Two months before his death my husband said, “Honey, you can live without me, but I can’t live without you. You’ve got to rest more.”
His words were true. I have a nursing background which helped me know early on that I would have to make hard choices and pace myself in order to walk well through what lay before us.
I cut out or limited anything and anyone who drained me excessively. I stopped all in home entertaining except for a couple of very close friends and relatives who were supportive without adding to our stress. I encouraged my husband to do what he enjoyed even though I agonized as I watched him struggle. I watched a lot of old westerns so he would not feel guilty about “sitting around doing nothing.” I wish I could sit through another old western one more time…
In rare private moments, I wrote for therapy – something I’ve always done, a hundred or a thousand words here and there. I used social media to stay connected and to ask for special prayer support. I continued my radio program. Thankfully, my recording studio was in our home and all interviews were done by phone. I had lunch with a friend or close family member once or twice a month. I prayed. I walked. I breathed.
If you’ve ever been horribly stressed, especially as a caregiver, then you know how easy it is to clench your teeth and hold your breath and tighten muscles that beg for relaxation as you watch your loved one suffer. So regular, deep, smooth breathing patterns matter.
I planned occasional outings (short rides and occasional meal out) for my husband and me according to what he could tolerate. We never went to crowded restaurants. We practiced Covid infection protocols before Covid was ever heard of. I carried hand cleaner and alcohol wipes everywhere. We wore masks when it was wise.
Still, my husband died in 2019. He lived as long as he did, in part because I researched a lot. Research was huge for us, a matter of life and death. It kept my husband alive and functioning much longer than he would have lived had we just blindly trusted medical professionals. There were numerous medical errors, and wading through them while maintaining a healthy and intelligent rapport with medical providers was challenging.
At first, we thought he had ALS (Lou Gehrig’s Disease), but it turned out to be a combination of an unusual presentation of Myasthenia Gravis, Pulmonary Fibrosis and major cardio-pulmonary issues tied to his exposure to Agent Orange in Vietnam. We relived those early postwar years. It was hard…
I say “we,” because it was “we” who suffered. While he died and I lived, I still suffer from so many aspects of his illness and death and how it all unfolded. Caregivers always wonder if we could have done more as we grieve deeply and feel our loss every waking minute of every day after the one we have loved departs.
We need to figure out how to keep living well as we go along. We must make time for ourselves. It’s important to resolve to breathe, to connect with nature, to walk outdoors whenever possible, to still be you. All are choices. Don’t be a martyr. You matter, too. I’m one of the lucky ones whose loved one kept me reminded of that.
MaryJaneHolt.com / REACHtoTOUCH.com
“Not by might, nor by power, but by My Spirit, saith the Lord.” – Zechariah
Mary Jane Holt retired early from the nursing profession to “just write,” a career change that would lead to:
~ a long-running, award-winning newspaper column,
~ 12 year publication of a community health magazine,
~ several books and workshops, and a truly rewarding broadcasting career with a world outreach.
MJ has received numerous awards and honors for her inspirational writing and health education efforts. Today, as a radio host, motivational speaker and dedicated encourager, she still sometimes aspires to “just write.”
MORE CAREGIVING Information:
Caregiver’s Corner Newsletter
I invite you to join my author friend, Tracy Crump’s monthly newsletter for caregivers. Here’s her information.
Caregiver’s Corner shares short stories of joys and heartaches along with tips now and then to help you survive this season and even make sweet memories. Together, we’ll cheer and encourage each other through the caregiving journey.
Link to subscribe to Tracy’s blog
Tracy Crump knows from experience the burdens caregivers shoulder after caring for both her parents and her 100-year-old mother-in-law. A former ICU nurse, Tracy dispenses hope in her award-winning book, Health, Healing, and Wholeness: Devotions of Hope in the Midst of Illness Twenty-two of her stories have appeared in Chicken Soup for the Soul books, and she has published hundreds of devotions, articles, and short stories in diverse publications such as Guideposts books, Focus on the Family, Woman’s World, and Ideals.
Toni Stevens says
That devotional by Tracy sounds wonderful. Wish I had had something like that during the 5 years+ I cared for my parents prior to their deaths. I don’t regret one second of that time and am so grateful God answered my prayer to be there when they both took Jesus’ hand and left here. However, it was the hardest thing I’ve ever done and I’m sure I didn’t care for myself as I should have during that time. It’s tough when feeling guilty that you aren’t doing enough. That guilt can come from self or the ones you are caring for. This will make a great gift and web site a great resource for my caretaker friends.
Loretta Eidson says
Toni, I couldn’t have said it better. I don’t regret caring for my parents and my now-deceased husband. But it was the most challenging, most exhausting thing I could have done. We press through; they leave us, and then WHAM! Guilt’s ugly head pops up and tries to make you think you could have done more. Thank you for sharing.
Tracy Crump says
You’re so right, Mary Jane. I’ve often noticed that we all experience guilt over something we did or didn’t do whenever someone we love dies, but it seems to multiply exponentially when we were the caregivers. You mentioned some great self-care tips, too. I love that you watched old westerns with your husband. Thank you for sharing your caregiving journey.
Veronica Mckall says
My grandma who has been Lou Gehrig’s disease for 2 years at the age of 75 had all his symptoms reversed with a herbal medicine from healthnaturalcentre . org after undergoing their herbal treatment plan. God Bless all ALS Caregivers. Stay Strong, take small moments throughout the day to thank yourself, to love your self, and pray to whatever faith, star, spiritual force you believe in and ask for strength. I can personally vouch for these remedy but you would probably need to decide what works best for you.
Loretta Eidson says
Veronica, That’s great the herbal medicine worked for Lou Gehrig’s disease. So many people are resorting to herbal medicine these days. Yes, caregivers need to find quiet moments during their day.