Conversation for Change

From Martyrdom to Mindfulness: Embrace Gratitude

Writing is something that has always brought me joy. Taking pen to paper or tapping out words on a keyboard are tools I have used to process the experiences in my life. The good. The bad. The ugly. For the past several months, I have chosen to keep the thoughts in my head. Rarely have I taken a moment to spit them out. The reasons are many and include thoughts like:

I have nothing to say.
My words do not matter.
I don’t have the time or energy to do that.
There is so much noise, and I do not need to add to it.
The world is a mess, so why bother?
AI is taking over the writing world, and my words do not matter.
I just don’t feel like it.
Life is just hard right now.
If you don’t have something nice to say,…

“The martyrdom life is not a hard sell for extreme caregivers. Because it is easy to complain and wallow in self-pity…”

My thoughts and feelings have been stuck in the muck of uncertainty and self-pity. Embracing the muck is a slippery slope. Watching a reality competition with my husband this week, I experienced a moment of clarity. The competitors were challenged to traverse a tiny wood beam holding a metal case and deliver it safely to the other side. If they were to fall off, a pit of quicksand was waiting for them. Every competitor fell. The beam was not much wider than a toothpick, and the odds were stacked against them.

The thing about quicksand is that those who submitted to it sank further down. It pulled each one deeper into the yucky muck. One player, David, explained that to conquer the challenge, you must fight to stay on top of the mud. He quickly worked to get his legs out of the mud by falling on top of it. Now horizontal embracing the sloppy brown mess, he pulled his legs out and glided atop the mud while pushing the metal case in front of him.

The longer you stay in the muck, the deeper you sink. As I logged into my website to write, an article I posted, The ABCs of Caregiver Gratitude grabbed my attention. As I read my words from August 2023, “The martyrdom life is not a hard sell for extreme caregivers. Because it is easy to complain and wallow in self-pity…” I have been playing the martyr in my life. Looking and seeing everything that is wrong. I have not been delighting in the countless blessings, joys, and gifts each day brings.

Life’s struggles have been my quicksand, and I have continued to sink deeper. Like the competitor, I know how to get unstuck. I know that clinging to gratitude and choosing joy will help me rise above the sand and help guide me effortlessly over the challenges without being dragged down.

Writing these words is a small step in pulling myself out of the muck. It will take some time to emerge completely, but the process has begun. Today, I will Choose Joy.*

*This month Michael O’Brien, founder of the Pause Breathe Reflect, is selling his Choose Joy shirt in a pop-up sale to raise money for Love Your Brain. ALL PROFITS will go to Love Your Brain which is an organization helping survivors of TBI feel whole again by building resilience through community.

I know two things for sure. 1) Helping others is always the right thing to do. 2) When I choose joy, life is smoother.

A Thief Called Dementia

Wide awake at 3 am. The dogs are hogging the bed. My husband is snoring, and my right foot is dangling off the side of the bed as I hug my pillow to keep me on the mattress. I realize my body is hovering on the edge like a coin on the coin drop machine at Dave & Busters. I am about to fall off the edge. One more push and I will roll to the floor. Sleep has been elusive for the past few months. Is it because I have become a coin in an arcade game or the stress of current circumstances? Maybe my post-menopause gifts are to blame. All of the above? The result is my morning routine is off.

I am dwelling on a call I missed yesterday morning. My call was scheduled at 6 am to catch up with a good friend. Because I was up half the night, I fell into a deep sleep after Todd left for work at 5:30. The friend called at 5:59 am (while my phone was still on DND). I was sound asleep. My DND turns off at 6. If only she had called a minute later, I would have answered. Such is my world right now—everything is off by a minute.

I recognize there is goodness in my life and gifts in this season I may be missing. I am grateful for the good, but the past few months have been heavy and challenging. My in-laws have experienced challenges with their health. Most recently, my father-in-law was hospitalized due to heart issues. The gaping holes in their care plan came to light. It was a gift in the darkness.

Todd and I have spread ourselves thin filling holes that are not fillable by us. As Emily’s primary caregiver, the time I can devote to caring for my in-laws is limited. I have been making them meals, taking them to medical appointments, and working hard to prevent adding additional stress to my husband. His anxiety and stress levels are hitting critical in this period of unrest and uncertainty. I am burning out trying to juggle things that were never mine to carry in the first place.

We have found and hired extra care to come into my in-law’s home to help care for my mother-in-law and reduce some of the caregiving burden from my father-in-law. Feel free to judge me for using the word burden. I get it. I struggled to find another word, but the fact is, this thing called Dementia is an ugly beast that strips the ability to care for oneself and puts that on another person. It is a burden that one person cannot carry long-term, especially if they are in their late 80s with health conditions of their own.

The cost and stress of having strangers in the home 20 hours a day is taking a toll on my father-in-law. The fact that he cannot care for his wife alone fuels his guilt. It is painful to witness, and also, I get it. I see him and understand. I watch him pour his cocktail a little earlier every day, and I see him. I understand. Until you are in the position to be the lifeline for someone you love, you will not understand. I have been in his place. It is different, yes, but I see him. All the emotions you carry as you fight for and care for someone who can no longer do it for themselves is taxing. The physical tasks are exhausting. Asking for and requiring help creates pain and guilt because you cannot carry the burden solo.

Emily has always been disabled. She has always needed care, and we have grown into the role of increased care. We have slowly journeyed together as her care increased.

Dementia came on fast and suddenly. It quickly stole my mother-in-law’s abilities. Almost overnight, her ability to communicate effectively and walk was taken from her. That is a tough pill to swallow. I watch my husband, his brother, and my father-in-law struggle as they watch the woman they love slip away a little at a time. She is there, but she isn’t. Flashes of the woman I remember come through like flickering lights. It is hard. It is painful. It is devastating.

This week, she will be transitioning to Memory Care. As the family discussed it with her, she answered in a childlike voice, “I don’t want to go.” It broke me inside. It broke all of us because we didn’t want her to leave either. We believe this is best for her and my father-in-law, but it doesn’t make it easy, and it doesn’t feel good.

My mom always said, “Sweetie, life isn’t fair. Get used to it.” As we work to ease the transition, I will take my mom’s words with me. I will continue to show up to the best of my ability cause isn’t that all we can do? I hope and pray that the transition improves the situation. My rubber band has been stretched to its limits, and my mind, body, and soul need a break.

Fallout After Loss

My Dad passed away when I was a junior in high school. While I was only sixteen, I had the maturity to understand a little about grief and processing emotions. I never thought this shouldn’t have happened, and I did not argue with the reality of the situation. I accepted that life is unpredictable, we do not have any control over who goes and who stays, and my love for my Dad will always keep him alive in me. His physical absence did not dissolve my love for him, and death could not destroy the memories.

Recently, I have been reflecting on the year that followed the loss of Dad. It is fascinating to look back with the passing of time and a different perspective. I was able to share my feelings about my loss easily and openly. Maybe I am an old soul, but I knew there was power in accepting the grief and letting it flow. Some of my choices were questionable following the loss, but my ability to embrace and process my grief was on point.

Witnessing how we each processed the loss was fascinating. The experience was unique to each of us. My brother, who was in a rebellious period, spiraled. He got into trouble and quit going to class. He felt guilty about being home when my Dad died and not being able to prevent it. His guilt and volatile relationship with my Dad impeded his ability to process his emotions healthily.

Mom could not handle the discomfort and overwhelming grief she experienced inside the home, and she moved out of the house. You heard that right. Mom moved out and left my sister, nine years my senior, in charge. It is crazy to share this truth, but it is my truth. My sister, who was a mom by the time she was my age, preferred the role of classmate to interim parent. She was just one of the kids in my high school posse, and being nine years older, well, that had some additional perks for my social circle.

I reached out for support, journaled, and allowed myself to feel the pain. I also made a few bad choices. My brother raged and became defiant, and I wonder if he has ever come to terms with the loss of our Dad. My sister became slightly irresponsible and decided to live the teen years she missed out because she was raising babies. My Mom needed to escape anything that reminded her of my Dad. She rented an apartment with a friend. She worked and played. Mom volunteered and got involved in activities at my high school. This was a rarity in the 80s. Parents didn’t hover over us. Most were hands-off and out of sight.

As I attended the opera at the theater this past weekend, all these memories surfaced. While Mom loved the opera, we didn’t have discretionary income to spend on tickets. Courtesy of a paid mortgage, and life insurance, Mom now had a little jingle in her purse. She took me to the opera with her because I was the only one who she could convince to go.

Mom agreed to chaperone a class trip to San Fransisco for a DECA Conference. She took all my friends to a fancy dinner at Fisherman’s Wharf. She bought a gorgeous brown suede coat with a fox fur collar. She loved that jacket and would wear it on our evenings out to dinner and an opera. She also bought me a Member’s Only messenger bag. It was a cherished possession for years. I felt like Dolly in her Coat of Many Colors carrying that black bag on my shoulder.

I was successful at navigating my grief functionally, and I also benefited from the dysfunction that surrounded me. My brother’s behavior and actions made my choices look like preschool playground antics. My sister had become my alibi, chauffeur, and supplier of alcohol for parties with friends, and I was getting Mom’s time and attention. More attention than this middle child had ever experienced.

The loss in the family was the same, and yet, it was completely different. None of us dealt with it the same. Our grief journey was different depending on the tools we had in our toolbox, the place we were in our lives, our emotional maturity, and our relationship with the man we had lost. The loss blew up the life we knew. It shattered our family unit. We all scrambled to find a way to survive and thrive the loss and create a new normal.

Grief, it’s like Glitter. Oh, what a mess it makes.
Patrick Droney

Creativity, Boredom, and Sunday Supper

When did life get so complicated? How can we be connected 24/7 and yet, many of us feel lonely, isolated, or depressed? In this season of winter, I have been reflecting on my childhood. Every generation loves to point out things that have changed since they were young. Usually, it is to highlight how much better today’s kids have it. I mean, I get it. We didn’t have remote controls, we were the remote controls. Our exposure to information was not on a 24/7 cycle and things were not Automatic.

In many ways, I think life was easier in the 70s and 80s when I grew up. Today, we have access to almost anything our hearts desire 24/7. We can shop online anytime. We do not need to leave our homes to get food, clothing, or even toilet paper. Almost anything can be ordered and delivered to our home without leaving our sofa or putting on pants.

Entertainment and information are available every second of the day from a 4” x 6’ glowing box that we keep attached to our hip. Our phones have become a part of us. An extension that we remove only to charge the battery. Heck, most people take their cell phones into the restroom. There is no escape from stimuli coming in.

Patience has become obsolete. Anticipation is passé. Creativity is fading. Our minds are not required to remember anything, except passwords, and because our brains have atrophied, we cannot do that well.

Aren’t you being a bit cynical? Probably. There is value in information. I am grateful my son did not have to lug 30# of books to and from school every day, but then again, we were tougher for it.

There is so much we gain by interacting with others in real life. There is value in being bored and left with nothing but your mind to entertain you. There is beauty in not having the answer to every problem right at our fingertips. Unanswered questions leave room for imagination and possibility!

I was interviewed by Elaine Pardi today in the Mind of Curiosity room on Clubhouse. Elaine brought up the topic of childhood. She wanted to know what activities I enjoyed as a child. I loved using my imagination. I didn’t have lots of toys or material things. Our family was poor, but I was a rockstar in my room with my hairbrush as a microphone singing along to my 8 track beats. When friends came over, we would make up games, sing, create, and use our imaginations.

One morning, my brother and I decided to turn my Dad’s recliner into a ride at Disneyland. My brother found an old electrical cord. It had a plug on one side and frayed wires on the other. We shoved the frayed wires down the side of the my Dad’s chair and plugged in the cord. We sat in the chair pretending we were on Space Mountain. Our game was short-lived when it quickly turned into Fire on the Mountain, but we lived, and the story we now have to tell.

I am not saying that it would serve our children to give them hot wires, blow torches, or matches to play with. But time connecting with our minds and other people, and less with devices, would probably be a good start.

Growing up, people always dropped by our house. They did not call first and warn us they were coming. A knock on the door, and they were invited into the house–The REAL house. Not the home we allow others to see only through an Instagram filter. There may be laundry on the sofa that they helped my mom fold so they could sit, have a cup of coffee, and conversate. It was simple.

Dropping by someone’s house is almost unheard of. People rarely even pick up a phone and call one another. They text. Unannounced visits and phone calls are considered invasive or rude.

A few months ago, I decided to change how I show up. Lately, you might just hear my voice because I am picking up the phone more (well when Emily is quiet enough to allow this form of communication). I am hosting We Are Brave Together meetings in my home without much planning or preparation. I set the date and time, put out some snacks, and let the conversation and the company be the center of attention.

I am hosting my in-laws for Sunday Suppers. I let go of the idea that I must create an elaborate meal and plan activities. We simply share a meal together. Nothing fancy. There are nights when I order in pizza and we work on a puzzle together. I have gained so much insight from these dinners. (More to come on those in the future.)

We do not have to be slaves to our devices and to automation. We can choose to turn off the screens sometimes. We can opt-in on meeting face-to-face and share a cup of coffee, fold laundry together, or maybe belt out a song out of tune together. We can practice patience, anticipation, and boredom and see where it leads. We might create something new or discover something about ourselves or others.

Crossing a Caregiver Threshold

My nose alerts me to what awaits on the other side of the door before my hand ever reaches the knob. Before opening and crossing the threshold, I stop and make a choice. It can be a Manic Monday or Easy like Sunday morning. Taking in a long pause, hold for a beat (or two), and release the breath slowly and audibly. Let’s do this.

“Good morning, Princess Stinky. Did you sleep well?” The small talk continues as I prepare for the task ahead. First, I unfold my thick exercise mat and carefully cover it with a blue waterproof chuck. Gathering supplies is next. Wipes, wash, cream, a diaper, pad, and gloves. Oh, don’t forget to grab a plastic bag and today’s outfit from atop Emily’s dresser. Her once-empty floor is now covered with strategically placed items. I work with speed and precision, accompanied by the sound of grinding teeth and the rhythmic banging of my daughter’s head on the mat. I take a moment to express my gratitude for the two inches of padding cushioning Emily’s head and my aging bottom from the unforgiving wood floors.

Next, I wrangle each leg into Emily’s pants by rolling her side-to-side, pulling them up her body inch-by-inch as she resists every pull. She flexes her foot inside the pant leg, and we are at an impasse. She throws in a few gentle kicks at me for good measure, but I overcome the obstacles, and soon her waistband is almost to her belly button. Good enough for now. I stand up, help her to sit up, and now we tackle the top half. I slather her in lotion and deodorant before attempting to put on her blouse.

I take a few more breaths and open the Spotify app on my phone. The sound of upbeat music will be my assistant as I press on. Making sure the tag is in the back, I lasso her bobbling head with the collar of her shirt as I grab her left arm and attempt to put it into the sleeve before she realizes what I am doing. Too late. She makes a fist and has a death grip on the inside of the shirt sleeve. I peel each finger back one by one. Now, the right one. She sways and wiggles countering my every move and action as if her goal is to make it as challenging for me as possible. She is in it to win it.

With her clothes on, mostly, we move on to the most difficult task—the hair! I grab her matching hair ties and two necklace options I selected the night before, and Emily makes her selection. I glide the necklace over her head, and she resists, but with less vigor than the shirt. As the brush makes contact with her beautiful, but knotted, long brown hair, she starts rocking, yelling, and banging her feet on the floor. I am getting FULL Drama Queen action now.

Our neighbors must think I am torturing her, and in Emily’s world, I am. “Emily, caring for you and getting you ready is something I do because I love you. I know it is hard for you, but I would love someone to style me and do my hair every day.”

Lastly, I clean her face and apply her daily potions and lotions. Her fight continues, and I nearly get lotion in her eye. Grateful to dodge that bullet, I let her know what is next. “Emily, we are going to stand up now. You are going to help me, right?” I take a big breath in (there is a lot of breathing required to get her ready), grab under her arms, and lift her up. She matches my lift by dropping her weight. Her 105# frame dangling from my arms. I drop her bottom to the mat and we try again. Once again, she drops her weight. Her bottom hits the floor. “Emily, enough. We are standing up. Stop fighting me. Let’s do it this time.”

Now, I am in a full professional weight lifter stance. I walk up behind Emily and visualize the 105# barbel in front of me, and I am determined to lift it. I bend low at the knees, take a big breath in, grab under her arms, lift and move her up and forward simultaneously. She tries to counter my actions but finally decides it is futile and engages her legs and stands. I finish adjusting her clothing. I pull down her shirt, pull up her bottoms, and snap and zip them.

We walk to her waiting wheelchair. She has a death grip on my arms. Her anxiety is palpable, as her warm, clammy hands dig into my arms. She releases one hand to bring her necklace to her mouth and bites down on it. Startling loud sounds continue to emerge from her tiny frame. We finally get to her chair, and I hoist her in and get her situated.

Suddenly, the energy in the room changes. Calmly, Emily grabs her scarf off the coffee table, crosses her legs, turns toward The Wiggles playing on the television, and completely relaxes. Completely unphased by the last twenty-minute ordeal that has me needing another moment to recover and pause. Sitting next to her, I look down at my Apple watch. It appears “Operation Get Emily Dressed” has already scored me with five activity minutes. I smile and am proud of my crocodile-wrangling skills. Wrestling crocodiles all day is no walk in the park.

Now, I am off to grab the socks, leg braces, and shoes from her room. Round two, or maybe three, is about to go down. My heart is full of gratitude that I only manage one crocodile.

Comfort in a Silent Sunset

As I was driving to pick up Emily, I glanced in my rear-view mirror. The late afternoon sky was putting on quite the show. The swirl of colors and subtle changes from yellow, orange, and purple delighted my senses. Southern California sunsets in January are always spectacular. The memory of that day comes back. We were sitting out on the jetty and sharing a beer as the sunset. Only sixteen, with our lives ahead of us, and yet, we had already experienced so much love and loss. God sure painted a lovely picture over the ocean. The sun sank into the water slowly and spread golden rays of light that reflected off the water. The sea was calm mimicking a glassy lake. As the colors were enveloped by the sea, you and I sat in silence. There was nothing to be said. No words that would fix this. Nothing would bring him back.

I don’t know why I was driven to see him that day after school. Maybe I was trying to be mature, strong, and tough. The truth is, I was petrified. You offered to come in with me, and I was grateful. But you were relieved when I said I needed to go in alone. It was something that I had to face alone. There is so much compassion I hold for the little girl I was. She was pretending to be okay and able to handle this BIG thing alone. The independent spirit she inherited from the man she had just lost.

The reality is I wasn’t prepared to walk into that place and see his lifeless body. It broke me open. Everything that made him my Dad was gone. I didn’t recognize the person lying in the coffin. It was a one-dimensional vessel that was void of the joy, sparkle, and twinkle of the eye that was my Dad. The light was gone, and I lost it. I remember crying uncontrollably and practically running out of the mortuary. As I rushed to exit the building, I was followed by the echo of my heels as they clicked on the marble floors.

I ran to the van. You could see I was distraught, and you jumped out and grabbed me. I sobbed into your shirt and screamed over and over, “That wasn’t my Dad. He is gone. He is gone.” That is how we ended up at the jetty watching the sunset. It was your way of comforting me when words were not enough.

That was 38 years ago. It feels like forever ago and like yesterday. We shared many sunsets on that pier, and shared many beers. We sat, mostly in silence, and let the water and the sun do the talking. I am grateful to have the memories of those special times. Time has dulled the pain of the loss of my Dad, but the pain of your loss is still fresh.

Lately, as I watch the sun begin to unwind and take a rest, I think of you. I try to recall how many times we watched the sunset and how easy it was. Our friendship required no words. We sat admiring the beauty beyond us and shared a drink in silence. Sometimes, as the sun begins to descend, I Drink a Beer, and allow the memories to fill the quiet.

Letting Go With Clarity (and Data)

Photo by ThisIsEngineering on Pexels.com

What a difference a day makes. How about a year? Last year, I was grappling with fear and anxiety as the new year unfolded. Worries of aging and maintaining my ability to care for Emily swirled in my mind on a loop. Days fueled by fear and worry perpetuated my anxiety. Fortunately, I am ending the year feeling good about the support we have to assist in Emily’s care. That will change. (Change is the only thing that is certain.) For now, I am grateful and thankful.

I spent the last week looking backward. Diving deep into the data I had collected through my plans and journals, I began to assess the year. It was eye-opening. My self-assessment without the data was dismal. I did nothing in 2023. Moved backward, not forwards. I made zero progress on my goals. Boy, am I grateful that I have data to disprove my negative thinking. My recollection was deficient and only painted a partial picture. While creating a highlight reel for each month, a different portrait emerged.

There were concerts and shows. I enjoyed another year of leading a connection circle group for We Are Brave Together. I traveled, connected, and expanded my knowledge by reading. In fact, I smashed my reading goal of 100 books. I read 177. I traveled to imaginary places. Read essays that altered my perspective. There were books that kept me awake at night. (Both fiction and non-fiction.) After almost a year, Emily finally got a new wheelchair. We found a new dentist for Emily and were able to address lingering dental issues. Many things to celebrate and rejoice in, and my mind just glossed over them.

Much was lost following the pandemic. All of our support services disappeared for the first 18 months. As they began to reappear, they were mere skeletons of their prior selves. This past year seems to be a transition to more opportunities and services opening up. In September, Emily’s adult day program was expanded to cover more hours. I also have a caregiver who is helping with baths and driving Emily home a few times a week. As some of the gaps begin to fill in, I can see why I have been feeling overwhelmed and on the verge of burnout. It also highlighted the holes that remain.

While I have made some progress in the past year, the gains are small. My body needs more. Focusing on my mental, physical, emotional, and spiritual fitness has to be a priority this year. In order to say yes to my fitness, I will have to say no to other commitments. I have been stretched too thin lately at the expense of my health and wellness. The process of reflecting and analyzing the data helped shine a light on the areas I have been neglecting. There has been A Little Too Much on my plate. Time to create blank space.

Fasten Your Seatbelt, Turbulence Ahead

We got on the road a little later than expected. Preparing everything around the house for the caregiver who would be with Emily for the weekend took time. She had never stayed over with Emily, and then there were the dogs. We had a scheduled grooming for Coco at 9 am and didn’t want to cancel that. My sister patiently waited and watched Home Free* on YouTube while I ran around the house like a mad woman. It was almost 11 am when we finally hit the freeway for Las Vegas. I could sense that Todd’s anxiety was high, and his patience was low. My gut was warning me that this ride was going to include some Turbulence. I was not wrong. By the time we finally arrived at the hotel (7 hours after we left home), Todd was ready to take a flight home. He was done, and we hadn’t even started the trip. He left to take a walk, and I cried.

I was so upset. My sister was there for the entire ride. She witnessed the traffic. The closed freeway. The wrong turn I made when we stopped for lunch increased the time it took to get there. Carol had a front-row seat to the ugly side of marriage. In all relationships that matter, there are Highs and Lows. (This might be my marriage theme song.) The 7+ hour drive to Las Vegas from our home was definitely a low. Todd and I left our emotional sobriety in Long Beach, or at least it was delayed by a few hours.

As my sister consoled me, we made plans to regroup and go sightseeing. She is older than me, and this was her first trip to Las Vegas. Despite being trapped in the car for hours, we jumped back in the car. We were off to see The Strip at night. I calculated the route to see the new Sphere. Las Vegas at night is magical, and sharing it with someone for the first time cannot be underestimated. My joy cup was filling back up. A couple of hours later, we returned to the hotel. Todd was back. The walk and fresh air had lessened his anxiety, and sharing the beauty of Vegas left me calmer as well. I was clear in our conversation that I refused to spend our precious time away from caregiving arguing. I didn’t want to waste a moment of our respite. We committed at that moment to turn the trip around and make the most of it, and we did.

We visited The Conservatory at the Bellagio. My sister gambled for the first time. She won money…and cashed out. Todd and I received the best service at Heritage Steakhouse inside The Mirage Hotel. We have dined there before, and this trip was incredible. We enjoyed a steak and potato dinner, and I sipped on a delightful Merlot from Robert Keenan Winery. Everyone we encountered at the restaurant was engaging, knowledgeable, and friendly. We decided to walk from The Mirage to the Bakk Theater at Planet Hollywood, where we saw Miranda Lambert. Our seats were incredible, and no one got yelled at for taking selfies. The next day, we met my friend Cheryl for brunch at Red Rock Casino. After an enjoyable meal, my sister won more money…and cashed out. Our trip ended with a drive through Red Rock Canyon. The stunning views and majestic sunset were a beautifully calm end to the rocky start of our little getaway.

I never want to take my relationships for granted. My friendships, my family, and my spouse mean everything to me. Life has taught me that in important relationships, there will be conflicts. When the thoughts or opinions of another matter, there will be disagreements. I will leave you with a quote from my favorite fictional guru, Ted Lasso, “Even Woody and Buzz got under each other’s plastic.” Well said, Ted. Well said.

*This Home Free song Stargazer Lilies also reminds me of my husband in the highs. He washes the car and fills it with gas. He checks the oil and changes it too.

A Holiday Playlist that Works for Your Family

Once upon a time there was a caregiver that exerted Herculean effort to fit her family into the typical holiday jukebox. After putting her children to bed, she stayed up late checking off names from a 3-page list of Christmas card recipients. She baked cookies to deliver to local family and friends. This caregiver would carry her six-year-old daughter around on her hip traveling from store after store in search of the perfect gifts for family and friends. Once the cards were done, she could dedicate her evenings to wrapping gifts and finding creative ways to recognize a host of teachers, therapists, and aides on a one-income budget. She attended a plethora of events during the month of December, most of which she spent outside trying to console her overstimulated and agitated daughter. This cycle of trying to keep up with the expectations of what she thought must be done left the caregiver stressed, overwhelmed, and if she was being honest, depressed. How did she cope with all the stress of trying to live up to her perceived expectations? She spent too much money, overindulged in holiday treats, and consumed wine each night as she worked alone to check off all the boxes.

She continued to repeat this cycle for years. There was no time to rest, recharge, and reflect. One day she decided to stop listening to a playlist that didn’t work with her unique family. She decided to create her own kind of music. This changed everything and suddenly the joy of the holiday season was not just for everyone else, but for her and her family too.

Muting the old playlist required adding the word N-O. She would have to apply it liberally and often and it would be uncomfortable at first.

No to going to places that overwhelm or agitate her daughter and create anxiety and stress for the rest of us.
No to overspending on gifts and then spending the next year paying off the bills.
No to competing with family to buy the “best gifts” when her bank account could not support the expense.
No to over drinking to avoid family tension or conflict.
No to eating foods that made her feel terrible to please others.
No to apologizing for her daughter’s behaviors. She cannot control them, and her daughter is just being herself.
No to putting up a Christmas tree and all the work that goes with that. (Which is usually by herself. It wasn’t important to the rest of her family.)
No to buying gifts out of perceived obligation.

To bring back the J-O-Y of the holiday season, she took a hard look at what makes the season special to her and her family. She wanted only to say Y-E-S to things that would add to her family’s holiday experience? What songs had to be on the list?

Yes to buying a gift for friends and family when it is NOT a holiday. (Love Gifts)
Yes to staying home if that seemed like the best choice for her 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 during the holidays.
Yes to donating to organizations that impact her family and friends.
Yes to decorating outside and adding lights to the house because that fills her cup.
Yes to joy and great music.
Yes to making her Great-Grandpa Nick’s cookies for the family.
Yes to feeling good in January when the bills come and she can pay them. No debt. No interest.

Everyone’s playlist will look different but here are some tips that can set you up for a successful holiday season:

Set boundaries: Decide what events or family gatherings you will attend. Set a limit on your commitments and try to pick ones you know your special loved one will handle with the least distress.
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.
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.
Say NO: We covered this already but it is a big one. Say no often. Throw it around like confetti (or a Megan Trainor song).
Think of ways to create memories and create the feeling you want during the holidays.
Ask your family what matters the most to them during the holidays. If they could only pick one thing to have or do, what would that be? For me, it is the lights on the house. This year Todd and Justin want to make a nice dinner for Todd’s parents, Emily enjoys the sweets that accompany gatherings. Every year I ask my family this question, because the answer changes year-to-year.
Don’t overspend. It isn’t necessary to buy bobbleheads and tchotchkes for everyone we see during the holidays. When I discover the perfect gift for someone, I will get it for them. Last week, my girlfriend brought me a tin of my favorite tea and a pair of earrings that she said screamed my name. I love them, appreciate my friend’s thoughtfulness, and I did not have a gift for her. I accepted them graciously. Gift-giving is not transactional.
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.
Let go of your expectations. The Norman Rockwell images of others’ on your social media feed is a lie. There is no such thing as a perfect holiday. Some of my most treasured holiday memories involve something that went awry. It’s the unexpected hiccups that make it memorable.

Plan your holiday to reduce the volume of stress and increase the volume of enjoyment. Focus on the people, the memories, and Make Your Own Kind of Music.

If We Make It Through December
Written by: Merle Haggard/Performed by: Cody Johnson

Caregiver Truth Discovered On a Boat One Day

Caring for my daughter is the hardest thing I have ever done. Her care is ever-present. Emily does not possess the ability to assist in her care. Every day, I prepare her meals, feed her, dress her, give her medication, and handle her personal hygiene. The moment the last item is checked off the list, it is time to rinse and repeat. In addition to the hands-on physical care, there are calls to make, prescriptions to fill, insurance claims to fight, and a never-ending battle for services, equipment, or accessibility. I recognize this work is exhausting, and I need breaks from it. My rare mom’s radar constantly searches for additional caregivers to add to my contacts to assist and aid in Emily’s care. Finding others who are well-suited to work with Emily and willing and able is time-consuming too (but essential).

After nearly a decade of riding the caregiving train with little more than weekend respite, I was in desperate need of an extended break. The month of September is brimming with reasons to celebrate in our family. This year, I was turning 55, and Todd and I would celebrate 31 years of marriage. Birthdays come each year effortlessly, but maintaining a marriage is something that requires much effort. These moments, especially anniversaries, deserve to be celebrated and acknowledged. In a perfect world, we would celebrate them together, but Todd and I are not your typical middle-aged couple whose kids have all flown the nest to take on college and careers. Emily is never flying from the nest. The reality is Todd and I rarely get to travel together. Our dreams of traveling to Australia or Europe when our kids grew up have been sidelined by caring for our daughter. It is a choice we make together, and we understand the parameters of our circumstances.

As my birthday got closer, I began daydreaming about taking a cruise. A cruise is something I have never had the opportunity to do. I also wanted to experience fall on the East Coast. My dear friend found a great rate on a cruise that explored New York, Boston, Main, and Canada. The cruise had a 9-day itinerary, and I couldn’t imagine making it work, but my desire to go was gnawing at me. Todd and I had a long discussion, and we figured out how to make it happen. There were some snafus with weather and ports. Both Boston and Maine were axed from the itinerary. This was beyond our control. My friend and I rolled with it. We spent 2 days exploring New York City. When the Norwegian Joy finally docked in New York, we set sail at our designated time.

Corry and I had a blast. We ended up being at sea on my 31st wedding anniversary. I celebrated the occasion at the steakhouse on the Norwegian Joy with Corry. We enjoyed steak, wine, and a musical on the ship, while Todd was at home holding down the fort. We joked that we should have brought a life-size cutout of Todd so he could have been included. The night was bittersweet, but I was grateful and joyful to have this incredible experience. I was grateful that Corry handled every detail. All I was required to do was pack and show up. As a caregiver, it is a wonderful gift when others make decisions for you. When they decide where we should go and what we should do, they plan it. What a fantastic gift to give a caregiver.

Somewhere between Peggy’s Cove and Quebec City, I started to feel unwell. I was down for the count on 9/11 and spent that evening in the cabin alone. It was the end of the trip, and I remember lying in bed and crying. At first, I thought my tears were because I was letting my friend down by bowing out on the evening activities. We are great traveling partners. We both want to squeeze every bit of goodness out of the experience. We hit the ground running when the sun comes up, and we ain’t going down until the piano man plays his last song. This evening, I couldn’t muster the energy in me to rally.

As I listened to my thoughts between sniffles, they became clear. I wasn’t crying about disappointing Corry. I was sad the trip was almost over and I would soon be going home. I kept thinking I would rather be sick on a boat than at home healthy. The realization that my vacation was not long enough knocked the wind out of me. I knew I wanted to share this experience with other caregivers, but I was ashamed of these thoughts. I felt guilty for not wanting to go back to my life. As hard as it is to admit, this was my truth at that moment, and I needed to claim it.

My vacation revelation reminded me, or maybe reinforced, that no matter how long I get a respite or reprieve from my caregiving duties, I will never be ready to return with joyful glee and open arms. Caregiving is something I do because Emily depends on me. Caregiving is not my passion, but Emily relies on others to care for her. For better or for worse, right now, I am that person.

Here is a fun song to capture my I Was On a Boat That Day feeling. ENJOY!