"There are flutters of anxiety in my gut almost 24/7. I'm permanently on the edge of 'fight or flight,' and my main job is to squash the feelings down as I get on with what needs to be done."
Marc Lawrence is in his fifth year of being a full-time family caregiver, and he decided it was time for a self-assessment.
After pushing down his usual defenses, Marc realized there were three feelings he was battling 24/7: fear, fatigue, and failure. Though he can never make these worries disappear, he's learned to acknowledge and accept them instead of fighting them. "Everything," he says, "is a work in progress."
As I embark on my fifth year of being a family caregiver, I’m taking some time to do a self-assessment.
Nowadays, there's rarely time to consider how I feel or think about what's weighing on me. Every day is dedicated to dealing with the needs of my loved one, raising my daughter, managing the household, and juggling everything else that arises (that usually comes out of nowhere).
Thankfully, I'm not particularly stressed or worried most of the time, but there are flutters of anxiety in my gut almost 24/7. I'm permanently on the edge of "fight or flight," and it takes a lot of effort to squash the feelings down as I get on with what needs to be done.
I've gotten used to this feeling now, but I'm not saying it's a healthy way to live. Always being on edge drains my energy and motivation, pulling me closer to a dreaded burnout. As part of my self-assessment, I figured that understanding what's causing this anxiety issue may go a long way toward reducing it. Properly this time - no squashing down and moving on.
On the surface, there are plenty of reasons to be anxious. The world seems to be in a constant state of anxiety with everything going on in the news. Five years ago, my wife's stroke turned our worlds upside down, too.
But I've dealt with crazy world events (globally and in my personal world) my whole life, so I'm not exactly willing to write this anxiety off as "one of those things."
If I force myself to look deeper and poke into my more vulnerable thoughts, I can see my anxiety is a reflection of three fundamental feelings:
Yes, these three. If it's not all the time, they come up quite a lot. I've learned to deal with the gnawing sensation of fear in my bones and the fixed weariness of tiredness. Well, not "deal." Accept? Tolerate?
It's becoming clear that bearing these feelings as "my lot in life" does more harm than good.
Fear – Sometimes Rational, Sometimes Not
I'm generally not a fearful person. Or, then again, I might be, and I'm just good at repressing it.
However, anyone who's been through a traumatic event or is under unusual - but sustained - pressure will experience some fear. The future is uncertain, even when I perform the same things day in, day out. I can never get comfortable or say, "This is it." It's like I'm always waiting for a disaster or a disappointment.
I have a lot of things to be fearful about, like:
- What if my wife has another stroke?
- Will my daughter emerge from all this as a strong, independent person? Or is everything too much for her?
- Will my health hold out long enough to continue caring for my wife?
- Will I live long enough to do everything that needs to be done?
- Will we always have enough resources to support us?
None of this racks me with fear, but dread nips at my gut constantly. The more I try to push it down, the bigger the teeth get, and nips turn to bites.
I'm meditating (though not as often as I should). I practice mindfulness as often as I can and make sure I have things to look forward to in the future. But there's no escaping the fear entirely.
What helps most is recognizing it and embracing it. When I realize the anxiety isn't caused by too much coffee or irrational thoughts like "What if a meteor hits the house?", I stop. I take a deep breath, reflect on something positive, and calm my nerves.
It's not easy. But saying to myself, "You're feeling this, so acknowledge it. Accept it. Then tackle it," is much better than saying, "I don't like this! I don't want to feel this way! Ignore it!"
Everything is a work in progress.
Fatigue – Always Present, Difficult to Resolve
I'm tired of complaining about being tired. I've never been able to adapt to fitful, broken sleep. So, when I'm battling a variety of stressors, as I usually am, the fatigue is overwhelming.
General sleep advice is unhelpful. I've tried doctors, peers, and the internet, and the tips are usually the same:
- Go to bed earlier
- Take naps
- Drink chamomile tea
- Sleep in a separate room from my wife
- Avoid caffeine and alcohol
These aren't bad tips per se, but none of them have solved my problem. I feel permanently sleep-deprived, and it's hard to make peace with. Nothing will help me catch up with the sleep I've already lost.
I go to bed at the same time every night (albeit very late). I avoid caffeine and alcohol before my allotted sleeping hours, and I use a CPAP machine (most of the time) to address my sleep apnea. These practices help me get enough sleep to last through the day, usually with a short nap in the afternoon.
What they don't fix is the emotional side of exhaustion. It's as real - and sometimes worse - than the physical burdens of fatigue. Caregiving means I'm working 24/7. I'm always on call, there is ALWAYS something more to do, and every day has some kind of "unexpected event" of varying annoyance and severity. Try as I might, there is no way I can control every aspect of my life.
Instead, I try to accept it and deal with it the best I can. I feel like I'm always running away from burnout, so I snatch at every rare opportunity to take a break.
Failure – Lurking Around Every Corner
I think of myself as a competent, capable person, and I usually don't worry about having significant failures. However, as I age and the fear and fatigue take their toll, I'm likely to make mistakes.
Caregiving presents ample opportunities to mess up. Sometimes it's not a big deal, but at other times, it can be life-threatening.
I bundled us all in the car the other day, and we headed off to one of my daughter's school events. When we got there, the school was like a ghost town. As we waited for everyone else, it hit me that we'd arrived an hour early.
Oops! No harm done - we managed to laugh it off, and the event went well. But a nasty little voice inside reminded me that errors like these were typical of chronic fatigue and lost focus. That day, a "brain fart" was no big deal, but what if my next is when I'm putting my wife in the bathtub? Or if I'm preparing her medications? An overdose or underdose could have catastrophic effects.
Losing focus or touch is a serious concern, though I know everyone makes mistakes. I try to soothe the worry by double-checking what I'm doing, ensuring I'm "present" in the moment, and by setting reminders. All of my wife's durable medical equipment is checked regularly for faults. I avoid taking any risks that could injure my wife or myself.
Most importantly, I try to show myself compassion when something goes wrong. I can't control some things, others I can, but no one is perfect. If I burn dinner or skip my wife's shower because I'm feeling wobbly, I vow that I won't beat myself up.
I want everything to be perfect, making it hard to accept anything less. But refusing to make compromises is the highway to misery. It's time to let things go.
Fortitude is the answer!
Fortitude is good old-fashioned grit. It's defined as having the strength of mind to bear pain, adversity, and danger with courage.
People regularly ask me how I do everything I need to do. My go-to answer used to be a snarky, "Well, what choice have I got?"
A better answer would be, "Over time, I've managed to develop a lot of grit." The stuff I've faced during my lifetime is certainly not as traumatic as some. Every day, people are losing everything to natural disasters and war. They lose loved ones without any warning. A doctor diagnoses them with a chronic or terminal disease.
When I'm feeling tired, sore, and stressed, acknowledging my luck in life can get tricky. We all have our demons, and knowing that many have it worse doesn't make my load any lighter.
But I realize I still have my loved one and daughter in my life. I'm well enough to keep going every day. And there are people less fortunate who need my help.
A family caregiver's life is a marathon. It's tough to wrap your head around someone else's pressures without having run a mile in their shoes. Yet, though family caregivers can't swap lives with someone else, we can educate others about our daily expectations and responsibilities.
Don't be a person who suffers in silence. Be a proactive person who asks for help, can express their needs, and remembers to breathe. Help others help you when you can. And, once again, BREATHE.
NOTE: The information presented is solely for educational purposes, not as specific advice for planning home care. Please consult with a professional who can apply best practices and appropriate resources to your situation.
NPS-ALL-NP-00602 JUNE 2022