Time to get a bit uncomfortable, friends. I apologize in advance.
If I were giving a presentation to a room full of women on this topic, a room I knew contained spousal caregivers, I would get everyone out of their chairs and have the caregivers form a small semi-circle in front of me, with the rest of the women forming a larger semi-circle around them. I’d probably make them sit on the floor. I would apologize for the dusty floors and inevitable sleeping legs.
Let’s pretend that’s the setting. Caregivers in front, cross-legged and feeling a little vulnerable and hedged in, with women of Christ surrounding them. Make sure you’re in the right group, please. This is a safe space… tears shed and words spoken here will not be broadcast beyond this moment.
I’d pull up a chair, sit down and lean forward so I could make eye contact with you. Each of you.
And to the spousal caregivers I would say:
There are going to be days when you will want to run away. When your only thought is escape. Days when your heart beats near out of your chest, and your anxiety is so astringent you can taste it. Days when you can barely focus, and the thought of going home feels impossible. Days when there isn’t another ounce of strength and, because the strength is gone, the caring has vanished.
This is going to happen.
Maybe it hasn’t yet, but it will. And it’s okay.
There is a significant body of research explaining the fives stages of grief: shock, anger, denial, bargaining, acceptance. While less publicized, there are also several variations on the stages of caregiving. While the stages of grief can be cyclical or fluid, moving between and within the stages unpredictably, the stages of caregiving often follow a very specific path.
After Confusion, Shock, Searching and Denial, we reach the fifth stage: Engagement. Some refer to this as warrior mode or hero mode. This stage often lasts the longest, depending on the illness of the spouse. In this stage, we accept that the medical diagnosis wasn’t wrong and launch into an unsustainable mode of living: I am woman, hear me roar. We can do it all. We will be the best caregiver. We will be patient and understanding and compassionate. We rarely ask for help because we’ve got this. We’re in the best position to care for our spouse. No one else could possibly care for our spouse like we can. We’re invincible.
This stage is typically the longest, and can last years, depending on the rate of progression for our spouse’s illness. The duties of caregiving may be minor at first, but may eventually morph into a full time job. Soon after, isolation and exhaustion set in. Emotions common in this stage are anger, loneliness, determination, and jealousy toward those who have normal lives.
I say to you again: there will be days when you will want to run away.
Warrior mode is unsustainable. Living in isolation is damaging. Your frequent inability to sleep is inadequate to support the demands your unexpected life is placing on you.
I want you to understand today that when that desire to run away springs into your heart, you are not alone. We get it. We’ve been there. Once I even went so far as to map a trip to a not-too-distant city and check out the price of a 3-day hotel stay. I didn’t actually leave, but that desperation within me was so strong that I was very nearly willing to act on it. To disappear. To flee the pressure. To sleep.
I want you also to understand that when running away feels like the best option life has for you, you have moved from Engagement to Crisis.
According to an online article: “This is the most critical stage for caregivers … exhaustion – both physical and mental – begins to take its toll. The caregiver’s emotional state becomes fragile and they wonder how much longer they can survive. The caregiver often feels guilt for wishing the ordeal would end. This stage lasts until the caregiver gets help.”
We don’t much like the word crisis. Personally, it makes me feel weak. Inadequate. Pathetic. We over-personalize the idea of being in crisis as a character failing. We are flawed and useless. We should be able to handle this. We made vows. We are not in crisis. We still love him. We are committed, damn it.
And here’s the worst part about crisis stage: we can’t dig ourselves out. We can’t. We’re in too deep. We’re too exhausted. We’ve been hanging on by a fingernail for months now, and it’s time to let go.
Look around you. The women who form the outer circle, they’re the ones with the shovels. They’re going to lower a ladder and help you climb out. They’re going to step into the gap, and you’re going to let them. You’re going to hate it. You’re not going to be able to articulate needs at first, and, if you’re anything like me, you’re going to cry a lot. You’re going to feel incredibly overwhelmed when the help that you’ve been resisting for months (years?) arrives. It’s okay. Your circle has you. It’s their turn now.
To you women in the outer circle, you’re up. She’s not going to be able to tell you what she needs, because honestly, life is utter chaos right now. At this point, because she is in crisis, the ability to articulate specific needs is going to be near impossible.
Here’s a fairly comprehensive list of what a spousal caregiver in crisis needs:
1. Someone else to encourage their spouse. Encouragement is a very feminine word. Women encourage women. Men take men for beer and talk about sports. It doesn’t matter what you call it, her spouse needs it and she needs someone else to organize it.
2. Sleep. This may seem impossible to provide, but believe me when I say making this possible for her is easier than you think. I’ve fallen asleep at small group, at work during lunch, on a friend’s couch. She invited me over for coffee, threw a blanket over me and I was gone.
3. Daily burdens lifted. Show up. Deliver meals. Vacuum. Do her dishes. Clean her bathroom. Wash her sheets. Grab her groceries. Mow her lawn. Walk the dog. Crisis is debilitating… overdo your efforts to help right now. She needs it. She won’t always, but right now, it’s everything.
4. A safe space to voice her anger, fear and anxiety. You may not be able to provide this, but you can (firmly) encourage her to find that space. A therapist or counsellor is likely most qualified for this. Again, it doesn’t have to be for a lifetime, but there must be an exploration and release of thoughts and feelings that are crowding her mind and driving her mad.
5. Someone to check in. This can be a text. A call. Drop a note on her Facebook wall. Just check in. Open a door to listening. She’s not always going to feel like she can leave the home, but maybe she needs a few minutes of distracting chatter. Maybe she needs a laugh, a shoulder, a vent. Maybe she just needs to hear you’ve been praying. Send her a picture of a Bible verse you’ve been reading. Send her a funny meme. Keep a line of communication open for her.
As a caregiver transitions from Crisis to Acceptance, life gets a bit brighter. She is better able to articulate what is helpful. Her self-care improves. She is able to restore friendships and reconnect in meaningful ways. It can be a long, slow transition, but typically in the Acceptance stage there is less isolation, more connection. The two half circles join, and the blending of needs and provision are less of a burden for everyone involved.
To those of you desperately wanting to run away: I know, sweetheart. I know. Empathy is carved into my very bones on this one. Wanting to run away means that you are the middle of desperate, hopeless crisis. It does NOT mean you don’t love your spouse. It does NOT mean you’re a terrible person. It does NOT undermine everything good and wonderful you’ve been in your role as wife and caregiver up until now. It does NOT make you irredeemably selfish.
Wanting to run away means one thing: you need help. You need to be surrounded and supported the way you have been surrounding and supporting your spouse. Let them help. Just let them help.
Brennan Manning, in his book The Ragamuffin Gospel writes, “To be alive is to be broken. And to be broken is to stand in need of grace.” Be the visible hands of grace, my friends. We’re all alive, all broken, all bound up in the immeasurable grace of God.