Looking at mom, from across the room, I realized she’d been lying to me. For starters, everything was NOT “okay”. With all of our focus on dad and his declining health, we’d lost touch with the woman who bore the brunt of caring for him day-in-and-day-out. It’s wasn’t physical issues she was concealing. It was fear, anxiety, frustration, and a whole boat-load of other emotions that were now so near the surface that just by looking at her you could see it in her eyes, posture, and the way she was pursing her lips.
Mom is not “okay”, as she’ll politely and sometimes emphatically tell you. It had only been 2 weeks since I’d last laid eyes on her, and these things had not been visible. Not like this.
Living 2 1/2 hours away, I’m a long-distance caregiver. Sure, I drive home to be there and we talk daily. My brother and I have a system to support things like having the lawn cared for, accompaniment to doctor visits and helping with house cleaning…when mom will let us! And, routinely we encourage mom to take breaks. She goes to lunch with her friends on a routine basis and lays down while dad is in bed.
But, this did not seem to be your usual load that respite or arranging for services in the home would cure. This was something much deeper.
Mom’s always been the doer and carer. Every birthday, from our very first through current times, she bakes a cake and provides birthday candles for us to blow out! Her brand of love is through doing. She’s tended to always put her needs last and it appeared she was really now silently suffering.
Getting her aside I asked, “Mom, do you want to go for a ride with me?” Her answer, “I don’t know if I can”, meant this wasn’t going to be very easy. After a bit of coaxing, we were backing out the driveway on our way to grab a cup of coffee somewhere other than at home.
With the usual battery of questions of, “Are you okay?” and “How can I help you with things around the house?”, she looked me squarely in the face and said, “No”. Hhhmmm. What did that mean? “I can see that you look sad or tired or both”, I started again. “I am”, was her response. Not very forthcoming!
Letting silence fill the space between us, she said, “Have you seen your father and how he sleeps in his chair with his mouth wide open?” I nodded. “He looks like he’s dead”, she said. Then going on to say, “I can’t stand looking at him”.
Mom confided her fears and sadness, in having to watch dad change from the man he’d been to the one he is now. Death, she shared, is a big fear of hers. She also fears living without the man she’s been married to for 58 years. And, lastly she admitted to her fear of not knowing how she felt about God and what comes next. Mom’s role of primary caregiver was placing her smack dab in the front row seat of having to confront her mortality, dad’s and her relationship with God. Mom’s crisis was of a spiritual nature.
Rarely are any of us trained in how to deal with spiritual hurt, doubt, or fears. Frankly, the topic of faith and spirituality are often the least discussed topic of all between people. And, living a distance away makes it more challenging, because the topic is not one that’s easily had over the phone.
I don’t have all the answers, for sure! But here is what I’m learning:
- Be patient. Regardless of the geographical distance, be patient. But if you do live out of town, there is a tendency to want to understand and get it resolved in the short period of time you have face-to-face with them. Trust me. It doesn’t work that way…and it can cause them to shut completely down on you. Patience is required.
- Recognize You May Not Be the One They Will or Can Accept Support From. I get it. In my own spiritual periods of drought, I like to talk with others who’ve been through similar struggles. Not always easy to find, unless friends or family have previously shared with you that they’d gone through struggles of this type. Sometimes the faith community can help, through programs, activities or one-on-one conversations. If counseling is needed, that is also an excellent form of support. Hospice and palliative care support also provide much needed spiritual support to families.
- Do not preach. They are not looking for you to set them straight on theology. They know deep down what they believe. Preaching will push them away.
- Pray. Pray for them. Pray with them. Even though mom didn’t want to talk with me much about her beliefs and where she was in doubt or afraid, when I asked if she would say a prayer with me…she agreed. Trust in prayer.
- Nourish their body and soul. If bodily exhaustion or other physical issues are in play, help them get relief. Feeding their soul may mean less direct actions. Plant seeds. Think of what’s been spiritually important to them in the past. You know, things like interaction with nature, talking of things for which you are grateful, uplifting music, movies that have a soulful theme, go to church and for my mom, asking her to go with me to confession was very effective. There is power in asking for forgiveness to close the gap in your relationship with God.
Have you encountered struggles of the soul in your own family caregiving experiences? What lessons did you learn? Share them here. We’d all love to hear and learn more.