Caregiver Wellness: Mind, Body, Soul - Introduction
“…for I give water in the wilderness, rivers in the desert, to give drink to my chosen people,
the people whom I formed for myself that they might declare my praise.”(Is 43:20–21, ESV)
“You’re very anemic…anemic enough if you lose any more blood you’ll need a transfusion”. The curt, yet concerned voice from my doctor on the phone was jarring.
“Anemic??” I replied, a little dazed.
”Yes, you need to start iron supplements three times a day immediately, and we are getting you scheduled with a gastroenterologist as soon as possible.”
My labs just 7 months earlier were completely normal, so I suppose this was reason to be alarmed. For several months I had noticed increasing fatigue. I had tried to step up my exercise routine, but found myself becoming more and more out of breath, even dizzy, during minimal exertion. It had gotten bad enough that I couldn’t complete simple household chores, like moving sprinklers around the yard, without feeling I was about to pass out.
My initial fear was that I was having heart issues. There is a history on my father’s side of heart disease. My aunt experienced a major heart attack and heart transplant in her early 50s. I had already alerted my doctor to this in my previous annual exam and we had taken some preliminary tests to verify my heart health. Everything there seemed A-OK.
But the anemia… what was causing that?? I had a sinking feeling I knew, and it was something completely preventable and fixable.
During our season of full time in-home caregiving for both of Tina’s parents, the load of managing that care, navigating a new full time role in my work as a people manager, and doing all of that in the midst of the COVID pandemic was enough for me to develop some new stress-related GI issues. In truth, not uncommon among men of my age, nor among people living with persistent, low level crisis. I had decided the discomfort of getting it fixed was greater than that of living with it. That was my mistake. And unfortunately, not an uncommon mistake for both men (in general) and caregivers who are sacrificially giving of themselves 24/7.
The passage from Isaiah above speaks of God’s supernatural provision for people in desperation - refreshment for those weary from labor and the burdens of life. However, what’s implied in this passage is action on the part of the receiver. Often, God will lead us to the source of water, but we have to “dig” a little in faith. There’s a step of obedience and trust involved. Just as the thirsty and angsty Hebrews with Moses had to trust (as did Moses) that striking a rock with a staff would unleash a spring of water (Exodus 17:1-7).
The truth is, in my situation, the Lord had “showed” me the path to wellness in my caregiving journey, multiple times, but I often made excuses why I didn’t have the time or energy to follow. And no surprise, here I was now almost a year out of the caregiver journey, and my body had not “righted” itself. In fact, the problems had become much worse. There is a phrase well known in the PTSD care realm - “the body keeps score”. While not truly PTSD, Tina and I have long been convinced there is a phenomenon that affects informal family caregivers I refer to as “PLCD” (Persistent Low-grade Crisis Disorder). It’s definitely not a true clinical definition, but there is an ongoing, unrelenting kind of crisis mitigation stress that caregivers experience.
What are some indicators? Every time the phone rings you have a fearful wince as you anticipate bad news, a call from the nurses station (if you have a loved one in nursing care or memory care), or a doctors office or bill collector blindsiding you. You can’t take a shower or go to the bathroom without feeling the need to rush as this is typically when crises happen and you are unprepared (this happened to me many times, and no doubt the onset of some of the GI troubles). And perhaps even more common: sleeplessness, depression, migraines, extra weight gain (or loss), high blood pressure, anxiety, and even panic attacks. Tina and I, as well as many other caregivers with whom we’ve interacted, experienced these and maybe more.
The Alzheimer’s Association recently released the following statistic: “In 2023, unpaid dementia caregiving accounted for 18.4 billion hours of care in the United States, valued at an estimated $347 billion. This level of care can be physically, mentally and emotionally demanding — with over 70% of dementia caregivers reporting high levels of stress while managing care.”
The Lewy Body Dementia Association also released a statistic from a survey study of LBD caregivers, reporting that over 80% of LBD caregivers feel isolated and alone. Living with persistent low-grade crisis while feeling isolated and alone is recipe for developing all kinds of chronic physical, mental, and even spiritual health issues. That’s why I’d like to devote the next several blog entries to “Caregiver Wellness”, and how to pursue and maintain health of mind, body, and soul.
I feel fortunate. My issues were correctable. They could have even been corrected much earlier (and at much lower overall healthcare cost) had I heeded God’s self-care guidance and taken care of myself in the midst of our caregiving challenges. Some caregivers are not so fortunate. Some fall to heart attack, anxiety disorder, diabetes, lowered immunity, and sometimes premature death.
And while these statistics and our personal experience is specific to caregivers of dementia, I want to call out the fact that informal family caregiving comes in all kinds of flavors and sizes. While each has its own set of challenges, all caregiving shares the common denominator of “caregiver burden” - the very real emotional, physical, psychological, and spiritual toll experienced by people caring for the needs of others with dependencies and disabilities.
While some of these may be specific to Alzheimer’s and dementia caregivers, the following caregiver health resources are applicable to anyone wanting to maintain wellness in the midst of their caregiver journey:
The Caregiver Magazine - “Stay Healthy Checklist”
The Caregiver Action Network - “10 Tips for Family Caregivers: Balancing Caregiving and Self-Care”
Alzheimer’s Association - “Be a Healthy Caregiver”
Well Spouse Association - “When to Say No” (excellent article)
We’ll look at suggestions and encouragement from these and other resources in the next few blog entries. Until then, grace and peace to you as you serve with compassion and kindness, as you prioritize your wellness in the midst of that service, and as you experience “rivers in your wilderness”.
