I didn’t want to learn hard caregiving lessons in 2023. Mainly because I’m a big fan of easy. Hard? Not so much. Yet here I am waiting for 2023 to end—believe me, I’m ready to put it behind me—and at the same time embracing the hard lessons I’m about to share with you as precious gifts.
From @andsmall on Unsplash
My entire life, literally since I was two years old, has revolved around caregiving. Therefore I assumed I was prepared for the challenges our family faced after my mother was diagnosed with dementia in 2008. That assumption proved correct until January of 2023 when Mom entered hospice care. Over the six months leading to her departure from this earth, advocating for her was all encompassing. I didn’t want, nor did I have time to learn hard caregiving lessons. With each passing day I became more grateful for how they drew and are still drawing me closer to God. And so, I want to share them with you.
The why of caregiver grief is the same, though the who and what may be different. All grief is a response to loss. Young parents grieve the loss of children gone too soon or the losses related to their child’s disability. Growing children grieve what they don’t experience because their parents live with disabilities or because their parents were lost to disease. Adult children grieve as their elderly parents lose their independence, personality, and function. The universality of loss among caregivers can make us more empathetic toward all caregivers.
Caregiving is hard on the heart. We can’t escape the loss and grief we and those in our care are experiencing. These emotions are ever present and can lead to despair unless we acknowledge and process our emotions. So find someone to talk to––a spouse or friend or counselor––to keep your heart from breaking.
Caregiving is hard on the body. Lifting, bending, sitting in uncomfortable chairs at a loved one’s bedside, sleeping in recliners at a hospital and other aspects of caregiving take a toll on the body. The emotional stress inherent in caregiving and grief can also impact physical health. Even if you try to care for your body, it may become sick to make you get the rest you need. When you need rest, humble yourself and do the unthinkable: ask others to take care of you.
Caregiving is worth it. Caring for a child, a spouse, or an elderly parent can deepen and enrich relationships with others. Shared trials lead to shared trust and commitment between people. Through caregiving we also sense Jesus and his strength in us. The small sacrifices we make for loved ones lead us to marvel over Christ’s sacrifices for us and all his children.
God is in the little things. I’m still unpacking what my grandson said a few months after Mom died. He held up Snuggle Puppy, a stuffed animal given to Mom at Christmas while she resided in a nursing home. “I don’t want it,” she grumbled. “Give it to your grandkids.” My now 8-year-old grandson said, “Stuffy’s my favorite because he came from Great-Grandma Dorothy. He helps me remember her until we meet again in heaven.” I marvel at how God is using an inexpensive stuffed toy and a grumpy great-grandma to display his loving kindness and truth to a little boy.
Take pictures. You will be glad for every photograph of the loved ones––young, old, or in the prime of life––in your care.
Tell stories and write them down. Pictures capture the outer person. Stories capture the inner person––heir character, priorities, heart, humor, and soul. Telling stories is good. Writing them down is better so details aren’t lost when memories fade.
Suffering before death is often harder than death. My siblings and I watched our parents decline for decades. Dad’s illness spanned 38 years. Mom’s lasted 15 years. His was longer: hers was more painful. As their ends neared, I found great comfort in the hope 1 Corinthians 15:55 gives to those who know Jesus waits for them beyond the veil: Where, O death, is your victory? Where, O death, is your sting?
Stay close to those who’ve known your loved one long and well. These divisive times have fractured and ruined too many relationships. Do all you can to maintain relationships with those who were part of your loved one’s life. Forgive. Ask forgiveness. Show grace. Seek grace. This will enable you, when God calls your loved one to him, to wrap your arms around others and grieve well together.
God is faithful. He shows up in cheap stuffed animals, in an old photo sent by a high school friend, in a hospice nurse, in stories you’ve forgotten and others have remembered, in relationships healed, in tears, in loss, in prayers, in a devotional sent by your church, in cards, and through the still, small voice God delivers to your broken heart. He is faithful. He is faithful. He is faithful.
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, was released in August of 2019 and is available at local bookstores, their bookstore website, and Amazon. See Jane Dance!, the third book in the West River cozy mystery series, which features characters affected by disability, was released in October of 2023. The audioversion of Book 1, See Jane Run!, was released in November of 2023.
