for those who give and need support
Hello my dear,
Caregivers. The people whose hearts are broken when life comes apart. When I got sick, it took me a while to realize that I wasn’t alone in this. There were so many people around me who were carrying me, and frankly, sometimes they got tired too. Yet the work and advocacy and scheduling and meds continue. We’ve made this resource page with you in mind. I hope that these videos, podcast episodes, and blessings will be a comfort to you as you carry so many thankless burdens that you can’t put down. Yours is a love that sticks.
blessed are we
for whom the call to loving action is still strong,
whose every urge is to keep going, keep working,
and not to count the cost.
and yet blessed are we,
beginning to notice that we are slowing down, inexplicably,
or just pausing, staring for no reason,
or starting something,
but then quickly turning to another demand.
blessed are we,
realizing that we are beginning to lose the thread.
blessed are we who say
I really can’t keep going like this,
at this pace, under this weight,
and also, the momentum is so strong, I can’t stop.
God, come and be the hands that sit me down
and keep me there long enough
for me to really feel what I feel,
and know what I know.
come and be the wisdom
to find the support system that is broad enough,
kind enough, effective enough to meet the needs that are here
– both mine and theirs.
come and be the peace that frees me
to let my hands lie gently open awhile,
the grace to just receive.
seek the rest you need, and a little bit more.
it is a sacred space.
Be the first to know when we release a new resource like this one.
A Note to Caregivers
There’s not enough language for being right up alongside pain. But sometimes we find we need a lot less language than we thought and instead we just need somebody who can just be close to us, regardless of whether they have the right words.
I hope this video gives you some ways to care for those you love who are going through something terrible. Tragedy creates huge ripples in all of our lives, so bless you for living up close.
Created by Allison Breininger, The Negative Space shines light on the realities of caregiving, provides direct services to caregivers, and educates and equips those who support them with concrete tools and strategies. Allison has been caregiving for her husband since 2010 and has experienced firsthand that caregivers are in the negative space: vital yet overlooked and unsupported. Fueled by what she saw, Allison created The Negative Space as a way to use her experience and skills to change the way caregivers are seen and supported.
Courageous Parents Network is a non-profit organization that orients and empowers parents and others caring for children with serious illness, by providing resources (videos, podcasts, and printable guides) and tools that reflect the experience and perspective of other families and clinicians.
The Ring Theory
The person primarily affected by a diagnosis or suffering is at the center of the ring and there are concentric circles around them in an ecology of care. Where do you fit into that ecology?
a blessing for care-giving and care-receiving
Sometimes bodies or minds come undone
and you are carried by a caregiver (often literally).
Whether you wanted this or not,
you have been given the great gift of a Witness Bearer
(or Med Tracker or Insurance Battler or More-Ice-Chips-Please Fetcher).
But other times,
you haven’t found a partner.
Or you never married. Or they left.
Or your person died.
Or you feel like a burden to ask for the help you need.
Husband documents caregiving journey for wife with cancer to make others feel less alone
Jay and Katherine Wolf:
For when you live with the enduringness of recovery, caregiving, and care-receiving
Worthy of Boundaries
For when you need help managing your limited capacity
Mark Lukach: True Believers
For when you need acknowledgement that your beautiful love is not without a cost
For when you are the caregiver for your adult child and need community
Heather Lanier: Whole and Holy
For when the world doesn’t love and understand your child like you do
If you are a caretaker, consider this:
1. You might not be the person who is suffering or sick but this is happening to you too. You are caught in the ripple effects of this tragedy and so much love. You juggle the physical, emotional, financial, logistical needs of your loved one. AND you also need to take care of yourself because this crisis could last longer than you hope. So take time to consider what you need? Today? In the next month? In the next year?
2. Caretaking everyday can cause emotions to get tangled up in duty. Though your job is to care and offer comfort, you can not fix what has happened. You can’t find a cure. You can’t heal broken bodies. You cannot change what has happened. Take a moment to consider if you are caretaking to offer comfort and presence? Or are you caretaking on a mission to find a cure, or relieve some guilt, or trying to make it better in a way you simply cannot? Or maybe some of all of the above?
3. Caretakers need to be taken care of as well. Who could you ask to be in your network of support? Who can you talk to about your feelings, struggles, needs, frustrations? Who might be able to understand what you are going through? If your usual network of friends have fallen away, maybe it is time to dig deeper. Do an internet search for caretaker support groups near you. Check out caretaker groups online like the National Alliance for Caretakers or The Negative Space or look for more specific groups like a support group of caregivers for people with dementia or Alzheimers. Remember: You are not alone.