Anguish and anger.
Constant worry. Trying not to let it show.
Caring for a chronically-ill loved-one is difficult and demanding.
And most of us don’t have mentors to help us to figure out how to do it sustainably.
As a result, most caregivers end up relegating their own needs to the bottom of a too-long list.
Because the needs of a healthy person don’t rate compared with what’s happening for someone who’s chronically ill. Right?
Your needs as a caregiver
Any needs, if repressed for too long, find ways to express themselves.
When they finally bust out, they can do damage to relationships.
Suppressed needs can also seriously harm your health.
In my last post in this series Self-care for Caregivers, I describe how I ended up getting sick after years of caregiving.
Knowing that you need to take care of yourself as a caregiver is the kind of advice it’s easy to agree with. And easy to ignore.
After all, how can you, as a caregiver, prioritize your needs when they seem trivial compared to the pain, uncertainty and illness your loved-one is living with each day?
There aren’t enough resources to go around when someone you love has a chronic illness.
But as a caregiver, you still deserve some of them
By ‘resources’ I mean all kinds: time, energy, compassion, space and money.
Caregivers sometimes add pressure to an already stressful situation by trying to find an ideal state in which their needs take the appropriate amount—no more and no less—of the resources available.
Accepting that there just aren’t enough resources to go around, and that balance is probably impossible to achieve, can (paradoxically) free you from the added anxiety of trying to find equilibrium in a situation in that’s inherently chaotic.
It’s enough to know that some of the available resources need to be directed toward meeting your needs. And that it’s your job to make sure that they do.
In a resource-constrained situation, it’s necessary to be really clear about what your most important needs are and how you can most effectively meet them.
To get that clarity, you need to get to know your needs. Intimately.
It’s possible that through the process of getting to know your needs, you might re-categorize some of them as wants. At least for the time being.
But the things that make the cut? The things that really and truly are your needs? They deserve attention.
It’s Your Work
Do your needs deserve the attention of your loved one, even when they’re sick?
That depends, to some degree, on their capacity.
But if they are unwell enough to need you step into a caregiving role, it’s appropriate to assume that when it comes to your needs, you’re up.
Self-organization of the Support System
Susan Silk, who once had breast cancer, created some simple rules for people who care about a person who is having a health crisis. She named it Ring Theory.
The rules of Ring Theory, if followed, enable a support system to organize itself.
Here’s how to use it:
- Draw a small circle and write the name of the person who is unwell inside;
- Draw a circle around that and add the name of the person who is next closest to the person having the health crisis;
- Add additional concentric circles, each time adding the people who come next, in terms of their closeness to the person in the centre of the circle.
The one rule of ring theory is: comfort in; dump out.
Susan describes it as follows: “the person in the center ring can say anything she wants to anyone, anywhere. She can kvetch and complain and whine and moan and curse the heavens and say, “Life is unfair” and “Why me?” That’s the one payoff for being in the center ring. Everyone else can say those things too, but only to people in larger rings. When you are talking to a person in a ring smaller than yours, someone closer to the center of the crisis, the goal is to help.”
Susan has some additional advice for people outside of the centre ring: “if you want to scream or cry or complain, if you want to tell someone how shocked you are or how icky you feel, or whine about how it reminds you of all the terrible things that have happened to you lately, that’s fine. It’s a perfectly normal response. Just do it to someone in a bigger ring. Comfort IN, dump OUT.”
What does ring theory mean for you, as a caregiver?
First, that it is important that there are people in the outer rings that you can seek support from.
And second, that it’s probably not appropriate to seek support from your loved-one when they are ill.
Find the next post in this series The Shadow Side of Caregiving here.