Caregiver guilt. If you’re one of those caregivers who feels bad that you can’t get everything “just right,” join the crowd. And if you’re a former caregiver whose loved one is no longer here and you wish you’d done some things differently—that’s a congested space, too.
Just take a look at a few of the titles of articles that poured onto the screen when I searched for “caregiver guilt”:
- Caregiver Guilt: How to Stop Feeling Guilty About Elderly Parents on AgingCare (by Carol Bradley Bursack, of Minding Our Elders)
- “Dealing with Caregiver Guilt” from Today’s Caregiver (free subscription required for article access)
- Dealing with caregiver guilt and forgiving yourself from Homecare.com
- Caregivers: Living With Guilt from the American Association of Retired Persons (AARP)
- Guilt: Dealing with the Monkey on Your Back from Family Caregivers Online
- Caregiver’s Guilt: What it is, and What You Can Do from SeniorsMatter.com
Caregiver guilt is a common emotion I often hear from others, and something I’ve experienced myself at times. In the many years that I cared for my mom, do you think there are things I wish I would’ve done differently? Of course there are. I’m only human and so are you. Which is why we both should embrace the sentiment on a pillow I once gave Mom that still hangs in my study: “Leave your shoulda coulda woulda at the door.”
I know, that may be easier said than done.
But I just want you to realize that if caregiver guilt is something you’re struggling with, you’re not alone. And I believe there are lots of dynamics that influence what that looks like. The following are just a few.
Caregiver guilt and the timing of caregiving
Since I was a hospice nurse for many years, I’ve seen all kinds of caregiving scenarios.
Sometimes an individual has been chronically ill for an extended time—in such cases, the caregiver involved has had more time to adjust to the changes that caregiving brings. They also may be worn and wise enough to be more realistic about what they expect from themselves.
In contrast, the caregiver who is suddenly thrust into a caregiving role by an acute illness/injury or the unexpected news of a poor prognosis doesn’t have the opportunity to “adjust” to anything gradually. Instead, their world is turned upside down and they may suddenly find themselves responsible for meeting someone else’s needs nearly or actually 24/7.
Since they aren’t (yet) as worn and wise as the chronic caregiver, there may be all kinds of unrealistic fantasies about white horses and saving the day.
Caregiver guilt and the setting of caregiving
The setting of caregiving can play a big role in caregiver guilt—especially if a loved one isn’t where they (or you) think they want to be.
- Maybe they’d like to move in with you, but it’s just not possible.
- Maybe they have moved in with you and would rather be at home.
- Maybe they live at home and refuse to budge even if budging seems the better option.
- Maybe they reside in a facility and everyone is wishing they could be together instead.
- Or maybe they’re on the other side of the country and it’s not possible to move closer to one another.
Regardless of which scenario applies, one thing often rings true: most older adults would prefer to maintain their independence and not need caregiving support at all. When they do, figuring out how and where they’re going to receive it can create some dicey dynamics for everyone involved. That’s why it’s important to do so as a team—with your loved one as the captain, if possible.
Caregiver guilt and the relationship of caregiving
Caregiving dynamics are also highly influenced by the nature of the relationship between the caregiver and care receiver—which will usually be quite different if it’s a parent; or a spouse; or a sibling; or an adult child; or other loved one.
In my hospice work, I’ve watched lots of couples dance the same relational dance during illness and caregiving that they’ve been dancing throughout the years they’ve been together.
Sometimes that’s good, and sometimes not so much.
The same can be true of adult children who are taking care of parents, and siblings caring for one another.
Caregiving doesn’t happen in a vacuum. Instead, the dynamics the caregiver and care receiver have had all along will be coming along for the ride, too.
In that context, I’ll offer one caveat: serious illness also influences things, too. I’ve seen some pretty crusty characters soften and embrace new priorities with the progression of disease—and that includes both caregivers and care receivers.
When that happens, it can lead to rich and meaningful dynamics within the caregiving season that emerge like treasure that’s been waiting to be discovered all along.
Caregiver guilt and the partnerships of caregiving
I know, “partnership” sounds like such a formal term. But what I’m referring to is that another component that may influence caregiver guilt is the amount of support the caregiver has (and accepts) from others.
That may be adult children who are helping a parent care for his or her spouse; siblings who are working together to care for an elderly parent; or caregivers who have none of that support—but can count on friends, neighbors, and a great healthcare team instead.
Why? Because having the partnerships of others within this season gives the caregiver others to talk to; objective perspectives to consider; the opportunity for respite; and the chance to celebrate their loved one with someone else.
Plus, even though their loved one tells them what a great job their doing—or may not express appreciation at all—it’s nice for caregivers to hear someone else tell them how wonderful they are.
My journey with Mom
When I get a twinge of caregiver guilt about this or that, I remind myself that I was doing the best I could with who I was at the time. My mom knew that and appreciated my efforts—regardless of what they looked like at times.
The same is true for you. Regardless of how your loved one has responded to your caregiving efforts—with gratitude, criticism, or indifference—remember you’re doing the best you can.
And if you’re looking back and dipping into that wishing well of regret about something, cut yourself some slack. What matters is that you showed your loved one how much you loved them simply by giving it your best effort in the context of your situation at the time.
If you haven’t had the chance to visit the articles in the intro to this piece, I encourage you to check them out and read from some caregiving sages about how you can best deal with your caregiver guilt.