Whimsy to Woeful

Photo by Karolina Grabowska

It’s quickly approaching 1 am. I am sitting on the floor in the living room, surrounded by a sea of towels. A stack of clean. A stack of dirty and a stack of—I am not even sure at this point. Emily is leaning her head on my chest, and we are covered in a big towel. The sound of the washer and dryer faintly hums in the background. The Wiggles project from the television in Emily’s line of vision. Todd and Justin tapped out hours ago. Even Ben has exited the scene to snuggle on the sofa with Coco. I am exhausted and frustrated. It isn’t supposed to be like this, is the useless thought swirling through my mind. 

The weekend was full of fun and friends. I reunited with The Country Kickers on Saturday night. (I bet you didn’t know I am a retired dancer?) In 2007, on my quest to make new friends (more on that: Grief Within the Beauty), I discovered line dancing again. I experienced a long pause from hobbies for several years after the kids were born. It was great to get out and do something for me after so many years. This new hobby introduced me to the world of dancing for an audience. The Country Kickers danced at the local summer fairs, and we also performed for veterans, seniors, and children. I made new lifelong friends. They accept, support, and encourage me, and they embrace Emily completely. They have become my extended family.

Country Kickers, Circa 2010
Country Kickers Now

On Sunday, Todd and Emily had backyard projects to begin. I was heading to meet up with a large group of We Are Brave Together moms. Our first Friendsgiving celebration was about to go down. The sun was bright, and my mood was light. I relished an afternoon of fellowship and delighted in the community of moms that understand the struggles and joy in this crazy, unexpected journey.

I arrived back home to a quiet house. Todd and Emily were on a mission to Home Depot to get extra supplies. The ones you never know you are going to need the first (or second) time you go to the store. I seized the opportunity to just relax on the sofa with the pups and play a little Word Crush. I began planning my weekly writing. I think I will do something light and whimsical. I  was feeling young and carefree after a weekend of laughter, good food, games, and even a gratitude circle—Yes, our group of We Are Brave Together moms wrote gratitude cards. We placed our gratitude notes in a jar. The best part was pulling out the cards and reading them aloud.

Did I mention I got a book in the mail today from a friend? Receiving mail on a Sunday was unexpected. The gift from a friend capped off a perfect weekend. The book entitled Watering the Soul is full of poetry and prose by Courtney Peppernell. My joy cup was not only filled to the tippy top but spilling over the edges a bit.

As I got Emily ready for bed, I noticed her nose was runny, and she was beginning to sound a little hoarse. I figured the Santa Ana winds were aggravating her allergies. I put her to bed and texted the new caregiver that was planning to start on Monday. I wanted to confirm and answer any questions. By the time I hit send, the coughing had started. It was loud, violent, and unrelenting. Oh no! Todd and I bolt into the bedroom to find Emily vomiting. Her bed, bears, and hair were covered. And so it begins…

As I lower my sleepy, sick baby girl into the tub, I begin to feel my mood sink. I hold back tears. My grand plan of moving Self-care Sunday to Saturday this weekend to adapt did not go as I imagined did it? I comb out the chunks of vomit from Emily’s long locks as I comfort her. Todd begins stripping the bed and assessing the damage. Justin is on the hunt for another waterproof pad for the bed. The washer starts chirping, and the dogs are pacing. 

The bed is ready once Emily’s tummy calms down, but I know it will be hours before she is ready to rest and relax. More laundry and outfit changes will follow. The washer will be working overtime. I did manage to secure Emily’s hair to prevent it from getting caught in the crossfire of the episodes that followed. A small victory on a dark night. Emily and I sit on the floor, surrounded by the smell of eucalyptus and lavender that is emerging from all of the diffusers. I text the new caregiver to cancel and make a mental note of other things to cancel in the morning. In the darkness, listening to noises all around me, my joy bubble bursts.

As darkness falls on the day, and I write before the sun comes up, I reflect on the unpredictable journey. I planned to write all things whimsical this week, and now my thoughts are woeful. There is no whimsy in sight. I know the woes will soon pass. I will rise up grateful for another day. I will water my soul (thank you Kimberly) and begin to refill my joy bubble, but first, sleep.

Choosing Guilt Improved My Mental Health

Photo by Talles Alves on Unsplash

Ever since I was a child, I prioritized the needs of others over my own needs. I never wanted to let others down. My desire to meet the needs of family, friends, and even strangers generally came before my willingness to recognize and care for my needs. On the rare occasion that I did something for myself, I hated the guilt that came along for the ride. I avoided the feeling of guilt at all costs.

There was a consequence to my guilt avoidance. I developed an intimate relationship with resentment. When I chose to meet the expectations of others at the expense of my desires, I resented my choice. Resentment is defined as bitter indignation at having been treated unfairly. Who was treating me unfairly? No one was forcing me to choose them over myself. I was the one acting unfairly toward myself, and I was the one that was suffering the consequences of my resentment.

Forty-plus years of regularly choosing resentment over guilt negatively impacted my mental and physical well-being. I held the resentment tightly. I did not let it go or express it, and the result was misdirected anger and bitterness toward those I cared about. This was unhealthy for me and unfair to my family and friends. It wasn’t until the side effects became hard to ignore that I began to see the downside of coddling and cradling the resentment. I experienced increased anxiety, mood swings, and disturbed sleep. 

The negative impact of holding and suppressing negative emotions, like resentment, can lead to:

  • Anxiety
  • Depression,
  • Mood disorders
  • High blood pressure
  • Sleep issues
  • Emotional Dysregulation
  • Burnout (This is a BIG one for caregivers)

(Learn more about the effects of resentment on the mind, body, and soul in this informative article at verywellmind.com.)

As I learned the importance of caring for myself, I began to do more things that made me feel guilty. The emotion of guilt was not a fun feeling to have. It was uncomfortable and unpleasant, but I felt better. It felt lighter than feeling resentment. The guilty feeling began to dissipate faster as I practiced accepting the emotion rather than trying to judge (or avoid) it. I was able to process the guilt more quickly. I believe that as I learned how to love and care for myself, the feeling of guilt was replaced with self-compassion.

When we give ourselves compassion and empathy first, we have more to give to others. We are built to be empathetic and compassionate, and it starts with us. Practicing self-compassion requires us to listen to the internal voice inside each of us. We are curious about our desires and wants. We consider our needs when we make a decision or choice. I am not a therapist, but I have experienced the positive impact of self-compassion on my mental health. Each time I make a decision that benefits my mental and physical wellness, I feel better. I am lighter. I have more energy to care for others. My empathy and compassion expand. Dr. Gábor Maté (a physician specializing in trauma and addiction) says, “The next time you are struggling to make a decision, recognize the feeling that comes up. If your decision comes down to feeling guilty or resentful–choose guilt.”

Note: I highly recommend a recent Mindfulness Exercises podcast episode that shares an interview with Dr. Gábor Maté. This is a powerful interview. Maté discusses how practicing self-compassion expands our empathy and compassion for others. There is a lot of goodness packed in this short episode.

Retreat or Workshop? Nope. It Was Magic

Did I agree to attend a workshop or a retreat? This thought came up less than a week before I would be flying across the country to spend 3 days in a cabin in the woods with nine perfect strangers I had never met in person. Didn’t I read a book like this by Liane Moriarty? Things didn’t exactly go well in the book, did they? You are being ridiculous. You always say that strangers are just people you haven’t met yet. If this is a workshop, I am not sure what I really have to offer. I can share a story. I am not a presenter. Why did I say yes? Welcome to the humor and judgment of my inner chatter.

I am glad I said YES before my thoughts could talk me out of it—thank you Shonda Rhimes.

I did not let my fear or insecurity sway me. I got on the plane and headed to St. Paul, Minnesota. After a long day of travel, I was retrieved from the airport by Jean. She greeted me with a huge hug and I dropped my luggage into the back of the car. We set off on a 2.5-hour drive to the cabin on the lake in Hayward, Wisconsin. Jean and I both hear song lyrics in every conversation. Our conversation (and singing) flowed with ease and any lingering fears dissipated.

It was almost 11 pm when we arrived at Elaine’s cabin. Bobby, DJ, Karen, and Elaine were drinking coffee and tea at the table. There was laughter (and magic tricks). At that moment, it felt like I had just arrived at a family gathering. Any remaining doubt left my body. My roommate, Sharon, was already asleep. I crept into the room quietly. I retrieved my pajamas and toothbrush. I got ready for bed and I crashed hard.

In the morning, I met Chris and Sharon. The entire group drank coffee on the dock of the lake watching the sunrise. As the day progressed, Amy and Gail joined the Cabin Crew. Each person presented an activity, presentation, or talk.

From the raw conversations and openness of each individual, to the unique gifts each brought to the table for us to feast upon, it was an incredible experience. The eclectic and electric energy was palpable. The immense joy and gratitude I experienced were overwhelming. Emotions swelled up from within and rolled out of me in tears. Crying and smiling are constant companions in my world. When I am happy, I cry. When I am sad, I cry. When I finally reach a real person when I call the insurance company, I cry—-I am a crier. I shed a lot of tears.

The weekend was filled with incredible food that was all prepared from scratch by our master chef, Sharon. There was carpool karaoke during trips to the store to grab just one more missing thing. There was magic, art, nature walks, personal shares, exploring words, communication styles, planning, tech talk, gratitude practices, listening circles, sunsets, campfire, meditation, morning altars, great food, laughter, and fun.

There is no way I can adequately describe each person in a short blog. Let me introduce the cast of Nine Extraordinary Humans:

Elaine Pardi: The Communication Stylist, nurse, cofounder of Animals Connect Everyone, and our workshop/retreat hostess. Her CARE Assessment program is exceptional.

D.J. Elhert: Creator of Portfolio of Power (POP), magician, tech guru, and the man to call to fix anything (including a light fixture Sharon and I managed to break in our room—Lucy and Ethel were here.)

Bobby Kountz: Author of The Someday Solution, mentor, speaker, artist, writer, and TheEarthHeARTist. A mentor, cheerleader, and friend.

Jean Caples: Cofounder of the nonprofit Animals Connect Everyone, nurse, caregiver, and best chauffeur ever. She sings and dances too.

Sharon Buckler: Writer, gardener, chef, and more. She grows the food and makes it taste delicious. Farm to table master and a great roommate. (When we aren’t breaking things.)

Amy Graham: Licensed counselor at Cityscape Counseling. She is a registered expressive art therapist. She is also the gifter of heart-shaped rocks she finds on her beach walks.

Gail Boenning: Author of Wandering Words and others. She publishes several love letters each week at 3musesmerge. After I read her daily letter, I will ponder, wonder, or wander, depending on the day.

Karen Hoffman: Creator of Living on Purpose. She has created card decks for adults, children, and women in the process of fertility treatments.

Chris Palmore: Creator of Gratitudespace. He has authored several books on gratitude, including The Mechanics of Gratitude, which I have written about in a previous blog.

It was a fabulous weekend of creating, collaboration, and connection. It was magic. It was magical.

Special Gratitude Note: I want to acknowledge and thank the person who started the chain of events that brought these extraordinary humans together, Michael O’Brien. Without his daily group meditations, we may have never connected. My meditation and gratitude practice has expanded and blossomed since I met Michael. He is the starting point for many relationships that have crossed my path in the past two years. Michael has quietly encouraged me and others to share our voices and ripple them out into the world. I am immensely grateful for his encouragement to unmute and let my voice be heard.

Caregivers Require Care Too

Caregiving is the most stressful and difficult job there is. I remember when my son was born. I delivered him and 24 hours later, my husband and I were sent home to care for this precious human on our own. Our doctor and friends referred us to reference books to guide us. The manuals were overwhelming and confusing and our son was healthy and typical. Emily was born less than 2 years later. The manuals I had were utterly useless, except for kindling on a fire. They were not going to guide my husband and I through the uncharted territory we found ourselves sinking into. Each child is unique. Some are medically fragile and require multiple procedures or assistance for feeding, communicating, or moving. Some children look “fine/typical” but have issues not visible on the exterior. This further muddies the murky water. 

Having a child that has severe developmental delays, or a rare disorder is daunting. We are thrown into a world of acronyms: OT, PT, IEP, GAIT trainer, NG tube, MR, MS, GD (Globally Delayed or maybe a word that would have you throwing coins into the curse word jar, depending on the day), DD, VI, SI. to name a few. Dr. Google is suddenly our new BFF and late-night call. When I started on this journey, I had Yahoo to help me with my searches. There were no Facebook groups or support networks. I felt isolated. 22 years later, it still feels isolating at times.

Supporting caregivers is not easy. Many will not ask or seek support or help. Caregivers have all the excuses:

  • No one will understand my situation.
  • My child is healthy except for ________.
  • I don’t have time to get support.
  • I don’t want to be a burden to someone else.
  • I don’t want to bring others down.
  • If I start talking about this, I will just cry and never stop.
  • My child is alive, so I should be happy. I am luckier than other parents. (Isn’t that one a doozy?)
  • I have no one to leave my child with so I can get a break.
  • It’s my job to care for my child.
  • My son/daughter “just has” or “only has”: ___________. 
  • Other parents do it alone. I should be able to as well.

These are just a few of the excuses we use to not accept, seek, or ask for the support we desperately need. Caregivers are tough, stubborn, relentless. They are problem-solvers. They are protective. They put everyone else above themselves. They do it mostly without complaining or asking for help. 

This works well until it doesn’t. The reality is none of us are meant to do this alone. No one is equipped to handle the amount of stress we put on ourselves. Often our children require more time and attention than one person can provide. We are not created to care for others all the time without taking time to rest and recharge. We think rest is optional, but the truth is rest is vital.

When working with a client on the importance of rest, I often use our cell phone as an example. If our cell phone is down to 10% battery life, we freak out. We panic to find a charging cable and a source of electricity. We worry about the battery dying and missing something important. A dead cell phone is useless. We need to think of ourselves as cell phones. We cannot continue to give without taking a moment each day to recharge. It is not sustainable. We will crash and burn. If that happens, and it will, then who will be there to take care of our loved ones that we fight for each day? 

I am a caregiver first. This is how I define myself. In order to maintain this title for years to come, I had to redefine the meaning. Caregiver first means I care for me FIRST. It is the only way I can continue to care for the family I love.

My self-care is rarely spa-inspired or glamorous. I drink more water and less wine. I schedule well-checks for myself. I ask others for assistance without feeling guilty. I refuse to beat myself up or feel guilty for putting me on the list. I no longer suppress my emotions. I release my anger and sadness along with my joy and happiness.

I take time to charge my battery a little each day. By doing this, I have become a better caregiver. I am more productive, powerful, and positive. It is my mission to help caregivers discover the magic of self-care. Caregivers caring for someone with a rare disorder or disability are a force when the battery is low. Imagine the collective power on a full charge.

Consistency: Built From Baby Steps

Photo by Juan Pablo Serrano Arenas

I was recently asked to share how I have consistently shown up for myself and the strategies or techniques I practice to create new habits. It hasn’t been a quick process. I only add (or subtract) one thing at a time. I have implemented change by practicing one small habit consistently. For example, getting up and drinking a glass of water before I do anything else. As one change became more habitual and required less redirection, I added another small change. When I begin a new routine, I strategize ways to make it as easy as possible. It is normal to resist change. We love routine. Our minds are happiest when we do not surprise them. There are simple ways to make it easier and attain great success. 

There are five ideas or principles that have aided me on the journey. 

  1. Take it SLOW. My meditation teacher, Michael O’Brien, often says that slow is fast. It sounds counter-intuitive, but it has been critical in successful changes for me. When we try to change something quickly or go all in, often our brains throw a fit and resist. It becomes too hard to sustain, and we quit. Slow progress creates an environment that fosters the success of change over time. We can keep pace. We can easily add an extra glass of water without much resistance from the brain. We take one small action and build upon it slowly. Over time, we get farther faster. Slow is smooth, and smooth is fast.
  2. Our excuses are our reasons. All the excuses we make not to eat healthily, work out, or go to bed at a reasonable hour are ALSO all the reasons we would benefit. Think about that. I talk about this principle in detail in Exchange Excuses for Reasons. For example, claiming you are too overwhelmed and stressed out to take care of yourself is the reason why taking care of yourself is critical.
  3. Have clarity and specificity in what you would like to accomplish. Our brains do not like vague statements or plans. There is too much room for interpretation and justification. If I say I want to improve my relationship with Todd, it is important to create actionable steps to make it happen. I need a map. One actionable step could be starting each day with a cup of coffee and a few minutes of conversation to connect. This step is tangible and measurable. It is an actionable first step that can be built on with other actions.
  4. Motivation is not mandatory. That’s right, we can do things and not be motivated. I get up in the middle of the night to let my dog out to use the restroom. I show up to work when I am scheduled. I drop off my daughter at her day program. I stop at the red light. I am not motivated to do most of these things EVER, but I still do them. Lack of motivation is not a problem and there is nothing wrong with you if you are not motivated. As we begin to practice new habits, we are not going to want to do them. It is uncomfortable and unfamiliar. Resistance is what change feels like. Expect headwinds and embrace that they are a sign you are on the right path.
  5. Building integrity with ourselves. Self-accountability is another tool that is paramount in showing up consistently and attaining our goals. Self-accountability is not an easy tool to develop. It might be best to start out in a group that helps hold you accountable. We tend to show up for others more consistently than we show up for ourselves, but over time we want to teach ourselves the gift of integrity. Like any skill, the more you practice self-accountability, the better you will get at it.

Consistency is built one day at a time. It is not a linear path. Falling back on well-established habits is normal. Sometimes you will get off course, but the faster you come back to your practices, the faster you will be back on track. Soon you develop habits that make the new path smoother. Slow is fast and fast is smooth.

Hmm, How Can I Help?

Photo by youssef naddam on Unsplash

Raising children is not easy. Caring for a child with medical needs or physical and intellectual disabilities adds to the challenges. The disease or disability can often take a family hostage, or at least that is how it feels. Your time is not your own. Your needs get kicked down the road. Sometimes they travel so far down the road, you can’t see them or remember what they looked like. Family and friends may want to help, but they do not know how. They wait to be asked for help. The reality is most families are not going to reach out. Most families will not share their struggles. Sometimes, we may not even know what we need.

Effie Parks, podcast host, and rare disease advocate, created an infographic about ways to support families in the rare disease community. The infographic outlines four specific areas and a list of suggestions in each one that family and friends can choose to act on. Here are the four categories and suggestions Effie received from talking to parents in the the rare disease community.

AT HOME

  • Leave a meal at the door
  • Plant flowers in my flower pots
  • Fold laundry
  • Put away supplies
  • Grocery shop
  • Take my car for a wash

TO SUPPORT

  • Sleep over for a night
  • Come to my house and send me on a walk
  • Get to know my child
  • Come sit with me during a procedure
  • Bring me lunch at the hospital
  • Bring over yoga mats and stretch with me

ACTIVATE

  • Ask for books & podcasts that learn more
  • Talk about rare diseases and disabilities to educate others
  • Volunteer & engage at my events
  • Be a point person during hospital stays & home

HANG IN

  • Continue to invite me
  • Understand I am living in crisis mode
  • Check in regularly-send a text and be okay without a response
  • Pick me up and take me to the movies
  • Treat me the way you did before

I love all of these and wanted to add a few more that our family thought about:

  • Take the dog for a walk
  • If you see weeds in the yard, pull them
  • Mow the lawn
  • Drop off a cup of coffee or tea
  • Come visit knowing the house will be loud, messy, and chaotic
  • Offer to pick up prescriptions
  • Donate to causes that support our family
  • Offer to stay with our child in one room while we take a shower, nap, or get some fresh air
  • Invite us again, even if we have always said no. It feels good to be included

Recently, Todd and I were able to go to Las Vegas for the weekend to celebrate 30 years of marriage. It took a village to care for Emily while we were away and I am thankful to friends who let me put them down on the I.C.E list for Emily and Justin. I also want to give a shout-out to my dear friend Julie who went above and beyond. She stalked us via text to get our dinner plans. She called the restaurant we were at in Las Vegas and attempted to pay for our meal. Her mission was unsuccessful, probably because she may have oversold us to the staff. She asked them to find the beautiful short woman having dinner with a sexy Papa Smurf. When the hostess had no idea who Papa Smurf, Julie asked to speak to someone over forty. It sort of went downhill from there. She and her husband were resigned to send us a gift via Venmo to cover the meal, but we had a great laugh about the experience. Todd and I will not forget her taking the time to show up for us.

Most of the time, just knowing someone wants to help and is in our corner is enough. Just being there and actively showing up is more than enough. Often a simple cup of coffee and five minutes of connecting with someone outside of the house is all we need to feel connected.

Subscribe to Once Upon A Gene mailing list to get a copy of Effie’s infographic.

Exchange Excuses for Reasons

Photo by Kelly Sikkema on Unsplash

Last night I wanted chocolate. It was after 7 pm. I am not a woman who eats after 7 pm I reminded myself. My brain ignored this gentle reminder. It proceeded to recite why I should eat the chocolate. My mind provided a multitude of justifications.

If you don’t eat it, someone else will. It would be an enjoyable snack as you watch the game. Your team is losing, and it will make you feel better. It is only a tiny piece of chocolate. It isn’t a big deal. You deserve it. A little chocolate is actually good for you, right?

I almost went to the kitchen and grabbed a couple (not just one of course) of the tiny, bite-sized chocolates, but then I stopped. I remembered a recent post I read by Elizabeth Benton, founder of Primal Potential. She shared that our excuses to take one action can also be our reason to choose differently. We can change our thoughts in an instant. It is like turning the channel on the television, but we do not always recognize it. Often we think we are powerless over our thoughts, not the person in control of them. When our mind throws up excuses about why we should or shouldn’t do something, we do not have to listen. We can change the narrative. It isn’t always easy and we will not always do it, but we can.

The beautiful thing is often our excuses are our reasons. 

  • Excuse: I am too tired to eat healthily. I will get fast food.

Reason: I am tired so I will eat something that will fuel my body well.

  • Excuse: No one can take care of my child as I do. I must do it solely.

Reason: No one can take care of my child as I do. I  will teach others how to care for Emily so she can depend on others if I am unable to meet her needs.

  • Excuse: I am tired. I will just sit on the sofa and watch Bravo.

Reason: I am tired. I will turn off the glowing screens and go to bed.

  • Excuse: I don’t have time to take a break. I will keep pushing forward.

Reason: I don’t have time to take a break. I must, or my body will force it.

  • Excuse: No one will know I did not honor my commitment. Eat after 7 pm.

Reason: No one will know I did not honor my commitment. I will know I did not honor my commitment to me and I matter more than anyone else.

Every excuse we have to take one action is also a reason to choose another.  We can choose to change course or go down the same path. We can learn and grow, or we can stay stuck. We can create new habits and neural pathways or continue to stick to the old.

I took just enough pause to reframe the situation. My excuses to do it are also my reasons not to do it. If I don’t eat it, then I honor my commitment to myself not to eat after 7 pm. If someone else eats it before I do, then good for them. My team is already losing, and eating chocolate will not fix it. (Who is this person that cares about a football game anyway?) It is a big deal because you are letting yourself down and not honoring your plan. Commitments to myself are the most important ones. I don’t deserve chocolate. I deserve to choose me. Besides, if I want chocolate when the sun rises, I can have it then. It is not a problem. 

Everyday I can choose to become a better thinker. I can continue to learn and grow. I can challenge my excuses and exchange them for reasons.

“When we change the way we look at things, the things we look at change.”- Wayne Dyer

Decorating My Funk With Some Live Music

Jack Johnson Hollywood Bowl 10/1/22

“If you find yourself in a funk—don’t decorate it.” I came across this quote in one of my journals this week. It is a quote from Elizabeth Gilbert’s book Big Magic. This book is a favorite of mine. It is uplifting, inspiring, and well–magical. Gilbert warns that when you are feeling the blues, it is not usually the best time to get a tattoo of a horse on your ass, shave your head, or dye your hair to match your mood. Don’t decorate the funk. I have claimed this quote as my affirmation all week adding my own spin to it.

For the past several weeks, I have been in a funk. My body has been invaded by something that is creating all sorts of havoc. Shots of antibiotics, oral antibiotics, creams, and potions have not seemed to send the invader packing. I have decided my body is a warm, joyful, and delightful environment that makes everyone feel welcome. I am a walking, talking version of Rumi’s Guest House. Now we have added steroids and I am not as warm and joyful, but the guests do not seem to mind my grumpy disposition. I have decided that while I am in a funk, I will not decorate it. My mood may not be optimal but I am determined to coexist with it.

Todd surprised me with tickets to see Jack Johnson last year. I have always wanted to see him live. I love his vibe and the messages in his songs. The concert was on Saturday night at The Hollywood Bowl which is an amazing concert venue.  Todd also purchased shuttle tickets to allow us to enjoy the evening without the hassle of driving and parking. I made calls and requests to seven caregivers before I found one available to watch Emily for three hours and get her ready for bed. (Justin would be home to assist and care for her after that.) There must be a lot of magical events going on the first weekend of October because everyone had big plans. 

As the date approached, my body was hanging onto the crude. I had to make a decision to either bail on the concert or go and make the best of it. I made the choice to go. I did not want to disappoint Todd. I was not feeling my best and it was a long night. It was not the most comfortable experience physically BUT mentally it was worth the effort. Listening to Jack Johnson play Better Together and Do You Remember in concert was epic and worth the discomfort that joined the party. As the moon came up and the temperatures cooled, the magic of the evening grew. The crowd was lively and excited. Todd was kind, patient, and understanding with my bits of complaining of discomfort. Because we took the shuttle we could not leave early and embraced the long afternoon and evening that did not end until the next day. I chose to decorate my funk with some feel-good, upbeat tunes and time with my husband and I do not regret it one bit. It turns out my funk mixed with some acoustic pop blended well. It was an evening I will not forget that is for sure.

The Beauty in A Pause

“Let’s just take a pause”, he said. As he finished the sentence, the floodgates opened. I began to cry. There I was sitting in the office of this man I had just met for the first time crying “the ugly cry”. There was something about what he said that released fear, anxiety, and frustration that I didn’t even realize I had been holding.

I have developed some health issues over the past few years. They could have been there all my life or maybe they are new. I have no idea and wonder if anyone really does. What I know is, the past few years have been filled with symptoms and the cause has not been determined. I have seen several doctors, including two neurologists, and three rheumatologists.  All of these doctors have used testing along with their expertise to determine what is causing issues. I have a list of diagnoses a page long on my chart. The reality is, no one really knows for certain and each doctor has a different opinion and course of action to take. It has been exhausting. 

As I sat in front of my latest rheumatologist, I thought, here we go again. Every specialist has tried to address the issues and has added medication to manage symptoms. I don’t think things are significantly better with these medications. This time the doctor suggested a different approach. He had read through my chart. He was informed about my prior treatments. The doctor knew about Emily and her disabilities. He had assessed everything and then said with firm conviction, “I think the best thing is…let’s take a pause. Let’s discontinue all medication the other doctors have prescribed and wait and see. We will wait six months and start fresh with labs and a new perspective.”

There was freedom in his words. This makes so much sense. Often, when things seem unclear, when the path is uncertain, it is good to take a pause. When stress and overwhelm creep into my day, a pause can change those emotions. When my thoughts are racing or anxiety takes hold, I take a pause. When I am driving and feel like I am way off course, I take a pause. When Emily is inconsolable or agitated, take a pause. When I feel buried in my job, my life, my responsibilities, then I take a pause. When I feel pain, either physical or emotional, I take a pause. A pause is always the first action toward a calmer state of being. 

I feel best when I pause, listen to my body, take in my surroundings and choose to be in the moment. I see everything more clearly, and the answers seem to come to me. There is much to be learned in the pause. There is comfort, security, clarity, and awareness in the pause. Later we can try more testing, search for answers, and experiment with other options, but for now, let’s take a pause.

Are You Experiencing Caregiver Burnout?

Photo by Anh Nguyen on Unsplash

Caregiver burnout is defined as a state of physical, emotional, and mental exhaustion. It may be accompanied by a change in attitude, from positive and caring to negative and unconcerned. Caregiver burnout can occur when caregivers are not receiving adequate support, or doing more than they are physically, emotionally, or financially able to accomplish.

Often caregivers feel guilty if they take time for themselves. They feel obligated to be there for their loved ones 24/7. Caregivers that are experiencing fatigue, stress, anxiety, and depression may be on the way to burning out.

What causes caregiver burnout? 

Caregivers often are so busy caring for others that they tend to neglect their own emotional, physical, and spiritual health. The demands on the caregiver’s body, mind, and spirit can lead to overwhelm, fatigue, stress, depression, and ultimately burnout.

Other factors that can lead to caregiver burnout include:

  • Role confusion: Many people are confused when thrust into the role of caregiver. It can be difficult for people to separate their roles as caregivers from their roles as spouses, lovers, children, friends, or in other close relationships.
  • Lack of control: Many caregivers become frustrated by a lack of money, resources, and skills to effectively plan, manage, and organize their loved one’s care.
  • Unreasonable demands: Some caregivers place unreasonable burdens upon themselves. Many caregivers see providing care as their exclusive responsibility. Some family members, such as siblings, adult children, or the patient himself/herself may place unreasonable demands on the caregiver. They place the primary burden of care on the primary caregiver without offering much assistance or support.
  • Other factors: Many caregivers cannot recognize when they are suffering burnout and eventually get to the point where they cannot function effectively. They may even become sick themselves.

What are the signs you may be experiencing caregiver burnout?

  • Irritability
  • Impatient 
  • Fatigue
  • Buffering with excess food, alcohol, television, social media, shopping
  • Weight loss or weight gain
  • Loss of focus or concentration
  • Withdrawal from friends and family
  • Insomnia or sleep disturbances 
  • Getting sick more often
  • Feeling blue or apathetic 

This is just a partial list. Every individual is unique. You may experience other signs not included above. Maybe you are having difficulty making decisions. You feel like you cannot do or add “one more thing”. You wish someone would come in and take charge. I know for me, I had thoughts like:

  • I just cannot make one more decision
  • This is too hard
  • I am exhausted
  • I wish I could run away 
  • I need a vacation
  • I can’t keep going like this

These are warning signs that you may need a break. You may be on the road to burnout.

The best scenario is to develop tools and strategies to prevent burnout before you experience it. Below are some tools that can prevent caregiver burnout:

  1. Make plans and automate decisions (automate anything you can).
  2. Set alarms for medications and other care tasks so you don’t think/worry about them.
  3. Hire a coach. It can be helpful to get insight and input from a person that is outside of your bubble. We get tunnel vision and do not see options that are available.
  4. Hire a counselor or therapist. 
  5. Know your limitations. We cannot be superheroes every day.
  6. Seek respite and outside caregiver services. This is vital. I cannot believe how many caregivers think they can do it all by themselves. 
  7. Trust others to care for your loved one. They may do it differently. You may have to try out several to find a good fit (like a good pair of jeans), but it is worth the time.
  8. Share your feelings and your struggles. Do not try to suppress the challenges and the feelings. I always say you have to “feel the feels”. Being sad, angry, mad, frustrated, lonely, and isolated are all normal when caring for a disabled or ill loved one.
  9. Ask for help and be specific about how someone can support you. Example: “Emily has a prescription waiting at CVS. Would you please pick it up and drop it off? I will Venmo the money for it.”
  10. Take time each day to do something just for yourself. It may be just listening to a song that pumps you up and dancing around the living room. Maybe locking yourself in the bathroom for 5 minutes to do a quick meditation or box breathing.
  11. Call a friend.
  12. Lean into your partner if you have one. Share your struggles and be specific in how they can help.
  13. On that note: nurture your relationships with friends, family, and partners. Connection is vital.
  14. Drink water. Move your body. Establish a regular sleep routine.
  15. Join a support group. Meeting with others that “get it” helps you feel less isolated. You realize you are not alone.
  16. Don’t take yourself so seriously. Laugh. 
  17. Look for ways to create joy each day. Some days have “more suck” than others, but you can always find something to be grateful for. Don’t underestimate the power of gratitude.
  18. Schedule health and wellness visits for YOU, not just your loved ones. (I define this as boring self-care.)

If you feel like you are experiencing caregiver burnout, reach out for help. Talk to a loved one, a therapist, a counselor, a friend, or a spiritual leader. Seek resources through your community for added support/care for your loved one. Don’t be an island. Reach out and find connections, support, and resources. Getting help is a sign of strength, not weakness.

You do not have to go through this alone. 

Take the Caregiver Burnout Quiz to see where you are at right now.