s not a circle or you can’t get away, this fall we’ll be launching a web-based community forum to foster connection and community online.
But also, we encourage everyone to check out their local area agency on aging, church groups, local Alzheimer’s Association, libraries, and other groups to connect with people in their area. Ask your employer to sponsor a community of co-workers who can come together to support each other.
You can also connect with other caregivers through social media. If you follow DaughtersUnite, my friend April Koontz will quickly connect you with so many of the other wonderful caregiver bloggers out there, including Elizabeth Beighey Miller of the Happy Healthy Caregiver and Jodi Hempel of the Life: The Next Phase — both of whom, I’m proud to say, are Daughterhood Circle leaders.
Finally, check out this DailyCaring blog: 11 Caregiver Support Groups You’ll Want to Join.
You had your childhood friends and your motherhood friends. Now it’s time to make your daughterhood friends. Always remember, we can do hard things, just not alone.
Being a caregiver isn’t necessarily lonely, but it requires a certain kind of “wiring”, meaning not everyone can or should do it.
Being a caregiver for someone with Alzheimer’s means nothing is about you (when you’re with the person living with Alzheimer’s) and you have to learn to live in their world – which is in that particular moment.
Words may mean nothing to someone living with Alzheimer’s but facial expressions mean everything. So smile, regardless.
As a fulltime unpaid caregiver to my elderly widowed mom for more than 5 yeas now, what I find most disheartening is not just how little support I receive as a caregiver from my two brothers, but, how my mom and I have actually been abused and harassed by them. One would prefer silence and estrangement to harassment. It is mind-boggling to imagine, that people who are your immediate family would actually engage in such misconduct, but they do. I thank God everyday that this situation has not yet resulted in my early death by a heart attack or stroke. I often believe my elderly mom will outlive me. They have everything, my brothers: all the money, their families, their houses, their futures. My mother and I are in a very different boat, trying to survive day to day, in an apartment on a fixed income. It is incredible, the greed, the selfishness, the meanness that my mom and I have suffered. I do not recommend any woman giving birth to sons, based on what my mom and I have experienced.