The physical manifestations of grief in caregivers are unexpected and pervasive. That, in a nutshell, is what God has been teaching me since the death of my mother on June 23, 2023.
Mom’s suffering was great during her final 2 years on this earth. My siblings and I had no desire to prolong her life through medical intervention. We rejoiced when her suffering ended. Her funeral was a celebration, a sharing of memories, a gathering of extended family who loved her and supported us. We wept, we hugged, we said our goodbyes, and my siblings moved on with their lives.
I tried to do the same. A few weeks after Mom’s death, my husband and I packed our new camper and headed west for a much needed vacation. On the second day, we turned around due to truck trouble and prayed as it limped all 500 miles to our home.
Soon after our return I started limping due to foot pain. The foot pain moved into my leg and then into my hip. During this time my uncle, who was like a second father to me, died. In mid-October, physical pain landed me in bed. From there I limped to the doctor’s office, was diagnosed with a pinched nerve, given a cortisone shot, and started physical therapy.
In an attempt to spare you the details, here’s a pared down timeline of life from then until now:
November and December 2023: Physical therapy, physical therapy, and more physical therapy.
December 2023: Pinched nerve better, bursitis causes by pinched nerve exercises worse.
January 2024: Physical therapy relieves bursitis, but pain from iliotibial band (IT band) increases
February 2024: Traditional physical therapy ends, myofascial release physical therapy begins.
March and April 2024: Nasty sinus infection requires 2 rounds of antibiotics. Myofascial therapy slowly and steadily reduces hip and leg pain.
May 2024: Third round of antibiotics ends sinus infection. Leg and hip pain ends mid-month. Activity level normal by month’s end.
Image from @minkmingle on Unsplash.
Why am I telling you all this? Because chronic grief is part of caring for children with disabilities and special needs, though they may be healthy and well. You may be experiencing the physical manifestations of grief in caregivers due to lost dreams, of milestones not reached along with age peers, of your future empty nest. My desire is to support you by explaining ten strategies that helped me as my body insisted on receiving extra attention and care.
Tell health care providers that you are grieving. Some will discount the information, but some will factor your emotions into treatment. In my book, their responses outweigh the others.
Surrender your situation to God. God knew that putting me flat on my back and unable to move without pain was what my Energizer Bunny personality needed to surrender. I’m grateful for his wisdom because with my surrender came the peace and patience and trust I lack on my own. May God do what he knows is needed for you to surrender, too.
Cancel stuff. I had to cancel non-essentials like a 3 week Texas camping adventure in January with my husband. I also had to cancel essentials like virtual classes I was to teach, speaking engagements, and more. God used those cancelations to teach me to trust him to make up lost income. He also taught me humility––the world kept turning just fine without me. He will teach you important lessons as well.
Do what you can. As in whatever your condition allows without causing further injury. For me that meant preparing easy meals when I felt like it, doing physical therapy exercises daily, walking until the first twinge of pain returned, reading to my grandchildren as they snuggled beside me in bed, and joining my family for meals––even when I had to stand at the island while they sat at the table nearby. Doing what you can do is good for your body and soul.
Enjoy what you can. Recovering in bed for hours each day meant I finally had time to indulge in favorite activities and not feel guilty about it. I journaled about my mother, read voraciously, caught up on several TV series, and watched movies. What activities can you indulge in to heal you body and heart?
Set goals and hold onto them lightly. My physical therapist and I set goals each month as a form of motivation. Some goals we met, some we didn’t, and some we revised. One goal was to travel to and speak at Key Ministry’s Disability and the Church Conference in Orlando, Florida in early May. I was willing to use a wheelchair while traveling and speaking if need be––it was a disability conference after all! As it turned out, a wheelchair was unnecessary, though I used the elevator as stairs were still hard to negotiate. So set goals as a form of discipline to move you forward. Adjust goals as necessary to give yourself grace.
Ask for help and small adjustments. Driving was out of the question for a long time, and my husband was a patient chauffeur. My daughter (We live multi-generationally with her family. We live in the first floor apartment of our house. They live in the bottom level.) and I take turns cooking meals. She brought meals up to us for months since I couldn’t do stairs. Being intentional about asking for what you truly need help with and nothing more is crucial. By doing so, you maintain as much independence as possible and avoid unnecessarily wearing down others.
Try alternative treatments. A friend I trust recommended myofascial release therapy. I had never heard of it and waited to set up an appointment until my regular physical therapist said he’d done all he could. Everything I read about myofascial release therapy assured me it was non-invasive and wouldn’t cause further harm. My husband and I decided it was worth the risk, and it proved well worth taking. Before you start an alternative treatment be sure to research it, talk to people you trust who have gone through it, and consider the risk factors. Schedule treatment only when and if you feel the possible benefits outweigh the risks.
Celebrate baby steps. We do this with our kids, right? Why not do it for ourselves too? I celebrated being able to drive short distances, no longer needing to take Aleve for pain, being able to sit through church comfortably, meeting daily walking goals and more. Whatever your baby steps forward are, no matter how small, celebrate them!
Weep tears of joy. Throughout this last year, I have found many reasons to be joyful. Beautiful sunrises. Knowing that Mom was reunited with Dad and no longer suffering. Notes from friends. The prayers of our church small group. Our church’s interest in developing a disability ministry. Hugs from grandkids. My husband’s servant heart. And so much more. In this year of vulnerability and surrender, I weep often for the joy and beauty God is pouring into my soul.
Jolene Philo is the author of several books for the caregiving community. She speaks at parenting and special needs conferences around the country. She’s also the creator and host of the Different Dream website. Sharing Love Abundantly With Special Needs Families: The 5 Love Languages® for Parents Raising Children with Disabilities, which she co-authored with Dr. Gary Chapman is available at local bookstores, their bookstore website, and Amazon. See Jane Dig!, the third book in the West River cozy mystery series, which features characters affected by disability, will be released in October of 2024.
