Caregiver Burnout & Crisis: Care for the Carer

This is a transcript from episode #49 of the Let the Verse Flow Podcast.

As chance would have it, just as I was writing this podcast episode on the harder side of caregiving, my mom had a major health crisis, and the events of her illness and how they transformed my life have been confirmed by everything I want to say in this episode. Caregiving is one of the hardest challenges of my life, but contained within even the most painful phases of burnout, is a certainty that when the chips are down, I will be there for my loved ones. It’s who I am. Here’s a story of one burned-out caregiver. If you feel like me, this episode is for you. I can’t ease your pain, but I can walk beside you – and share my truth. I’ll explain.

I recently saw a social media post by Project Happiness that read:

We are not a machine. We need to rest. We need time. We need space. We need laughter. We need love. And perhaps most importantly, we need each other.

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A post shared by Project Happiness (@projecthappiness_org)

Amen and hallelujah to all of this. We fall apart sometimes, we get exhausted, angry, resentful, and fed up, and we are allowed to have every one of those feelings. No limitations or boundaries on accepting how we feel.

The work of caregiving is demanding, physically, emotionally, and even spiritually. We may not be able to keep up the pace, and when we start to see anger, sadness or depression creep into our lives, we can be sure that it’s time to make time for a break. It may not be evident in our overbooked calendar. We may have to say “no” to others, but if we don’t take breaks when we need them, we break ourselves. And I don’t want that to happen to you, or me, or any caregiver who’s out in the world giving of themselves to make another person’s life better. 

The Shapeshifting Nature of Caregiver Burnout

For me, caregiver burnout comes in many forms. Caregiver burnout is a shapeshifter. By that I mean it can be brought on by many different situations and experiences and can take the form of any number of emotions. Sometimes it looks like unrelenting fatigue.

Fatigue in all its Forms

The type of fatigue that makes you just want to lie down and stay in bed for much of the day. That fatigue may be accompanied by aches and pains, a sore back from bending or pulling. Twinges of cramping in your shoulder.

The fatigue may feel more like a heavy blanket has just been placed over your body and it may signal some accompanying sadness or depression that makes you want to stop the roller coaster of caregiving and get off. I call that type of fatigue, the “stop the rollercoaster, I want to get off” type. You just want to lie on the couch or sleep in bed for the near foreseeable future. It almost feels like you are trying to stay awake and upright when on the inside you feel like a sleepy puppy or a newborn baby. Fatigue is a sign you need rest, and I’ll talk a little later about how to get it and what types of rest could feel nurturing and comfort you.

Anger and Resentment

Caregiver burnout can shapeshift into feelings of anger and resentment. I’m very familiar with this iteration of burnout. I’ll tell you a story about how my resentment builds up; let’s see if you can relate.

I recently had an unexpected workweek where I was going to be able to work remotely on a Monday and then have the day off on Wednesday. It was going to be a short work week (and who doesn’t love working in their pajamas I thought). For the remote Monday, I planned to get through some mundane work chores that were building up but hard to do while being interrupted in the office.

And on Wednesday, my day off, I was going to build a new sound booth out of PVC pipes and blankets. This is a daunting challenge, but one that I had planned and worked toward for several weeks. I had the blueprints, sourced, purchased, and delivered all the materials, including 10-foot PVC pipe that I would have to cut down to build my sound booth frame. I was nervous but excited about this build, and I had devoted Wednesday to putting this together. 

But, here it comes, on Sunday night, my partner got sick, really sick with fever, aches, congestion coughing. He was dizzy at times and needed help getting around the house. Dread immediately settled as I went to bed that knew cause I knew I wouldn’t be able to focus as much on my Monday work tasks while taking care of him, and on Wednesday, I could still build the sound booth, but I’d have to do it in intermittent intervals in between taking care of him.

Given his disability, he’s prone to falls, so his weakness from being ill meant I had to take extra caution with him as he transitioned to the bathroom and other rooms of the apartment. I knew it wasn’t his fault – he hadn’t wanted to get sick and is a hardworking man who continues to work well past retirement age. He’s driven about his work, so staying home is hard on him. But it was also hard on me. While it seems small, here’s the shapeshifter quality of caregiver burnout, it was big to me. I felt cheated out of my alone time and the singlemindedness I hoped to have when doing my work and building this project at home. So initially, I felt a bit angry and disappointed, but then resentment came on because this isn’t the first time this has happened. 

There’s been a strange pattern; whenever I get a block of free time, it seems that something happens to foil it. I’ll have a day off, and suddenly the personal care assistant calls in sick and I have to take over the day’s caregiving. Or, I have an hour or two to myself and I want to be home alone, but suddenly others are home that day when they typically aren’t. I never mention days off to family members for fear that they will think of that time as theirs in some way, or somehow the whisper of it will set off a new caregiving challenge. I once had a week off from work, and my mother had another small stroke and was hospitalized for that week. Don't get me wrong, I was grateful to be able to be there with her in the hospital and have the time to take care of her, but when I returned to the office the next week, everyone at work was talking about their restful or adventuresome vacations, while I was exhausted and burned out from being at the hospital at all hours of the night the week before.

The list goes on, but my point is that even when I plan for small periods of what I hope will be restorative alone time, my caregiving responsibilities often interrupt that – and when that happens often, resentment starts to build and it seems (at least emotionally) that it’s being planned this way.

It can mess with my head and make me think, "I thought I had a wonderful week planned, but look what happened. Gosh, I can’t even plan to take a day off."

And the implication is that you don’t control your life, the random ups and downs of caregiving control it. That’s a hard pill to swallow. So anger and resentment are a huge part of caregiver burnout.

Isolation & Sadness

Next is the onset sometimes of isolation and the resulting sadness when you are caregiving without a good support system. My support system is pretty solid and I still feel isolation and sadness sometimes. My best friend and my daughter are the biggest allies in this area. My daughter reminds me to do things for myself and my best friend offers tempting venues and outings for the two of us to get away from our routines. Both have meant more to me than I can express. Still, especially when someone is hospitalized, I “lose” a day off to some unscheduled caregiving, or I just feel exhausted and stretched too far, I can fall into the trap of feeling like no one understands me. No one knows how hard this situation is. There's a strong feeling of being alone in this.

Some part of that is valid; it’s hard to understand the stress of caregiving unless you have experienced it, and there are many faces to caregiving: there’s taking care of an elderly parent, a spouse or partner, intermittently helping a friend or neighbor, taking care of a young or adult child with a disability. How about helping a friend or family member with cancer?

In all these permutations, there can be both the taxing nature of the caregiving itself – back-breaking work lifting, holding, perhaps washing or feeding, and the emotional stress of seeing someone you care about go through cancer, illness, Alzheimer’s, or muscular weakness; the diversity of challenges is staggering. Sometimes you are caring for someone you have a complicated relationship with. There may be anger or resentment in the relationship prior to you stepping in to take care of them, and you're doing it anyway. That can be so difficult.

You are bound to have an emotional response and one that is singularly yours. No one around you will fully understand the depth of your giving, your stress, and even your satisfaction. That can make you feel lonely and sad, and while difficult to manage, the very fact that you are listening to this podcast means you are capable of reaching out for help. Before I get to some suggestions to lessen these feelings, let’s acknowledge the full spectrum of feelings.

Hopelessness

One that I feel intermittently, but painfully strong sometimes, is hopelessness. This is usually some form of stress, sadness, and fatigue. It’s the fatigue that often turns sadness into hopelessness for me. I’m exhausted and can’t think past the current struggle. At the same time, I seem to have a chattering mind that’s telling me that things will never change. They won’t get better, and this painful life situation that I'm in will be with me forever. I’m very familiar with these thoughts and emotions, and so some part of me doesn’t believe them – because I’ve seen how my perspective can change from day to day, but in the moment, they can feel so visceral and real. Like they're set in stone, but they aren’t. I remember that my perspective will change – usually within a day or two after I’ve taken some action, had some rest, or put some distance between me and the situation, I remember that the hopelessness goes away.

So, we have anger, resentment, fatigue, isolation, sadness, hopelessness, and don’t forget the reality of the struggle. No one feels gleeful when their parent develops Alzheimer's, becomes agitated at night, and turns into someone they don’t know. No one immediately has feelings of gratitude wash over them (for what they have left) when they are helping a loved one face an illness.

The gratitude, sometimes the flipside of grief, may be hidden for a while while you process the stress and loss in the moment. The reality is, this all sucks. You may care for a difficult person in your life. I feel for you in that situation, and all I can say is that you are so strong, and I hope you feel a sense of resilience as you care even when the relationship is strained. You're doing an amazing job, and you giving to someone even when the relationship is so difficult.

Caregiving necessitates that you recognize and compensate for someone else’s struggle, frailty, or limitations. This may be in concert with a deep sadness. I work with students with disabilities, and while they are an amazing group of individuals, capable of developing so many incredible qualities, they do struggle to develop in ways that mesh with the way our society is structured. The conventional ways of doing things. Their parents may not know how to face their need for 1:1 support well into adulthood. So there’s caregiving and there’s pain in seeing a loved one perpetually struggle to adapt to our current world and the way they fit in (or sometimes don’t fit into it). 

And I think about this juxtaposition of all the wants and needs that we hope for, all the things that we hope our caregiving will do. and will help someone else. Here’s a poem I wrote about the juxtaposition of all the wants and needs we hope our caregiving will satisfy and the reality that even though it may fall short of our desires, we are left with something beautiful, untamed, and pure. That giving that we have for someone else. For me, our giving heart is as beautiful as baby’s breath, those little white puffy clustered flowers. This poem is called Baby’s Breath.

Baby's Breath

By Jill Hodge

I wanted to give,
strip down the caring to a gesture.
But you needed an embrace,
and only my arms would do it, so I
squeezed you tight to hold off danger
and did it with grace.

I wanted to share,
some small piece of my loving quilt.
But you needed so much of it,
I gave it all away
kept nothing, not even a square parcel of knit
to patch up the fear.

I wanted to fix things,
the impact of which I did not know.
But you needed a new sower,
so I reaped and reaped, tilled and toiled
till my hands turned over and over,
like leaves made busy when they find a blower.

I wanted to unearth a new life,
new choices with options galore.
But this is the way it goes,
so I gave up control
like a row of black crows searching
a deserted, empty road.

In the end, I couldn’t have it my way.
Though I gave it all I had.
Walked up the hill, breathless and finally still.
My wanting fell away, I felt grey and wary,
But you gave me a spray of baby’s breath.
Tangled and wistful,
A contrast, pure white and blissful.

Here is how I’m working to reduce my caregiver burnout. I hope one or more of these strategies resonate with you and offer some comfort. As my mom’s recent health crisis confirmed, we can’t know each other’s struggles, but we can stand alongside one another and say “I see you. I hear you. I care.” 

#1 Feel How You Feel

I hope by now you know that the first thing I’m going to say to you is to accept and honor how you feel – whatever that may be. That's the first thing you have to do to overcome caregiver burnout. You are entitled to your feelings, so please don’t beat yourself up or judge yourself harshly. Even if you are so fed up that you actively wish the caregiving would stop (and you could leave the situation), you haven’t walked. You’ve stayed in the fight and are trying to deal the best way you know how.

You still have dreams, aspirations, and desires for your life and they might not mesh with your caregiving role. How should you feel about that? My answer is: however you feel. No one says that you have to gleefully provide care every single day. We aren’t machines, and we may need to step back and get help to alleviate our burden. That may be for days, hours, or just 15 minutes, but each little break counts. So accepting your feelings is the foundational first step.

#2 Treat Yourself Extraordinarily Well in Small Ways

After acceptance of my feelings, I try to treat myself extraordinarily well in small, doable ways. For me, that means arranging high-quality food on a clean, elegant plate and taking 20 minutes to enjoy and savor a meal. I recently had smoked salmon topped with avocado, crushed pepper, and a few slices of onions; radishes topped with feta cheese crumbles, and a slice of homemade sourdough bread. The plate looked beautiful with shades of orange, red, and green, and these quality foods made the meal feel special – and that made me feel special. I realized I was recognizing my needs, I was seeing myself even if others weren’t. In the hospital recently, I people-watched as I sipped a big cup of good coffee. It was a simple 20-minute rest from my mom’s bedside, but it was all for me.

#3 Dive into Sensory Rituals

You could also take part in sensory rituals like baths, rubbing your favorite lotion on your body, or dabbing your favorite perfume on your neck and wrist and lingering to smell it from time to time. It only takes a short sniff to bring you someplace else, and that moment is yours. Cherish it a bit. Consider other rituals like lighting and enjoying a candle, walking around the block and filling your lungs with fresh air, or coloring/drawing for 30 minutes while tucked in a cozy corner couch or on an easy chair.

#4 Get Out of Your Head and Into Your Body

If you have 30 minutes, get physical. Sometimes you’ll want to keep it calm and slow by walking, stretching, or doing some yoga moves, and other times fast and energized like dancing, rowing, or weight lifting can be a good release. When I’m angry and need a release, I often listen to House or techno music while lifting a few weights, but when I’m sad or pensive, stretching feels better. The act of reconnecting with your body (and your soul in some way), returns your focus to yourself and communicates to yourself that you matter. 

#5 Talk to a Trusted Friend or Therapist

Talking to a trusted friend or therapist can work wonders. I was never one who could quite get into therapy until I met my current therapist. I’d tried a few others over the years at different stressful times, but as luck would have it, I started with my current therapist right before my mom had her first stroke. That's been over three years now.

The most important thing I get from our weekly talks is clarity. My therapist is very good at restating what I’m saying in a way that moves it along just a bit by adding some clarity. Somehow the rephrasing that she does opens up a new perspective that loosens up the tension or feeling and helps me dislodge it. It’s subtle, but valuable.

Friends who listen are like diamonds. Brilliant and priceless. Try to find one that won’t try to fix you or the situation. I think it’s best if you look for someone who listens and offers cues of empathy. Maybe they hug you, stroke your back, or check in from time to time to see if things are better, but they don't try to fix it.

#6 Set Healthy Boundaries by Saying "No"

Remember that there are times when you should and can say “no.” Some caregivers have difficulty setting boundaries. I actively work on this, so I may even rehearse saying “no” or stepping down from a commitment in my mind before I take the action to say it aloud.

If we give until we are so run down that we can't do anymore, it does no good for anyone, and we have to remember that we are still living our lives. When I feel overcome by the enormity of taking care of my mom, I remind myself that she has had a good, long life. She just turned 89, and I can’t give up my life to add more to hers. She would hate that idea, and her physical condition is a natural part of her aging. Giving up my life to extend hers is not the answer. Any bit you do for someone else counts, and even if it doesn’t help them overcome their struggles or their health issues, it helps ease them. Please accept what you can do, without throwing your own life under the bus to make it happen. Most people would not want that from you; I know my mom would not want me to ruin my health for her.

#7 Get Granular with Gratitude

The last thing I want to recommend is to get granular with your gratitude, really notice, and call out the small things: I’m grateful for a warm bed, this breath, this lovely perfume. I’m grateful for this solitary walk to work, for the floor that someone else moped, or for the groceries that were bought. You have to see these small experiences and gestures as meaningful. Make your vision of the world smaller, become slightly more insular to reduce stress, and get back to the essentials of life. 

Journal Prompts for Caregiver Self-Care

Here are some journal prompts to help you remember to take care of yourself. Write or reflect on these questions, and remember that you deserve caring too.

During the making of this episode, my mom was hospitalized with a serious infection. One day she had a mild cough, and the next day the doctor was telling me to get to the hospital before the end of the day because she might not make it. She seems to be making it through that crisis, but there will be others. How will I be able to deal with them if I allow myself to get burned out? I won’t, and so I must take care of myself, and one of the best ways to do that is to shut out the noise, turn up the music, dance, and sway, and try to return to the bright side of the beat.🌞

Podcast Music: My thanks to all the musicians who make incredible music and have the courage to put it out into the world. All music and sound effects for my podcast are sourced and licensed for use via Soundstripe.

Songs in this podcast episode: The Sensitive Hustler by Sam Barsh; Slide by GEMM; Faux Cow Chair by Tony Sopiano; Pyaar Kee Seemaen by Cast of Characters

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The Art-lovers Creative Practice Guide to Stop Overthinking, Worry, and Rumination

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