The Struggling Caregiver

Treading water in a sea of anxiety and accepting our limits

Being a caregiver for a loved one is a challenging role, and one we often don’t anticipate. It’s a vital position that comes with tons of pressure — and we often find ourselves thrust into it unexpectedly with little to no training.

At first, the focus completely shifts to the person (or multiple people, in my case) who need care. They’re experiencing tremendous pain or discomfort due to injury or physical or mental illness, and we can’t ever fully understand what they’re going through because we aren’t living their experience.

As an empath who takes others’ emotional or physical pain and internalizes it to fuel my own terrifying anxiety, I suffered just from seeing my teenage son suffer with chronic, unexplained pain.

I first told myself that I had to keep things in perspective and keep the focus fully on him. He was going through something terrible, and I had to be strong for him because he needed me to be — so I couldn’t waste time wallowing in my own feelings.

But reality rears its head pretty quickly for first-time caregivers. I soon came to understand that I have my own emotions to contend with, and ignoring them is damaging for both me and the ones I care for (my son and my husband, in my case).

I know now that I need a healthy outlet. I need to process the emotions I’m experiencing. I need to recognize that I have needs, and I have to address them when I can.

Even if the challenge of seeing my son suffer, organizing schedules, making appointments, meeting with doctors, driving everyone everywhere, and working full-time to pay all the bills isn’t as difficult or traumatic as what my loved ones are going through, it is still one of the most difficult things I’ve done.

I’m coming to realize it’s not fair or helpful to neglect my own mental and physical health. And for me, expressing my own emotions is a great outlet. It’s not weak. It’s not “complaining.”

It’s much needed.

Helping my son and my husband — while working full time

In November, my once perfectly healthy 15-year-old son began experiencing unexplained pain in his forearm. Over the course of a few weeks, the pain spread through his entire body and became more severe. Sometimes it got so bad that I spent late nights just holding him and trying to talk him through while he could do nothing but writhe and moan in agony.

I’ve taken him to urgent care, the emergency room, and the general practitioner. Then came specialists, x-rays, MRIs, and other tests. There were lots of trial meds. Trips to the pharmacy. Meetings with teachers to talk about missed school. The holidays.

It made me feel more worry, fear, and stress than I thought I was capable of handling.

And while all this was going on, my husband experienced a sudden seizure in mid-December for the first time in his life. Currently, he is doing okay, but his body took a hit from the fall and he’s unable to drive for at least three months.

I’m fortunate that they are both able to take care of their basic needs. They can go to the bathroom and bathe on their own. Get dressed. Eat. Move. In these aspects, I know my challenge isn’t as harrowing as that of other dedicated family caregivers.

But, there’s still more on my plate than I’m used to, and sometimes I’m afraid it’s more than I can handle emotionally.

Now, I’m also taking my husband to specialists and upcoming tests to ensure that this was just a fluke and there isn’t any serious underlying cause. I’m also driving him to his job and back every day, which has just this week gone from part-time to full-time.

The authors of Family Caregiving write: “Caregiving can trigger a host of difficult emotions, including anger, fear, resentment, guilt, helplessness, and grief.”

I’ll admit, I’ve felt all of those emotions and more. The fear I’ve felt for my son and husband has been soul-crushing. So has the helplessness and grief — I yearn for the days when they weren’t experiencing such severe mental, emotional, and physical pain.

The daily schedule struggle

I’ve also had guilt and shame. So much of it. Particularly when it comes to my husband. Our relationship was already on the rocks, and I told him I wanted to split up just hours before the seizure happened.

Now, we’ve put all that on pause so we can get him healthy and on his feet. I care about him and love him, whether we eventually decide to part ways as a couple or not.

But I’m having a rough time. After being emotionally crushed and mentally drained by my son’s medical mystery for months now, I just don’t have a lot of energy left over for more empathy or sympathy. I’m so, so tapped out, but then I feel guilt and shame for not being more emotionally supportive about what my husband is dealing with.

What I feel a lot of the time is pissed about all the driving! I’m a nervous, anxious driver. I’m diagnosed with generalized anxiety disorder, and one of my triggers for panic attacks is driving.

Now, I’m doing so much of it. So many trips to and from school, work, appointments, and, when my son is up to it, extracurricular activities. And one of the biggest things I struggle with is organization, which only exacerbates the driving anxiety.

Organizing medical paperwork, putting dates on the calendar, calculating how long it will take to get from point A to point B when new appointments pop up, etc. I’ve never been great with the administrative aspects of adult life, and I need that skill now more than ever.

Here’s what a typical day looks like:

6:45 a.m.

Help get the kiddo ready and drop him off at school by 7:45 a.m. Put out a big fat thank-you into the universe that his pain isn’t so bad that he has to miss school today. We think the chiropractor and the new med he’s on is starting to help, but he’s missed about 15 days so far.

7:50 a.m.

Take my husband to work. We fight traffic on the highway. He likes to chat a lot about work and anything else on his mind on the way there. I’m in no mood to talk and I feel like a huge bitch because of that. I try to remind myself it’s okay to have limits for what I can and cannot do. I say “yes” and “mm-hmm” here and there, but really, I just want to listen to music and focus on driving. It’s too early for me.

8:20 a.m.

I start my job. I work from home. Ironically, the one thing I really loved about working from home was no commute…

11:00 a.m.

My teen calls me and asks for a ride home at 11:00 am. It’s exam week, and they’re allowed to go home early after testing. He used to walk home, but I’ve started picking him up because it’s painful for him to take that long of a walk with that heavy of a bookbag, and setting off that pain would set him up for an awful night.

11:30 a.m.

We stop to get my son lunch at Subway. I’m way past due for grocery shopping. I’m not hungry yet so I don’t order food for myself. However, I’d love a little caffeine, so I ask for a cup of ice to pair with a 20-ounce bottle of Cherry Coke, which is not at all cold in their fridge. This is my treat.

The employees inform me that I can’t just pay fifty cents or whatever for a cup of ice. They’d have to charge me the full price of a fountain beverage to get the empty cup. There is no fountain Cherry Coke, so I’d have to purchase a drink of nothing AND ALSO buy the 20-ounce bottle of Cherry Coke to get what I want. I’m paying all the bills in the house right now and feeling the pressure, so I just can’t justify wasting money on a crappy drink that is terrible for me.

For reasons I can’t explain, this is the part of the day that makes me very nearly break down. I know it’s just a soda. I know I could take the bottle home and put it in my own cup of ice. But it’s that damn tiny straw that breaks the camel’s back. Why can’t anything be as simple as it’s supposed to be?

I briefly want to pick up a stack of cups and throw it at the employees, which isn’t usually like me, I promise. Then I tell them thanks, I’ll have nothing. I pay for my kid’s lunch and we leave.

11:45 a.m.

I work some more. I somehow manage to get what I need to do for the day done, which is a good thing, because I have to stop working early today so I can take my son to his next appointment.

3:30 p.m.

I drive my son to his chiropractor appointment. It seems to be helping him, although we aren’t sure if it’s the chiro or his meds. Maybe both? The mystery is a constant frustration. And at two to three times a week with the chiropractor, it sure is tough on the schedule.

4:30 p.m.

After the chiropractor, I drive across town to pick my husband up from work.

5:20 p.m.

I cook dinner as quickly as I can. My husband will do it if I need a nap at this point, but I do it often because he’s exhausted and sore from work. Dinner is a real struggle bus around here sometimes.

6:05 p.m.

I drive my son to rehearsal. Before the pain started, he auditioned for a professional show. It’s a paying gig and a dream come true for him — and rehearsal is 6 nights a week for the entire month of January! It’s a lot for any kid, especially one who has been dealing with chronic pain. We are both hoping he keeps getting stronger so he’s able to do the things he loves. When choreography starts up, he’s not sure he’ll be able to do it, and it’s a source of worry for him.

6:30–9:30 p.m.

I don’t really want to go all the way home during my son’s rehearsal, so I drive a shorter distance to Starbucks or the gym for some me-time. I hardly have the energy to write or work out, but it’s a better option than all the driving. Carving out me-time is a necessity for anyone in a caregiver position, and one that is often incredibly difficult to come by.

9:30 p.m.

I pick my son up and we head home. Finally, no more trips for the day! I do my best not to uncork a bottle of wine. I need my energy for these weekdays, and booze won’t help one bit.

Love yourself and stick to your limits

One thing I’d recommend to a family caregiver or medical advocate is to forgive yourself for having limits.

I don’t want to be chatty in the morning with my husband, Mr. Morning Person. I am who I am, and that’s totally okay (even though I still struggle with feeling bad for being in such a crummy mood).

And if I need my husband to grab an Uber from time to time? That has to be okay too. Sure, I worry about the money aspect of it. The reason we’re stressed financially is because he’s been let go from two jobs within a few months. For maybe half of that time he didn’t work at all. Spending money on an Uber isn’t all that helpful to our situation, but I can’t be two places at once, so sometimes it’s a necessity.

I do have more patience for my son, and I think that’s a momma bear thing. It’s just built into me, and I remind myself that it’s natural that my son and my husband don’t get the same treatment. I just have a higher emotional tolerance for tending to my kid, and that’s always been the case.

It’s a complex range of emotions I spiral through every single day, but I have to let myself feel and process these things if I’m going to be able to help them when they need me.

As difficult as it is to fit it into our daily schedules, caregivers have to find time to care for themselves in order to help care for others.

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