Action Lessens the Fear

The last few days, I have not slept well. I have been tossing and turning. Waking up often and having bad dreams. I think Oprah said, “When you know better, you do better.” Well, Oprah, I disagree. My toolbox is full of techniques and protocols to optimize sleep. You can have ample knowledge, but if not used, it is useless. You cannot drive a nail without picking up the hammer.

What routines have impacted my sleep? Why is the Sleep Number App underwhelmed by my sleep readiness? I started watching a limited-run series, The Shrink Next Door. I was intrigued by the trailer for this show and decided to add it to my list of programs. It is about a therapist who has unorthodox and insidious relationships with his clients. The show is dark and twisted. The program is not violent, but it is creepy. After getting Emily to bed each night, I would watch an episode or two. The result was I stayed up past 9 pm each night. I did not follow my evening routines. My protocols were ignored.

The Shrink Next Door is the type of show I generally avoid. Through years of experience, I have learned that I react negatively to these shows. They generate negative emotions. I begin thinking about humanity and injustice. The feelings linger for days after the show ends. My thoughts race.

I finished the series last night and was feeling sad. I was distraught with emotion for a show that has zero impact on my life. I just couldn’t shake my negative mood. The mood lingered as I drifted off to sleep. The result was a series of bad dreams. I awoke at 3:30 am upset and shaking. I was unable to go back to sleep at this point.

The last dream scared me. Todd and I were volunteering at a shelter. It was set up by his work. Several of his coworkers were there. Emily was with us. While we were busy serving meals, Emily disappeared. Panic set in. One of Todd’s coworkers told me one of the volunteers has a shady past. My mind went to a dark and scary place. Because Emily is non-verbal and unable to effectively express herself, I was scared we would never find her. She does not have a cell phone or a way to reach out. I had her identification. Even if someone found her, how would they reach us? How would they know who she is?

I often mention my ability to pivot and adapt. Apparently, I maintain this skill in my dreams. My mind went to work to solve this dream in a positive way. I hopped on the city bus to try to find Emily. I surveyed the passengers. There she was perfectly content with my sister, Carol. My sister tells me she is taking Emily to Knott’s Berry Farm. Carol did not feel the need to let me know. (There is probably more to unpack there.) Just like that, Emily was found. She was safe, and that is all that mattered. I did wake up mad at my sister for something she did in my dream. Have you ever done that? Well, I do. Todd hates when I do that!

As I lay in bed for the next hour, I was thinking about what action I could take to alleviate the fear that I was having for Emily’s safety. I knew the show I watched triggered fear. There is so much I cannot control. I cannot be with Emily every moment. I have to trust others, and I have to live life from a place of safety, not fear. We are safe. Most people are good, and others will protect her when I am unable to. While this is difficult at times, living in fear is not healthy.

I was spiraling in my thoughts, unable to slow them down. About that time, I realized a Pause Breathe Reflect meditation was starting. I am an early riser, yet, I rarely catch the 4:35 am room. I grabbed my earbuds and joined the room. I enjoyed the meditation that was about JOY. Michael invited us to recall a memory that evokes joy. As I visualized a joyful memory, I moved past the fear. I changed my state of mind. As the room ended, I was able to fall back to sleep for an hour. When the dogs got me up to feed them, I was back in action mode.

I bought Emily a bracelet from Road ID a few years back. I quit putting it on her because she did not like it. Today I was determined to locate that bracelet. Road ID is a company that makes identification bracelets for athletes. I discovered it from another parent raising a unique needs child. The identification bracelets are easy to use. There are many band color options, so Emily can match her bracelet to her outfits. I want Emily to be clean, well-cared for, and matching. Hey, it is often the little things on this journey that matter. I believe Road ID is a company that understands that, even if Emily is not their target demographic.

After the rest of the family was awake, I went on a bracelet hunt. I located the bracelet and all the bands. Once Emily was dressed, I added a matching Road ID bracelet. The moment I closed the clasp, I could feel relief. I felt the weight of fear lift. I stepped away from fear and stepped into action. This little action, along with a short meditation, was all that was required to change my mental state. It is amazing the power of our thoughts and the gift that action is to our brain.

Tonight, I am back to my regular bedtime routine. I will turn off my electronic devices by 9 pm. I will set my phone on “Do Not Disturb”. I will follow the evening routine that helps me optimize my sleep. In the words of Donavon Frankenreiter, “I’ll be sleeping good tonight.”

Be a Unicorn or a Craig

Effie Parks, the amazing woman behind the Once Upon A Gene podcast, recorded a special Thanksgiving episode: Turkey Soup for the Soul. This year’s episode was focused on people who went above and beyond to help a family caring for a child with a rare genetic disorder. While Emily is not diagnosed, yet, I submitted a story about a family that supported us in a big and life-changing way when Emily and Justin were small.

In this episode, Effie and her co-hosts refer to these special people as unicorns. I am blessed to have encountered many unicorns in my life. Emily’s disabilities have opened our world to many angels, unicorns, and helpers. The story I submitted is just one of many. Below is the story I shared about the Feldhacker family:

There is a Walker Hayes song called “Craig”. I cannot listen to that song without crying. The song is the epitome of going above and beyond to help out a family in need. The Short family was blessed by a “Craig” in the early years of our journey.

By the time Emily turned 3, our world was upside down. I had quit my job to care for Justin and Emily full-time. With all the doctor visits and therapy, it was not feasible for me to maintain a job. Todd was struggling to run our family plumbing business. He had begun to battle anxiety and depression and we were dealing with a child that had developmental delays. We ended up filing bankruptcy for our business. It was a difficult season, to put it mildly.

Fortunately, Todd is a great plumber. He was able to find a job quickly. It was a Monday through Friday gig and the pay was great. The only issue is that he had to use his own vehicle. We were a one-car family at this point. This would leave me home with two toddlers without transportation. I had no idea how I was going to get Emily to her appointments. I was also scared to be without transportation in case of an emergency, but I told Todd we would figure it out. We needed money to pay the mortgage and put food on the table.

The Sunday before Todd started his new job, our friends stopped by after church. Anna was in one car with her two toddlers. Her husband followed behind in an old, Honda Accord. They got out of the car and told us they had a car for us. We told them we could not accept a car. Ken said, “We aren’t giving you a car! We are selling you this Honda Accord for $1. There was a time we needed a car and a friend sold this one to us for a buck. The only catch is once you are done with it, you must do the same.”

I was speechless (which is rare for me). After some convincing by Ken, we accepted the car. We signed the transfer and paid him $1. That car was not pretty on the outside, but she got the job done. She never let us down. She carried us safely from one appointment to the next for the next two years.

One day Todd came home from work and said, “Billie, there is a guy at work and his mom really needs a car.” Well, we just happen to have one available for the low price of $1.

Thankful for the Memories

My wedding 9/6/1992

Our memories are not confined to square footage. They are not limited to a physical boundary. Infinite storage capacity is included with our brain’s processor. Rarely do we have to delete files to make room for additional ones. Isn’t that a beautiful thing? We don’t have to decide which ones we are going to save and which ones we must delete to make more room.

As I struggle to process your loss, my mind recalls countless memories buried in the archives. The news of your passing has them bubbling up. The rapid flow of memories reminds me of watching Old Faithful in action. The slow bubbles and steam gradually expand. Growing until they are no longer able to be contained. They rise towards the sky in a beautiful display.

We traveled a long season together. Through the teen years, we were attached at the hip. I wonder how many notes we passed during our years together in high school? I know we both still had some the last time we talked. We passed a lot of notes in biology class. I have so many memories from that year. Maybe because it is the only class I remember getting in trouble in. I was a great student, except in biology, but you and Brad Nowell had my back. I sat between both of you in class. We were often chatting and goofing around. Dr. B. knew I did not know the answer (he was correct). Usually, he would call on me in these moments. You or Brad would whisper the correct response into my ear and save my ass. I smile as I recall.

High school was tough for me. On the outside, I came across confident and secure. The truth is I was insecure about my body, my weight, and my economic status (to name just a few). You always had words to encourage and support me. You saw things in me that I did not see in myself. You accepted me. At parties, you would drag my self-conscious booty out onto the dance floor. I have so many memories of us dancing and laughing. You had a way of coaxing me out of my comfort zone. Dancing is something I still love, thanks to you.

There have been weddings and funerals. Trips to Catalina, Las Vegas, Laughlin, Mexico, Mammoth. Camping in the middle of the desert. I am sure there are other destinations that I am excluding. For many seasons of my life, you were my person. When my dad passed, you and Todd helped me process my grief. You and Todd were my anchors.

Throughout our teens, twenties, and thirties, we traveled closely. We celebrated our weddings together. The birth of our children. Traveling to Mammoth with all the kids. We attended dance recitals, concerts, pillowcase-making parties, and birthday parties. As the kids got older, we gathered together less often. It became tougher as Emily got older. The gap between the girls expanded. Our paths separated but we gathered for life events. We were there to support each other when we both lost our moms. While we may have gathered less, love for our families was always present. The Hardy Boys and their families will always be part of my chosen family.

I have much gratitude sprinkled in the grief and sadness. I am grateful that I took that call from you last October. I am thankful we spent hours talking and texting that day. I am glad we shared a deep connection one last time. Nothing was left unexpressed or unsaid. I feel peaceful and grateful for that day. Lastly, I am thankful for memories. The memories we shared never fail to bring a smile to my face.

I will always consider you a friend for a lifetime and beyond. We made so many memories over the decades. I have them to lean on when I miss you. Rest In Peace, Mark. You are a Forever Friend.

Note: The sudden loss of my friend hit me hard. It reminded me of the fragility of life. “Life is short. The world is wide. Make memories.”-Mama Mia

Mark Hardy
April 29,1968 – December 3, 2021

A Badass Woman I Called Mom

Thanksgiving always reminds me of my mom. Her birthday is November 27th. I remember it would be extra special when it fell on Thanksgiving day. She passed away almost six years ago. It is funny that it feels like it has been a lifetime and like it was only yesterday. I am not sure if that makes sense?

Until recently, I held onto a lot of anger and resentment towards my mom. Choices she made or didn’t make. Family dynamics and sibling crap. It’s complicated. I am not sure when I let go of the resentment and anger, I just know it is gone. Maybe as I grow older, I can relate to her more than I did in my youth. Now, as I reflect on the things she did, I feel respect and admiration. 

Pat, my mom, was the first badass woman in my life. She met and married my dad shortly after high school. She never had the opportunity to go to college. I remember my mom loved to write, and she loved learning new things. I was in 4th grade when she decided she wanted to attend college. My siblings and I thought it was a joke. My dad disapproved and told her she could not enroll. He said there was no way she could care for us, the home, and go to school. 

That didn’t stop her. She signed up to take journalism classes at the local community college. My mom did not tell my father. She enlisted a friend to pick us up from school. She taught me how to cook a few meals. I was in charge of making dinner on the days she had class. (I mastered her meatloaf and Greek chicken and noodles recipes.)   She did not tell my dad she was going to school until she finished her first semester with straight A’s. His response, “The kids are alive, and the house is still standing. I guess you can take classes.”

The following semester she decided she wanted to learn to ride a motorcycle. She signed up for motorcycle riding and safety courses through the college. My dad fixed up a motorcycle for her to use. Once she passed her class, my tiny mom could be seen riding to and from classes on her bike. My friends would tell me, “I saw your mom on her motorcycle with her backpack on.”  I was embarrassed. I thought they were making fun of her. 

I was young and self-absorbed. I was mortified by anything my parents did that might embarrass me. Let’s be honest, when you are a teen everything embarrasses you. I did not appreciate the courage it took for her to go back to college in her late 30’s. My mom was the oldest person in all of her classes. Heck, she was older than most of her professors. She completed her AA in Journalism in two years while raising a family and without the support of her husband. 

I suspect this was not easy for her to accomplish. Setting out to do something new can trigger fear and uncertainty. I imagine she was not confident she could get her degree. If my dad found out (and eventually he would/did), he might pressure her to quit. I bet insecurity and doubt rode along with her during the journey. The obstacles she had to overcome, both real and imagined, were massive. I am certain the backpack she carried on the back of that bike was heavy in more ways than one.

My heart swells with emotion as I recount this season in my life. It may have taken me years to get here, but I am so proud of all the things she accomplished. My mom showed me that anything is possible, despite her age, sex, and economic status.  I am honored to say, “My Mom was a badass woman ahead of her time! When I grow up, I want to be just like her.”

When Gratitude Eludes You

Photo by Yura Forrat 

We celebrate Thanksgiving in the United States in November. Stories of thanks and gratitude are abundant. But what if gratitude eludes you? What if in the storm you do not see any clear skies or rainbows? When the world seems high on life, and you are not, then what?

I saw a post that read: If you are having trouble finding something to be grateful for, check your pulse.

There is always gratitude in our journey. I believe that is true. Sometimes gratitude is difficult to access. I empathize with those unable to find gratitude in a situation. There is nothing wrong with you. You are not broken. Sometimes it is difficult to see beyond the hardship.

Three years ago, my strength was tested. I was unable to see anything positive in my situation. I thought the pressure would crush me. I could not find a silver lining. At the time, that was my truth. As I began to write about gratitude today, the memories of that time rushed through my mind. I knew I had to change directions. I decided to be vulnerable. I would write about a time I was not grateful. I feel anxiety about sharing this as I type. As I muster the courage to show the ugly bits, fear and anxiety join the party in my mind. Fear and anxiety have kept me from opening up. Today I decided to be brave and vulnerable. Look at me channeling my inner Brené Brown.

In 2019 my husband was hospitalized. Todd has battled with anxiety, and depression since Emily was a toddler. With proper medical care, his condition was manageable. This time was different. I was terrified and felt alone. I have never discussed the impact the event had on me. I held in the trauma and sadness. It was as if releasing my pain would betray him.  

Todd was in the hospital. Justin was living away from home. Justin had just finished a year at UCSB. He had decided not to continue his studies but was locked into a lease for another year. He was working at UPS and learning some tough lessons about responsibility and commitment. We knew Todd was going to be out of work for an extended period. I was caring for Emily alone. I was doing my best to maintain my duties for my employer. I did not have family members that could help care for Emily.

I was unable to sleep. As my head hit the pillow, the chatter would commence. I was worried about Todd and Justin. The guilt I was carrying was overwhelming. I was too busy caring for myself and Emily. I did not see that Todd was in decline. I had let them down. I was not doing enough. I was not able to be there for everyone. I was failing at everything.

I was concerned about paying bills and the long-term impact of all of it. Todd and I have always worked well as a team. We have worked together caring for Emily. We both had times when we were down, but never at the same time. When one was down, the other would pick up the slack. We both had nothing to give, and Emily needed us. I wasn’t sure how things would progress. Everything seemed fragile and uncertain. I was not able to see all the things to be grateful for that were around me. I could only see the struggles.

As time passed, my perspective shifted. I was never alone. I had the support of the staff from AbilityFirst. The after-school program allowed me to visit Todd at the hospital after work. Staff volunteered to bring Emily to my house if I was running late to pick her up. The company I work for was extremely supportive and flexible. Todd’s supervisor was compassionate and understanding. We had money in the bank to pay our immediate bills. Todd’s brother helped us out financially while Todd was out of work. Todd’s brother flew out immediately to support Todd and Todd’s parents. Justin was not at home and did not have to experience the event firsthand. Emily’s intellectual disability prevented her from comprehending the magnitude of the situation. I had started taking great care of myself in the months prior. I was in the best mental, physical, and emotional state to handle the added stress.

I recently read there are 3 phases of gratitude:

  1. Recognition: When you realize it will be okay. The situation is difficult but you can handle it. You begin to see things from multiple points of view. You recognize how you are in a better position to handle than you may have initially thought. The realization that “things could be worse”.
  2. Acknowledgment: You see some hope or relief in the future. The concept of the light at the end of the tunnel. This gives you some energy to move forward and take steps you may have been unable to take before.
  3. Appreciation: You see who supported you through the experience. You realize you were not as alone as you may have thought. You recognize the people and things that got you to the other side. 

Looking back I recognize that I did go through the phases of gratitude. I experienced all of these. It did not happen with perfect timing. It did not flow with ease, but the gratitude did flow. Beauty and healing grew out of the dark storm. Todd is stronger and healthier. Our family is more resilient and compassionate. Gratitude is always available. Sometimes our focus on the hard makes it difficult to recognize AND that is OKAY.

Holiday Expectations and Stress

The holidays can bring up a lot of emotion. The most wonderful time of the year is often the most stressful time of the year. The actions we choose to cope with or diminish the stress are not always the healthiest. We over-commit, overspend, overeat, over-drink.

Holidays can seem more challenging when you have a family member with unique needs. We feel pressure for our loved ones to act or behave a certain way and if they don’t, we feel guilt or shame.

For years I tried to fit our family into the “typical holiday” box and it was exhausting, stressful, and miserable. I did use diversion tactics that never really worked and left me feeling worse. 

A few years ago I added the word NO to my holiday protocol:

  • No to going to places that were not going to be good for Emily.
  •  No to overspending on gifts.
  •  No to competing with family to buy the “best gifts” when we don’t have the disposable income to do that.
  • No to over drinking to avoid family tension or conflict.
  • No to eating foods that make me feel terrible just to make someone happy or it is expected.
  • No to apologizing when Emily became overwhelmed or anxious.
  • No to decorating my house. My home is small and the work it took to decorate and find a place to store the space the decorations took up was not enjoyable
  • No to buying gifts out of perceived obligation.

I began to say YES to:

  • Yes to buying a gift for friends and family when it is not a holiday. We call them “love gifts”.
  • Yes to staying home if that seemed best for our family.
  • Yes to connecting with friends and family.
  • Yes to making memories that last beyond the opening of gifts.
  • Yes to going away as a family on a road trip the week of Thanksgiving because it is something we enjoy.
  • Yes to lights on my house because I love it!
  • Yes to joy and fun.
  • Yes to feeling good in January when the bills come and I did not overspend. 

Here are 8 tips that can set you up for a successful holiday season:

  1. Set boundaries: Decide what events or family gatherings you will attend. Set a limit on your commitments.
  2. Avoid family conflict: You don’t have to engage. I use what I call the “Emily card”. If the conversation or tension gets high, I will excuse myself to take Emily for a walk or to the restroom. I also will volunteer to do the dishes or clean-up.
  3. Focus on what you can control: There are only two things you can control. The first is your thoughts. The second is your actions. You cannot control what anyone else says or does but you can decide how you react to it or what you make it mean.
  4. Say NO: We covered this already but it is a big one. Say no often. Throw it around like confetti. 
  5. Think of ways to create memories and create the feeling you want during the holidays. 
  6. Ask your family what matters the most to them during the holidays. If they could only pick one thing to have, what would that be? For me, it is the lights on the house. Justin wants to make his stuffing. Todd is happy when I put the felt Advent calendar up that his mom made when he was a child. Emily enjoys the sweets that accompany gatherings. 
  7. Don’t overspend: it is easy to do. We do not need to overextend ourselves by buying bobbleheads and tchotchkes for everyone we see during the holidays. I have learned that people buy what they want. When I discover the perfect gift for someone I will get it for them. 
  8. Maintain or add healthy habits. Make sure you are getting adequate sleep. Hydrate yourself. Make healthy food choices before and after your celebrations. When you are at family gatherings, indulge in the food or beverage that matters most. Don’t use the holidays as an excuse to eat a bunch of things that are mediocre. Savor the food that is special or sparks joy.

Plan your holiday events so that you can reduce stress. Let go of perfection and go with the flow. The more you release the expectations of what you “think should happen” or “how we are supposed to show up”, the easier it is to go with the flow. Focus on the people and the memories.

Finish Strong

We often throw in the towel on all of our goals around Halloween. We decide the last sixty days of the year don’t count or matter. Have you had any of these thoughts:

  • 2021 is almost over. Why bother now?
  • It’s “the holidays”. I shouldn’t try to lose weight or eat healthily or move more. 
  • I will wait for the new year and start fresh.
  • It is too stressful and busy to finish the things I want to get done. 
  • I need to save (money, time, energy, etc.) for the holidays.

These thoughts seem factual, but are they? Think about it. “The Holidays” account for only a few days. There are sixty-two days from Halloween to December 31st. That is close to 17% of the year. When you think about it like that, the time between Halloween and a new year is significant. Waiting for another day/time/season to take action will keep you stuck in the same location you are now. 

What could you accomplish in the last two months of 2021?

What finish lines could you cross in 17% of a year? 

Ways to finish 2021 strong:

Pull out your 2021 goals and analyze the data. Are you close to making some of them? Is it possible to cross the finish line on any of them? If you have not set any goals for 2021, what is one goal you could accomplish in the next 60, 45, or 30 days? Use the following steps to recommit to your goals going into the final stretch:

  1. Be specific in what you want to accomplish.
  2. Reset your motivation and dedication to your goals for the last 60.
  3. Create a simple plan and map out how you can get there.
  4. Find a way to track the data. Challenge yourself to reach the milestones.
  5. Increase accountability during the holidays. Don’t sideline your accountability.
  6. Schedule it. If you want something to happen, then block off the time to make it so.

You may need to let something go to complete the thing that matters to you. Look at your planner/calendar. Are there commitments that you made that have run their course? As the leaves fall from the trees and we enter a new season, we can do the same. Let some things fall away. Let them go.

What is a healthy habit you can add? Something easy that does not require any time to implement. I am not competitive with others, but I do thrive on competing with myself. I find joy in challenging myself to level up on my wellness routine.

Here are a few small and easy habits that do not require much effort and will give you a solid return on your investment:

  • Commit to drinking 64 ounces of water every day through the end of the year
  • Commit to turning off electronics at a specific time each evening
  • Challenge yourself to do planks every day 
  • Go to bed 10 minutes earlier than usual
  • Start your day with gratitude
  • End your day with gratitude
  • Add a 5-minute meditation a day for the rest of the year
  • Switch one calorie-loaded drink for a glass of water
  • Take a dance break or standing break every hour at work.
  • Do 10 squats while brushing your teeth
  • Wake up 5 minutes earlier for the rest of the year, even on weekends

Finally, I am big on self-care (not grand and exciting self-care). If you follow me on socials, know me in person, or read my work, you know I am a fan of boring self-care. I encourage caregivers to do things to improve their health. A healthy caregiver is a better caregiver. In the spirit of that, what well-checks have you postponed or procrastinated in scheduling? Make a game to fit in as many as possible before the end of 2021. Your body will thank you.

Here’s to finishing 2021 strong and moving into 2022 with habits that will propel you across more finish lines.

Caregiver Burnout: Understand it. Prevent it.

Photo by Nataliya Vaitkevich 

Caregiver burnout is 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. Burnout can occur when caregivers don’t get the help they need, or if they try to do more than they are able, physically, emotionally, or financially.

Many caregivers also feel guilty if they spend time on themselves. They feel obligated to be there for their loved ones 24/7. Caregivers who are “burned out” may experience fatigue, stress, anxiety, and depression.

What causes caregiver burnout? 

During pandemic lockdowns in 2020, I believe the loss of support services triggered my burnout. Tasks and care I delegated to others were no longer an option. I did not have the support I needed to care for myself and my family. I know my limits, but the situation required me to push past them. Emily cannot meet her needs on her own. I carried the weight of meeting her needs, my job, family, at the expense of my own needs.

Caregivers often are so busy caring for others that they tend to neglect their own emotional, physical, and spiritual health. The demands on a caregiver’s body, mind, and emotions can easily seem overwhelming, leading to fatigue, hopelessness, 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 role as caregivers from their roles as spouses, lovers, children, friends, or 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, in part because they 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 also may disregard their own responsibilities and place burdens on the person identified as the primary caregiver.
  • 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. We are all unique and you may notice things not listed that may be a sign. 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 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
  • My bandwidth is tapped out

These are warning signs that you may need a break. You are experiencing caregiver burnout. The good news is you do not need to go to a retreat or spa for an extended period of time to get relief. Developing some simple strategies are usually enough to reduce the burnout and stress.

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

  1. Make plans and automate decisions (automate anything you can). Habits are great tools. Create ones that make your life easier.
  2. Set alarms for medications and other care tasks so you don’t think/worry about them.
  3. Hire a coach. Sometimes you need someone to help you see things differently. 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. If 2020 reinforced anything, it is that I know I cannot care for Emily alone. 
  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, 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: friends, family, 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.)

Bonus information! I began changing my thoughts about caring for Emily. I started changing the conversation in my head. I know it may sound crazy, but it worked like magic. Changing my thoughts, changed everything:

  • It is a privilege that I get to care for Emily.
  • I chose Emily and love her just as she is. 
  • Caring for Emily is a gift I get to give her. I do not have to do it, but I am choosing to do it as long as my body will allow me to.
  • I can do this joyfully or angrily. It takes the same amount of effort. I choose joy.
  • Emily is worthy of my love and compassion. She deserves to be cared for from a place of love and not resentment. (THIS WAS A BIG ONE: LETTING GO OF RESENTMENT.)
  • I never would have thought I could do this, but I do. I show up daily and get it done.
  • I am stronger than my toughest days.
  • Taking time to care for me makes me a better caregiver.
  • I cannot pour from an empty pitcher.

If you feel like you are experiencing caregiver burnout, reach out for help. Talk to a loved one, a therapist, counselor, friend, or 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. 

*Go to We Are Brave Together to sign up for support, connection.

Reach out to me if you would like to inquire about personal coaching: Conversation4change.com

A Care Plan is Vital for Caregivers

AbilityFirst Participants: Chris Valle and Nick Laguna

We must take care of ourselves so that we can care for others. We cannot pour from an empty cup, yet we try. Todd and I have worked hard to develop a care plan. We have created a community to support our family. This allows us time to take care of our needs. AbilityFirst is a local nonprofit that has been an integral part of our care plan for Emily and our family for years.

AbilityFirst is a program that supports children/adults with physical and intellectual disabilities. Last week, I had the honor of speaking at an AbilityFirst fundraiser. I discussed the impact they have had on our family. I shared how difficult the closures of school, support services, and the AbilityFirst program was on our family. I always say it takes a village to raise up Emily. The lockdown negatively impacted our families mental health and wellness. Programs like AbilityFirst are key to supporting the mental, physical, and emotional well-being of our family. 

Adopted Ben right before my talk
In the middle of great friends:
Kathy and Darrel
Susan Short, Guild Member & Emily’s Nana
April Stover, Senior Director of Programs

Here is the message I shared. It is my hope that every caregiver has a wonderful support community. Our family is lucky and blessed to have amazing support. We are grateful to be able to lean into it as school restarted and many services have resumed after a long year.

RAINBOWS FOR ABILITYFIRST:

My daughter, Emily, has been a participant at AbilityFirst for 15 years. I cannot believe it has been that long. I love the opportunity to share the impact and support AbilityFirst has provided for our familyThe pandemic of 2020 magnified the importance of AbilityFirst.

Our family is not unique. I do not think anyone in the world can say that the pandemic did not impact their life. We have all suffered losses. The loss of friends and family. The loss of gathering in-person for live music and events like this. We missed weddings, funerals, graduations, cancer screenings, well-checks, dental cleanings to name a few.

Overnight the world seemed to stop. 

In our home, we experienced many repercussions. In 24 hours every resource that Emily had access to was gone. Think about how difficult it was for you to adapt to the changes that happened overnight. Imagine if you had an intellectual disability that prevented you from understanding the circumstance. You wake up one morning and your bus doesn’t come to take you to school. You don’t get to see your teacher or your friends. No one comes to visit you at your home. You can’t go to horse therapy or physical therapy. Your after-school program is gone. You cannot go inside any store because you won’t keep a mask on and no place will make an exception. You are a prisoner in your home and you don’t understand any of it. You are abandoned. This is how I can only imagine it was for Emily because she drastically changed during this time.

My Sweet daughter became angry. She was agitated. Her anxiety increased. She became outwardly distraught and depressed. As her primary caregiver, I now had the job 24/7 to meet her needs. I was expected to fill the roles of every person in our care village. We had no external resources, and we had a daughter who did not understand any of it.

I consider myself a good mom and caregiver. I love caring for Emily, but I learned a long time ago that Emily’s care was more than a one-woman job. My ability to meet her needs and my own needs was not possible. Yet, this is where we were.

I struggled through several weeks running myself ragged and juggling all the things as best as I could. At some point, the pressure, overwhelm and exhaustion took over. I felt trapped in my life and in my home for the first time in years. I could not concentrate on my work. I was losing my patience. I was struggling to be empathetic and compassionate towards my family. I was experiencing caregiver burnout. 

Caregiver burnout is a state of physical, mental, and emotional exhaustion. Left untreated, it can lead to compassion fatigue. You can begin to get negative and lose your ability to care or have empathy for your loved one. You shut down. It is a survival mechanism. I felt myself on the brink of compassion fatigue. 

I could not continue to operate like this. My battery was empty. I had nothing left to give. Something had to change. 

We had a family meeting to discuss Emily’s care. We made a plan for me to get out of the house each day. Even if that meant sitting in my car in the driveway. We decided to take a risk and open our home to a few outside people to help care for Emily. I was able to concentrate at work, which had been a struggle for the last 3 months. We had several video visits with Emily’s doctor to try different medications to manage her agitation and anxiety. We had minor success with these tools, but Emily was still not herself. She was still discontent. She wanted her life back. She needed to get back into the community.

After almost a year, AbilityFirst began offering 1:1 community services. It was only a few hours a couple times a week, but it was enough to start seeing changes. Emily was still angry and agitated at home, but she thrived on her outings. She was in her element. I was able to breathe and feel relief. I had time to do more than my work tasks. I had a few minutes to hear my thoughts. I was able to pause, breathe, and reflect.

Since school started back in September and AbilityFirst is offering program 5 days a week, Emily smiles again. She laughs. She is happier at home because her time there is limited. I can take better care of myself. This makes me be a better caregiver to Emily. I am caring for Emily from a place of compassion, empathy, energy, and gratitude again.

The gap that AbilityFirst fills in our family care plan is vital. We rely on them to support Emily in ways we are unable to. The services they offer, help us maintain stability and wellness in our home. Everyone is happier and healthier: mentally, physically, and emotionally.

It is through your support they can continue to support caregivers and the ones we love dearly. On behalf of all the families that AbilityFirst serves, I want to thank you for your generosity. You are rippling change, one family at a time… so keep on rippling…..Because Ripples Make Waves.

AbilityFirst Staff (Emily’s Crew: Jamie and Sommer)
Bidding on Ben 30 seconds before I spoke!

You Always Have Something to Give

I have been thinking about Lucky all weekend. I was wondering if the time was right to share his story. When he passed away in February, I could not do it. I cannot begin to express the impact that ragged, four-legged, furry misfit had in my life. I have shared space with a lot of pets during my life. Lucky was the best of the best.

Each pet that has come into my life has given me more than I have ever given them. They each left a different impression and impact. Some of them shaped me into the caregiver I am today. Others cared for me more than I did them. Lucky definitely was in that category. He lifted me up and held me when there was no one else I could turn to.

I grew up poor. There were always more bills at the end of each paycheck. I remember my Mom mixing powder milk into the last ounce of milk in the gallon to hold us over until payday. I grew up without money or material possessions, but it had a whole lotta love, and our basic needs were always met. My parents were champions of the displaced, discarded, unwanted. Our tiny, run-down 400 square-foot home that my Great-grandfather built housed many souls, some two-legged and some four. Every space in our house contained a functional piece of furniture. A place to sit, eat, or sleep. We did not have anything that did not serve a purpose inside the home. A sofa by day was a bed to a pet or human by night.

We were too poor to get our pets from breeders or pet stores. Our pets were animals living in the streets that needed a roof and a meal. My siblings and I scooped them up and brought them home. Sometimes Mom or Dad did the scooping. A posse of poor, lost souls that found each other and banned together.

One of the long-time occupants in our home was a black cat named Charlie. This cat was one of six in a litter of kittens one of our other tenants delivered. She was the runt of the litter. We did not think she would survive, but she did. I begged my Dad to let me keep her. Charlie let me dress her up in doll clothes and carry her around like a baby. Charlie snuggled under my neck until I was asleep. Once I was sleeping, she would sneak out of my room and stay up with my Mom. My Mom’s hobby was writing. She would write after us kids went to bed. Sometimes she was up until one or two in the morning. When Mom retired, Charlie would come back into my room and nuzzle my neck. I was none the wiser. I told the story that she never left my side. When I was an adult, my Mom shared that Charle would help her write at night.

Charlie outlived my Dad. She survived being hit by a car. She was tiny but tough. My Mom and Stepdad kept Charlie when I moved out of the house. They sighted “possession is 9/10ths of the law” or some other thing parents say. Every time I came home, Charlie greeted me in the driveway. She died not long after Todd and I married. I remember my Stepdad, Joe, calling to tell me. He came home from work and found Charlie was clinging to the window screen. She must have had a heart attack. He said, “Billie, I need to tell you that Charlie passed away, but she died hanging in there.” His humor in sharing the news made the passing a bit easier to process. To this day, when I think of that story, I still smile. My mind conjures up a cartoon of a cat with arms and legs sprawling in the shape of an X.

Our family did not have much when I was growing up, but what we had, we shared. My Mom never denied that we were poor, but she always told me that there is someone out there with less than you. Her attitude was you always had something to give. My parents opened our home to anyone in need without knowing how they would do it or if it would work out, but they said yes. I acted on impulse and took a page out of their book.

This weekend I adopted a rescue dog. He was adopted last year. When his owner was evicted from his home, he was left behind. He is a terrier mix. He is the same size as Coco. I thought he would be a good fit for our home. Actually, I was not sure he would fit in at all. He was nipping at everyone that came close, but I could see he wanted to be loved. I saw a soul that had been abandoned. He was discarded and displaced. I could not leave the event without knowing this guy had a chance. My mind said no, but my intuition was screaming yes.

Now I have a senior dog, Coco. A fifteen-year-old poodle and a new member of the house, Ben. A name that Todd got the honor of giving him. I was told this dog liked men. My girlfriend, Kathy, thought Ben would get along well with Todd. I agreed. Todd and Ben had a tough start. He got a little protective of me from the get-go and was aggressive with the boys. Todd tried to restrain him, and that did not go well. Todd has eight puncture wounds in his right. Todd definitely lost the battle. I told Todd I would contact the rescue. I would let them know that Ben was not going to work out. As I looked at Todd’s bruised and bloody hand, I felt guilty. Todd said we needed to give him time to adjust. He has been abused and abandoned. He definitely has trust issues, and he was distressed. He was scared, cornered, and attacked. We cannot give up on him yet.

Ben seems to be adjusting quickly to our home. As I sit here writing well past my bedtime, I think of my Mom and Charlie. I am on the sofa using my iPad (times have changed). I am supporting my iPad on my left thigh. Ben is asleep on my right thigh. I guess the apple did not fall from the tree. I have a soft spot for those that have been discounted and discarded just like my Mom did. I know Todd does too. It is one of the things I love most about him.

At some point in our lives, most of us have felt abandoned or discarded. We all remember someone that came through for us at that moment. Maybe it was two-legged, maybe four. We all deserve a chance to love and be loved. I have no idea what will happen on this journey. I do know that opening my heart to another soul has never been a bad thing. It has always taught me a lesson, helped me grow, or added love I never knew existed.

On that note, I think this article was supposed to be about my Lucky Boy. He added more to my life than I ever expected. He helped me grow. He taught me lessons. He was there for me during one of the darkest seasons of my life. I will never forget his energy. His love. His devotion. His story deserves to be told, but I am not ready to go there. When his story is told, it will be epic. Stay tuned.