What do you do to help a family caregiver?
Is it just a matter of getting their loved one to stop acting out, and then the caregiver will be OK?
Not hardly. Chronic impairments are not resolved quickly, and caregivers must strive towards healthiness and strength while caregiving – and beyond.
What does that look like?
Where is safety or solid ground?
That’s what our radio program is all about. Caregivers suffer from what I call the three I’s. We lose our independence, identity, and become isolated. Every caregiver goes through this and loses themselves in someone else’s story. Constantly talking about someone else and not what’s going on with you isn’t healthy. Think about the last time somebody asked how you were doing. How did you respond? Did you start talking about your loved one?
Maybe you replied, “Well, she had a bad night,” or “he’s not doing very well,” or our situation is this,” or “we did such and such.”
When’s the last time you spoke from your own heart?
How’s that working for you? Are you able to express yourself?
That’s the first step, and why I ask every caller to the show, how are you feeling?” Not because we base this on feeling, but because I want to start the conversation with the caregiver speaking in their own voice.
I’ve done this for a lifetime and learned painfully that we, as caregivers, must regain our identity or perhaps discover it for the first time.
I’ve learned as caregivers, we have to stop being isolated. We must push back against isolation, gain independence, and regain our own agency. Taking control of our own actions, our own thoughts, our own words, our own deeds. And this is how we push back against this. Isolation is crippling. I had a call with a fellow just the other day, and he was talking about how isolated he feels as he cares for his wife and what it does to. And I have spoken with different family members of children with special needs and what happens when they’re isolated …because other people and even churches don’t know how to respond, how to welcome, how to connect, how to even what he would say. And this show is all about helping caregivers develop the vocabulary to understand what help looks like and then hopefully inspiring each of us to ask for that help. And then the third step is already to receive that help.
Our program also provides a “caregiver vocabulary” to pastors, counselors, doctors, financial planners, or other service providers that interact with caregivers. My wife, at one point – her pain management folks just threw opioids at her. They were punching above their weight class weren’t thinking this through. And I didn’t know enough to understand my own danger. Not one pharmacist, doctor, or nurse ever pulled me aside and said, Hey, dude, we’re putting massive amounts of behavior-altering chemicals into your wife’s body. You might want to get some help for yourself!
Nobody ever said that to me.
And this went on for several years.
And we as caregivers require that clear direction to safety – today. Right Now!
Currently, I’m in the middle of this journey myself again – in an acute situation in the hospital – as Gracie recovers from her 82nd surgery.
Well, what does help look like for me?
Many people say they are caregiving experts, and I look at them with a raised eyebrow. They took care of an aging parent for a couple of years. The parent died, and now they’re caregiving experts. They bill themselves like this, so I comb their sites looking for something that they could say to me that I haven’t already heard a bazillion times or that applies to where I am.
Many of them offer caregiving tips, and those are vital. I want you to have tips. I need tips and can always learn stuff about dealing with the system and nursing-related tips and things like that.
But that’s not what keeps me awake at night, and that’s not what causes me to hang my head with weariness and despair. My fists don’t clinch in impotent fury due to the lack of caregiving tips. Fear, guilt, grief, obligation, and resentment are what tears apart my heart, and I have found the hearts of virtually every caregiver I ever met. It doesn’t matter what kind of excellent skills we have at wound care or fighting an insurance company or whatever else. None of that matters if your heart is a train wreck. And guess where the greatest resource is in dealing with our heart?
Everything we face as caregivers on a heart level is covered in scripture. Now I’ve looked throughout scripture and found no place discussing a guy caring for his disabled wife for thirty-five years through all these surgeries and multiple amputations. That’s my life, but the Bible contains no story describing that. Yet, from beginning to end of scripture, there is a myriad of places that talk about fear, guilt, resentment, despair, anxiety, stress, and more. For example, I went back to the psalms and looked at them in this new light. When I saw Psalm 23 – and I first saw it as a kid, one of the first things I ever learned in scripture – but looking at it as a caregiver, I saw, “Yeah, though I walk through the valley of the shadow of death, I will fear no evil for what they are with me.” I realized that’s the key for us as caregivers is that we are not alone in this – in that valley of the shadow of death can often be a long, long valley. But he’s not leaving us; He’s equipping, strengthening, and fortifying us to do this.
That’s the message of our radio program. We are not alone – and there is strength for the journey ahead.