Updated: Mar 7
Let’s be honest
No one grows up with the dream of becoming a caregiver. It’s the sort of thing that lands in your lap. Our loved ones may or may not appreciate the help. They often have a hard time accepting that they need help. And of course we usually don’t want to admit that they need help, until it becomes glaringly obvious.
The truth is that whether the shift comes on suddenly or not, it’s a fundamental identity shift for us, for our relationship with our loved one, and for the whole family. In the McKinsey report on “Supporting Caregivers in Crisis,” Drane makes the point that, “Caregiving can be intensely demanding: emotionally, mentally, financially.”
So for most of us, we would rather call ourselves “Just the spouse/daughter/son/ granddaughter/niece/friend/sister, etc.” Of course we try to take the additional responsibilities in stride, carrying on with our lives, and hoping for the best,
Of course those of us who have been parents or who have taken care of children. It’s a different kind of caregiving that is every bit as intensely demanding as caring for adult patients, one that also carries mental, emotional and physical stresses for years on end.
But while even children with special needs learn and grow, adults needing care may have fixed needs based on a physical condition like a spinal cord injury, or their needs may be variable over time for conditions like cancer or dementia. Our loved ones’ diseases often advance in ways that are unpredictable, so there is a level of uncertainty about how their needs will change over time.
During the pandemic, we have seen that those who do both - the “hero sandwich” caregivers who care for both minors and also adults - are at the greatest risk for serious mental health consequences.
For some of us, there’s a sense of duty that drives us. Maybe there’s no one else, or we feel an obligation to return their care for us, or the expense of paid help may be prohibitive. For others, caring for a loved one in their home is just the right thing to do. Whatever our individual motivations are for caregiving, it’s important to allow ourselves grace and compassion.
We choose each day to step up to love through our actions
There may be moments of rewarding connection for our love and devotion, but the experience is more often about all the ways that we are not enough: I’m not entertaining enough. I must be doing it wrong. should be spending more time. I don’t know what I’m doing. And of course there are the constants of guilt, inadequacy, shame, fear, uncertainty.
Caregivers Intensity Index (CII)
Caregivers are known to be at increased risk for a host of physical health problems ranging from heart disease and stroke to cancer, and mental health conditions like depression and anxiety. And this is hardly surprising, since caregivers experience chronic stress, and often don’t feel they can prioritize self care..
Archangels has created a Caregivers Intensity Index that asks questions about financial burden, unpredictability/ability to plan ahead, disagreements among family, and preparedness for care needs. Depending on how you score on the scale, you are provided with educational articles intended to help you cope. Get your score HERE.
For me, the articles were helpful, but the very idea that such a tool existed was so much more exciting. Because ”there truly is no more foundational element to humanity than to care for others and be cared for ourselves,” as Drane says.
The fact that there are so many of us out there, taking care of our loved ones as a second or third job, means that we care about each other, and that we are choosing each day to step up to love through our actions.
I learned growing up how important it is to present a perfect face to society as individuals and as a family, to hide any weaknesses or flaws. And I’ve come to see that such perfection is brittle because it comes with the need to always be hiding, and generating an ever greater need to hide the disapproval and shame.
We are actually so much stronger when we can embrace our old, sick and weary, and be proud of them. Accepting them and ourselves, as the humans we are. Caregiving is often messy and hard, but the more that we can come out of the shadows to share and validate each others’ experiences, the more that we help ourselves and our loved ones.
Website/platform with goal of reframing how caregivers as seen, honored and supported.