caregiving and stress…

I don’t write much about being a caregiver because I assume you’re here for the postural orthostatic tachycardia syndrome (POTS) and other health updates and my charming and whimsical musings, as well as my grandiose and delusional beliefs about the level of charm and whimsy with which I muse. And, I generally don’t think of caregiving as having an effect on anything other than my whimsy. I’m starting to rethink all of that.

My in-laws moved in with my husband and I 7 1/2 years ago. They were getting older and didn’t want the responsibility of taking care of a house, like mowing the lawn and changing light bulbs, but weren’t ready for senior housing. They assured us it would be more of a roommate situation – they would do their thing, we would do ours. We each were responsible for our own cooking, cleaning, shopping, etc., but my husband and I would be like landlords and would handle property issues. They assured us they had savings set aside for assisted care once they were no longer able to care for themselves – they didn’t expect or want us to be caregivers. So, we bought our house in October 2015, five months after we got married. My in-laws moved in six weeks later.

Five years ago, my mother-in-law died after a sudden and painful battle with pancreatic cancer that had spread throughout her body like wildfire by the time we found it. She was gone within two months of any signs that something was off – perhaps the one saving grace of a burning flames is the speed with which they advance.

After she passed, caring for my father-in-law became a way of life. He was heartbroken and lonely and began to lose interest in socializing with friends. We didn’t want him to eat alone, so we took over the cooking and other light duties.

Then COVID hit, and our sole focus became keeping my father-in-law safe. He’s elderly, has a few health issues, and doesn’t eat well or engage in physical activities, so he’s extremely high risk. Husband and I became responsible for running all of the errands. We monitored and sanitized every single thing that came into this house, trying to fight against an invisible enemy. It was exhausting.

In the past several years, my father-in-law has noticeably declined. He’s now 81 years old. He stopped driving during COVID, as initially there was no need since we were trying to absorb the risk by running all errands, but now is cognitively unable to safely operate a vehicle. We do the cooking, cleaning, and laundry. We’re his chauffer, personal assistant, dietician, and only social outlet. We don’t yet have to bathe him, but regularly have to instruct him on proper hygiene, like washing hands after using the bathroom and showering. He only showers when we tell him to, and because he has his own en suite bathroom, we often don’t realize he hasn’t showered in a while until we can smell him.

Within the past two years, my father-in-law has developed difficulty swallowing. For most of us, swallowing is an automatic function. You might actively think about it while eating or drinking, but throughout the rest of the day, it occurs in the background. Humans produce between 1/2 to 1 1/2 liters of saliva per day. Because my father-in-law has difficulty swallowing, the saliva builds up and is excreted as drool. This creates small puddles throughout my house, which adds slipping risks to the growing list of concerns we’re constantly monitoring. It also creates an unhygienic hazard, as we discovered earlier this year when my FIL was diagnosed with a bacterial infection, transmittable via saliva, after not washing his hands after using the bathroom. Fortunately, neither my husband nor I were infected, but we had to put on gloves to clean anything FIL had touched. It’s sad and it angers me that his doctors aren’t interested in digging into the cause. Problems with swallowing, or dysphagia, are most commonly caused by strokes or other neurological impairments, yet getting a referral to a neurologist has been impossibly hard, and he has an HMO.

It’s obvious that caregiving significantly affects my marriage. My father-in-law can’t drive, so he only leaves the house when my husband takes him somewhere. Which means husband and I never get to be alone in our house. In the 5 years since my mother-in-law died, husband and I have only been able to spend 6 or 7 nights alone together in our house, and add maybe another 15 that we have been able to spend somewhere else (like on vacation) without his dad. Husband and I can go out to dinner, but we first need to make dinner or pick up takeout for his dad. After working all week and cooking and cleaning in my free time, it’s often easier to just eat whatever we’re already making for his dad. So even when we have plans to go out, we sometimes abandon them for the sake of ease and convenience. Husband and I both acknowledge that our lives revolve around his dad, and that diminishes the time we reserve for each other. It’s not a healthy relationship, and I think we both know our marriage won’t survive without some changes.

Taking care of another human is hard on health, y’all. Taking care of another human who, at best, seems indifferent towards my existence, who has never once in 7 1/2 years asked me a question about myself or attempted to get to know me…honestly, on some days it ruins me. But in all of this, I never realized the impact caregiving has on my health. Recently husband and his dad took an international trip. We knew it would be a challenge for husband to care for his dad while traveling, but we knew this would be his last international trip and wanted him to be able to see his family one last time. I was nervous about being home alone for two weeks. Overall, I’m in a good place, health-wise. I’m still dealing with some unexplained fatigue and an insignificant yet constant pain, but I can generally manage my daily activities without help. But husband’s constant presence is the steady security I need to manage on my own – I know he’s there, should I need help. But if he’s on the other side of the world, all bets are off.

So in the weeks leading up to their trip, I was apprehensive. What if I fainted alone at home and hit my head? What if I was too dizzy to take the dog for a walk or make a meal? What if I had to sit in an ER waiting room for 12 hours and no one was home to take care of the dog? My mind generally wanders down the road of worst-case-scenarios to in order to prepare for any foreseeable obstacles. And I was anticipating them all.

But like most of my catastrophizing, it turned out to be unnecessary. Because – and I don’t want to overstate this – being by myself for two weeks was perhaps the greatest two weeks I’ve had in recent years. It was ahh-mazing. Somedays were hard, for sure, like taking the dog for multiple walks per day on my own when I had an increase in leg pain, or dealing with a shredded flat tire alone on a particularly lightheaded day. But those health events existed in isolation, and not as part of a larger schema where, as a co-caregiver, someone else’s health is always more important than my own. I could actually take note of them and process them, rather than shoving them down into the pit of denial.

For the first 48 hours, I sensed something was different, but couldn’t quite put my finger on it. I had the same low level of anxiety I always have at home, but it was an anticipatory anxiety. I was waiting for the inevitable choking or drooling or blaring tv or any of the other dozen sources of tension that exist at home from day-to-day, only they didn’t come. To be clear, it’s a low level of anxiety. If my stress level were a speaker, it’s rarely, if ever, on full volume. It’s no rock concert, it’s more like a gentle symphony wafting from the speakers. But it’s always on. The stress is never gone and eventually you get used to the symphony. So it took me a couple of days to recognize the sounds of silence. Whatever the opposite of stressed is, that’s how I felt.

The side effects of stress are similar to my symptoms of POTS: tachycardia, elevated (standing) blood pressure, increased adrenaline, and sometimes nausea. Adding stress to my symptoms essentially feels like doubling their severity. When my body came down from the tension and hyperawareness, I found I was able to manage my symptoms much better. I felt somehow lighter. I was less lightheaded, more steady on my feet, and had more energy. I could focus on my salt intake and medications, and without all of the daily distractions, was able to identify a few foods I suspect have been triggering reactions for a while.

Eventually my two weeks alone came to a close, and since then I can feel the volume on my stress slowly creeping up. But we’re trying to learn how to better manage my father-in-law’s health, and hopefully one day soon we will succeed, so I can better manage my own. In the meantime, thank you for letting me vent. Talking about the stress of caregiving helps to lighten it a little.

The price of anything is the amount of life you exchange for it. – Henry David Thoreau

Smell ya later.
– Linds