Death By PaperCut: The Hidden Stressors of Caregiving

Long wait at hospitalMy father was rushed to the ER at 2:30 in the morning last Thursday. It was his (and my) second visit in less than a week. He was ready for discharge two hours later and when the nurse said she was going to call an ambulance to take him back to the rehab where he was staying, I told her don’t bother, I will drive him.

My father had only a johnny on his back. No pants, no shoes, no coat (it’s spring in Boston and therefore below freezing outside) and the nurse seemed perplexed. “Find him some hospital pants, wrap him in a blanket and help me get him in the car please. How long until an ambulance could take him, an hour?” I asked. “Probably,” she said. That would be cutting it too close. I start my morning routine – getting me, and my kids, up and out – at 6 a.m. I couldn’t wait.

I understand, I think, why hospital transfers take so long. There’s paperwork, and well, paperwork, and okay, I’m actually not sure why there is so much waiting around involved. But what I do know for certain is that I have the personal fortitude to get woken up at 2:30 in the morning multiple times in one week, dress, grab my healthcare proxy form, and drive to the hospital – all in under 30 minutes; stand up to a surgeon who wants to cut open a 90 year old man (“No, you will not.”); stay by my father’s side while nurses and doctors wash blood of off his feet and hands; and review medication lists at 3 o’clock in the morning. But what I can’t handle? Waiting an extra hour after the excitement is over, while the ambulance company – the same one my father has ridden with two other times that week – completes his paperwork.

Non-caregivers often think that the hard part of caregiving is accepting a bad diagnosis, waiting while a family member is in surgery, or seeing them post-op. They think what’s got us on edge is the actual caring – feeding, bathing, dressing another adult. And absolutely, all of those things are difficult to face and to do. But we are caregivers, warriors actually. We can handle it. Sometimes with more courage than others. Sometimes with more grace than others. Sometimes with few tears, and other times with buckets full. But we manage to do what we need to do.

The Hidden Stressors of Caregiving

But you know what gets us? The things that eventually bring us to our knees or reaching for the wine bottle or box of Oreos, theoretically speaking of course, are the little things. I don’t know who “they” are, but I do know that they say not to sweat the small stuff. Well guess what? It’s the small stuff that has us breaking out into emotional hyperhidrosis.

hidden stressors of caregiving

It’s the insurance companies that have automated phone menus that lead you down a complex route that rarely ends in a live person who can actually help you. Or that require you send a copy of your Power of Attorney via fax. Who the hell has a fax machine anymore? It’s phone companies. All phone companies. The script they use to train their customer service rep helps no one. I remember when my parents first got really sick and I needed to move them both out of their home and to separate places. I kept it together all of that week – through doctor’s appointments, sleepless overnights in the ER, tours of assisted living facilities, and days digging through files looking for important paperwork. But when I called to set up phone service at my mother’s new place, I full on lost it. The hold times. The sing-songy voice of the rep who couldn’t go off script, even when the script didn’t match my questions– that’s what put me over the edge. Who is the god of customer service that decided grown adults want to deal with up-speak when they are ordering phone and basic cable? He was wrong.

It’s the people who don’t show up on time. And I’m not just talking about the doctors –although I will never accept that they can run 45 minutes behind schedule but patients must be on time or risk losing their appointment. I will never understand why their office managers can’t make a courtesy call to let you know they are behind schedule so that you can stay at work an extra half hour, or start a load of laundry, or run an errand. But it’s not just doctors. A friend of mine took a day off from work last week to get her mother’s house ready for her return post knee surgery. She sent me a text at 10:20 a.m. that day. “Waiting on the cleaning people. They were supposed to be here at 10.” Those 20 minutes in the life of a caregiver who is juggling her career, her family, her aging parent, and if she’s lucky, her own needs, are a big deal. My friend was hoping to pack more into that day, because her days off are few and far between.

Also a big deal? Workplace flexibility. I took yesterday as a personal day so I could tour nursing homes. Not only was it a busy day trying to see 6 facilities in one day, it was emotionally grueling. I was trying to wrap my head, and my heart, around the fact my father’s illness has advanced and the place he calls home may no longer be an option for him. I had a report due at work and couldn’t complete it early as I waiting on one more piece of information. So to make things easy and make sure I didn’t miss my deadline, I had the whole thing drafted and ready for me to send from the road. When the information I needed came through, I was planning to drop it into my document and hit send. But when I woke up and checked my email yesterday morning, a coworker, who knew I was taking the day off, had sent me a template overnight for a totally different format. Would that have been a big deal if I was in the office? No. But when you are using every ounce of energy to hold it together emotionally and physically, and when you are finding time to work from the parking lot of yet another depressing institution, the extra effort is grueling.

Lest you think I expect the world to shift to accommodate caregivers, be assured, I do not. For starters, we caregivers often do everything we can to hide the realities of our caregiving so I recognize we make it hard for people to support us. We try not to talk about caregiving because we know no one wants to hear about catheters, or cataracts, for that matter. We try to hide what we do because we know if our managers catch wind that we have complex personal lives they may think twice about our career potential. We try not to make it about us because we are acutely aware society prefers we play the role of a selfless, loving, daughter instead of a person with their own needs.

But if you do know a caregiver, know this: small acts of kindness and consideration can go a long way in helping us care for society’s most vulnerable members. A call to let us know you’re running late, a little pre-planning to avoid last minute projects at work, a smile or a cup of coffee in the ER, they all make a big difference. It’s the little things that knock us down and it’s the little things that build us back up.