Why caregiving is fatal and what you can do about it
Joe’s beloved wife of 20 years was diagnosed with dementia, a shock to both of them. In the weeks and months that followed, Joe set about to make sure Evelyn was as happy and comfortable as she possibly could be. He woke up early to make her favorite breakfast so he could focus on getting her dressed once she arose. He spent his days caring and correcting and protecting and fell into bed late every night absolutely exhausted.
Joe didn’t know that the love he was showing his wife would ultimately be the worst thing for her, and for him. The doctor had told him the stress was taking a physical toll, told him he needed to change something, but Joe didn’t see any options. One Monday night he fell over on the living room floor and died of a heart attack. Evelyn watched him die, and now lives in a memory care facility where she rarely gets visits from anyone she knows.
This story is as common as it is tragic. Many caregivers end up dying before their loved ones because stress is fatal.
There’s a famous 1999 study that showed caregivers have a 63% higher mortality rate than non-caregivers. According to Stanford University, 40% of Alzheimer’s caregivers die from stress-related disorders before the Alzheimer’s patient. Another study shows 70% of caregivers over age 70 die first.
Caregiving is fatal if you don’t take care of yourself. So what’s a caregiver to do?
In my work with caregivers, the very first principle we discuss is this: your primary job is not to take care of your loved one, it’s to take care of yourself.
Yes, this means you must find space for more self-care. But more than that, it’s a new way of thinking about everything you do as a caregiver. Decide first what you need to do for yourself to be functional and well, and then fill in your time with caregiving responsibilities. The gap – anything that you can’t fit in after taking care of yourself – either needs to be delegated or simply eliminated.
When it’s a life or death issue, we quickly learn to prioritize what’s truly important.
Years ago I was complaining to a business mentor of mine that my to-do list was too long, that I couldn’t get everything done. He said I need to choose my top three priorities every day, and once I get those done I can focus on other things.
“But you don’t understand … I have more than three things that absolutely have to get done every day!”
It doesn’t matter, he reminded me. Choose the three things which, if you died tomorrow, would have been most important for you to have done today.
If you really love the person you’re caring for, taking care of yourself is not optional. It’s mandatory, and the longer you wait to take care of yourself the more likely it is you’ll leave your loved one without anyone to help at all. Choose the top three things that need to happen each day, including at least one thing to take care of yourself. There are services and maybe even family members or friends who will pitch in to take care of the rest if you stop doing everything and ask them.
If you truly don’t have time to _____, it’s time to let ____ go. If you can’t take mom to her annual physical without skipping your yoga session, either reschedule her physical or find someone else to take her.
Self care isn’t selfish, it’s an act of love. If you’re not here anymore to support your person, who will be?
It's Not a Bank Anymore
On a recent trip to Chile, I was looking for just the right coffee shop to have both a great cup of tea and a strong wi-fi connection to do some work. I scrolled through Google and found the closest one, a “work café,” and the description sounded perfect. Except that the rating was low, only 2.9 stars.
I scanned the comments trying to find out what was wrong with this place. Was it a poor wi-fi connection, weak coffee, or maybe stale pastries that inspired the low rating for this café?
I can’t make deposits here anymore, I have to go two blocks away to deposit checks.
All banks are scoundrels.
It’s so inconvenient, they only have one ATM and no bankers.
This particular café sat in a building formerly occupied by a bank. The bank had moved down the street and opened a café in this space. The Santander Work Café. But person after person complained that the café was not a bank.
I couldn’t stop giggling at the absurdity of rating the café based on frustration that it was no longer what it used to be. And then I realized this is exactly what I do in my life.
When my flight is scheduled to leave at 5:07 pm, then the flight gets cancelled and I can’t get another one until the following morning, I complain to myself that the flight isn’t leaving at 5:07 as I expected it to. The reality is my flight no longer leaves today.
Complaining, even to myself, about what used to be the schedule for my trip does one thing: it takes me out of the moment, makes it virtually impossible to enjoy my evening and opportunity to read a good book, watch a movie, maybe just sit quietly for an hour or two and find some rest.
The same thing is true for many of us when we become caregivers. When a loved one develops dementia, has a stroke, is injured in an accident, develops cancer, things are not what they used to be. Imagine giving your mother 2 stars out of 5 because she no longer recognizes you. None of us would do that.
And yet I change the ‘rating’ for my situation because it is no longer what it used to be. I no longer have the same relationship with my mother. I don’t have the same mother.
My husband is not the same, he can’t even remember my name much less do the sweet things he used to do for me. My mother used to love cooking more than anything, it brought her so much joy, and with her Parkinson’s she can’t cook anymore, it’s so sad.
Comparing how things were before to how they are now is a recipe for unhappiness. Every. Single. Time.
It’s natural and human to compare things to what they used to be. At the same time, resisting what is true now does not help me embrace or enjoy today. Pining for what used to be, for what I expected, only gets in the way of experiencing well-being. The moment I accept that mom can no longer cook, I’m open to discovering what might bring her a little enjoyment now, in this new chapter.
When I can’t change what is, I have the option to make the very best of it. Even when it’s something I would never choose, like my mother’s younger onset Alzheimer’s.
I can either focus on the relationship I wish we had and who she used to be, or accept who she is today and find little ways to make these days the best they can be. As I learn how to do this I’m more and more able to ‘rate’ my life based on the way things are rather than the way they used to be.
Are You a Caregiver?
Are you a caregiver?
Last year I went to visit Jane, my college friend who moved to Florida to help her sister and nieces while her sister was in and out of the hospital with mini strokes. Jane had bags under her eyes, new wrinkles on her forehead, and was clearly exhausted. And she felt guilty for feeling that way because her sister was the one who was struggling.
Over dinner, we started talking about the resources I was creating for caregivers and suddenly her eyes opened wide. “I am a caregiver!” Tears flowed from her eyes, and she quickly shared that they were tears of relief. She finally understood what she was feeling, why she felt heavy and overwhelmed so much of the time. The realization that she was a caregiver was a transformative moment for Jane.
What is a caregiver?
A caregiver is anyone who supports another person through a difficult time, often medically.
Why is it important to know if someone is a caregiver?
More than 43 million Americans have provided unpaid care to an adult or child in the last 12 months alone. Forty-three million people who are caregivers, most of whom don’t even realize they’re caregivers. They think, “I’m just helping out … my spouse or my parent or my friend.”
How do you know if you’re a caregiver?
One of the biggest signs you are a caregiver is if you’re worn out, stressed out, losing sleep, feeling guilty. If you feel those things and you’re supporting anyone through a difficult time, including dementia, cancer, disability, or another ongoing challenge, you’re a caregiver.
Once you realize you’re a caregiver, you can find and make use of resources to make the journey a little easier.