What Having Pneumonia Taught Me About Caregiving

What’s it like to be old?

You probably don’t really know. One of the challenges of caring for older adults and people at the end of life is that you haven’t yet been in their shoes. Sure, you’ve been a teenager before, navigating the stormy seas of adolescence, and you’ve been a young adult trying to find your own way in the world. You may know from direct experience what it’s like to have an addiction or an eating disorder or suicidal thoughts.

But you haven’t been ninety yet.

Of course, no matter who you care for, you cannot assume that any of your direct experience is the same as what your client is experiencing. This kind of countertransference can be unhelpful and even harmful. But helping professionals spend a lot of time developing empathy. You imagine what life is like for your clients. You draw on your own experiences and the experiences of your family, friends, and clients, looking for some inkling of what they may be going through. Then, you use that understanding to shape what you do and how you interact with your client.

That’s why I’m grateful I had pneumonia.

Okay, maybe not entirely grateful. I got the flu, and after a couple of weeks, it turned into pneumonia. I spent the second half of January really sick, and most of February recovering. That part wasn’t fun. Still, two fever-wracked weeks in bed, three doctor visits, four prescriptions, endless coughing, and many sleepless nights later (all while continuing to care for my two young children and keeping my business running), I’m pretty much back to normal. I definitely am grateful for that. (And going to the gym has never felt so good!)

I also learned a few things from this bout with pneumonia, about how similar illnesses might affect my older adult clients. Here’s what I learned:

1. That level of fatigue is no joke.

I’ve written before about the extreme fatigue that comes with the sleepless nights of caring for a newborn baby. When I don’t get enough sleep, I can’t think straight and I can’t seem to shift out of irritable mode. Then with my body feeling so tired, a task that’s usually easy, like carrying a load of laundry up the stairs, seems like an insurmountable obstacle. I’m generally pretty strong and healthy, and I’m young – I imagine for an older adult, the fatigue would be even more debilitating.

2. Feeling like your body is out of control = no fun.

I’m used to my body working a particular way. That crazy fever, that unforgiving cough, that utter distaste for anything edible – that’s not me! It felt like my body was rebelling against me, and I hated it. In particular…

3. I hated not being able to breathe.

Even once I was fever-free for a few days and physician-cleared to return to work, I was coughing a lot. A LOT. And I was getting winded carrying my guitar across a parking lot, let alone singing and dancing in an appropriately enthusiastic manner for (some of) my clients. Singing is just not fun at that point, and I will remember that before I push too hard for someone to sing when they just may not be breathing well enough for it to feel good. (Side note: One of my go-to phrases in music-making situations is this: “It doesn’t matter how you sound, as long as it feels good.”)

In any case, breathing is necessary for speaking and singing, both of which are quite frequently necessary for doing music therapy. So in that case…

4. I was embarrassed by my symptoms.

I would be having a serious conversation with a client and start coughing uncontrollably. Not cool. Someone asked for me to sing “Danny Boy” at their loved one’s bedside. I sounded like a frog, couldn’t hit the high notes, and coughed in the middle. That was embarrassing to me, although I sensed that the music was still meaningful and powerful for both of these clients.

This reminded me of the embarrassment I’ve sensed from clients who couldn’t sing without coughing, or who couldn’t raise their arms above their heads as I was demonstrating, or who realized that they hadn’t made it to the bathroom in time. Even though I wouldn’t want them to feel embarrassed or ashamed, I know those feelings are sometimes still there.

5. Everyone else’s world kept spinning – without me, even!

I had to cancel and reschedule many sessions and obligations during those weeks I was sick and recovering. I hate letting people down, so I dreaded telling folks that I wouldn’t be present for them as scheduled. But guess what? Not only were people understanding (and glad that I wasn’t sharing my germs!), but their routines continued as normal, without me there.

It’s weird to think that your world can continue without you there, that all of the people in your life can adjust to your absence. But as we age – retire from our jobs, move from our homes, prepare to leave this earth – we have to face this reality. Being gone for a few weeks, I got the smallest glimpse into how that might feel.

So what?

I survived the flu and pneumonia and am no worse for the wear, but that is not the case for many people, especially those in their 70s, 80s, and 90s. I don’t know what it’s like for the flu or pneumonia to knock you down for months at a time or to be the illness that ends your life. But now I think I understand just a little better what it’s like. I hope that tiniest bit of insight will make a difference in how well I can serve my clients.

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