How to Combat the Unseemly Pride of Caregiving

Yesterday I had the privilege of being a guest on the radio show/podcast Hope for the Caregiver. In my conversation with host Peter Rosenberger, I recalled a scenario from our early years of marriage. I was scheduled to sing special music at our church’s evening service. I don’t remember what happened, but earlier in the week I injured my foot or ankle and was using a cane for support.

Thinking ahead, I wondered if I could switch weeks with someone else who did special music. I just didn’t want to walk up the steps to the stage using a cane. Without thinking it through, I shared this thought with my husband, the man who lives every day of his life with a visible disability. His response?

“Why is it ok for me to be in front or in public in my wheelchair, but not ok for you to be seen with your foot wrapped and walking with support?”

I don’t know if you have ever been asked a question like that. If you have, please tell me how you answered. Because I couldn’t come up with anything.

That was one of the first times I became aware of “caregiver pride.” I did not feel cheated that my husband had a disability. Subconsciously, my ego was fed by being the caregiver, the one who helped my husband overcome and shine. I enjoyed hearing comments from others about “how lucky” Jerry was to have me in his life.  But now you want me to show the world (or at least the 200 people who attended) that I too have a weakness or vulnerability?

Even as I write and re-read those sentences, I cringe at the ugliness of sin behind them. I wish I could say that is the only time I understood my brokenness as revealed in caregiving, but it is not. Now twenty-five years in, I am quicker to catch that thought when it tries to rear its ugly head, but not always.

There are two strategies I’ve used to help me combat caregiver pride:

1) Honesty—with God, my husband, myself and one or two close friends. I need a safe place to come clean with how I am doing as a caregiver. I need to allow God to take the ugliness and replace it with His grace. When my husband uses the gifts, talents, and abilities endowed in him by our Creator God, I rejoice and remember it is God who equipped him, not me. I need to to share openly with a friend the struggle and invite them to pray for me.

2) Accountability—before God, my husband, myself and a friend. This sounds much like #1, but it goes a step further. Here I ask for help (the antithesis of caregiver pride) to keep the sin in check. I allow others to point out pride when they see it creeping back into my life. I let others love me even as they help me recalibrate my focus and attitude.

What about you? Have you found your role as a caregiver revealing something about yourself? I am not asking you to air your dirty laundry here, but is there a story or example you can share? We caregivers need one another and we need to know we are not alone.

ground group growth hands
Photo by Pixabay on Pexels.com

Valentine’s Day, Romance and the Song of Solomon

On the heels of Valentine’s Day, may I ask, how was the romance?

We went to dinner at a restaurant new to us, but not fancy schmancy. We had great food and good conversation. Apparently, we made a good choice to eat early, as the line was out the door with people wanting to get in as we left. After dinner, we walked across the parking lot for a leisurely stroll through Hobby Lobby. Jerry mentioned he hoped I wasn’t disappointed that this was not romantic enough.

I told him to stop right there. Romance, in my humble opinion, is very individualized to the couple. If we had reservations for dinner and dancing, I would feel uncomfortable as I am not a dancer. If we went to a 5-star restaurant where the waiter puts the napkin on my lap, I’d be nervous and giggling all evening. What we did was perfect for us, our budget, and the pace of life. And best of all, he took the time and initiative to make the plan. Now that’s romantic!

15726321_10211085608476976_7999075850110647644_nTo me, romance means we spend time together that is meaningful to us as a couple. It may revolve around a holiday, or it may be around a table playing a game. It might be taking a walk around the neighborhood in the evening as we hold hands and enjoy the sunset. Sometimes it is a quiet evening of reading.

Speaking of reading, I’d like to suggest a book, Lovestruck: Discovering God’s Design for Romance, Marriage, and Sexual Intimacy from the Song of Solomon by Sharon Jaynes. (I do not receive any compensation for this recommendation).

I learned about the book from an author interview on the radio. Part of the appeal for me was this is one of the first, if not the first book written on the Song of Songs by a woman. I told Jerry about it and we have been reading it the last couple of weeks. Our first read-through was each on our own. Now, we want to reread it together.

The author writes with an engaging sitting across the table from you, voice that draws one in. She treats this unique book in God’s Word with great respect and research and helps us understand what the strange language of that culture means. Sharon Jaynes also shares a bounty of tips to help you improve and grow in your marriage, both in day-to-day interactions and in times of intimacy. Jerry and I are each finding ways to improve our communication, romance, and marriage. We are sure you will too. If you’ve read the book, or get it to read now I’d love to hear your thoughts.

What does romance look like in your relationship (G rated comments only please)?

Tired? Worn? Who Cares for You?

I’m tired, I’m worn. These words by Tenth Avenue North in their song, “I’m Worn” could be the mantra of every caregiver.  The song continues, “a heart that is heavy; worn from the work it takes to keep on breathing, your soul feels crushed by the weight of this world.”

Do you wonder if the struggle of therapy appointments, equipment that needs repair, insurance pre-authorizations, specialists being far away, personal care attendants not showing up, or IEPs will ever end?

Not all of us feel this way, or at least not all the time. When these feelings strike me, I try to remind myself that there is a day when the struggle will end.  When our hearts that are frail and torn can be reborn.  Until that day I need to remember I am not alone in caring for my husband. God cares more for each of us than we could ever care for one another.

Let’s look at a few ways that God is our caregiver:

  • He gives us rest – Mt 11:28-30 28 Then Jesus said, “Come to me, all of you who are weary and carry heavy burdens, and I will give you rest. 29 Take my yoke upon you. Let me teach you, because I am humble and gentle at heart, and you will find rest for your souls. 30 For my yoke is easy to bear, and the burden I give you is light.”

Jesus invites me to 1) Come to him  2) Work in unison with him (that’s the yoke part) and  3) Learn from him.

  • He sent the Holy Spirit to be our comforter and counselor – to live within us and empower us. John 14:16
  • Jesus is our advocate- those of us in the disability world understand advocacy. The Bible says Jesus is our advocate when we sin– how’s that for getting the best?  I John 2:1 
  • Alpha Omega – He is our bookends, He was there in the beginning and created us. He’ll be with us in the end. And He sustains us through every breath in between. He NEVER leaves us alone. Rev 22:13
  • He’s preparing a place for us – that’s pretty cool. Have you ever felt like you just don’t belong here? To some degree we all have. That’s because this world is not our home. Here on earth, we may only get glimpses of the rest that we will enter into in Heaven. John 14:1-4 

Can you imagine a better Caregiver for you or your spouse? Won’t you join me in taking His counsel from Matthew 11:29 and let Him teach us how to walk in the rhythm of rest.

beach-bench-boardwalk-bridge-276259 (1)

Marriage Advice to Share and Grow By

Starry-eyed couples in love often think their marriage will be unlike any before or since. Soon we learn similar patterns occur and we need the counsel of others. Read some of of the advice we received here, and share your own.

Read More...

Self Care When You Just Don’t Care

Anyone who has a child or spouse with a disability has experienced days/weeks/months which are hard. Many times there is no option but to gut through it.

Other times, by forfeiting the most basic of self-care – sleep, eat, breathe I may make some unwise or unhealthy decisions. The biblical story of Esau and Jacob found in Genesis 25:29-34 brought this point home to me.

29 Once when Jacob was cooking some stew, Esau came in from the open country, famished. 30 He said to Jacob, “Quick, let me have some of that red stew! I’m famished!” (That is why he was also called Edom.)

31 Jacob replied, “First sell me your birthright.”

32 “Look, I am about to die,” Esau said. “What good is the birthright to me?”

33 But Jacob said, “Swear to me first.” So he swore an oath to him, selling his birthright to Jacob.

34 Then Jacob gave Esau some bread and some lentil stew. He ate and drank, and then got up and left.

So Esau despised his birthright.

Esau spent the day hunting. He returned home and was famished. I’ve been there, have you? I spend the day running errands, managing appointments, taking care of the house and everyone else except me And I become hangry. Watch out!

By allowing himself to get past the point of hunger, Esau made a rash decision. He traded

thiebaud-faix-KXTAn5FzDac-unsplash
Photo by Thiébaud Faix on Unsplash

his birthright (his role as the eldest brother and future inheritance) for a bowl of stew. At the time it seemed reasonable to him. He was convinced he would die without food. In hindsight, that decision adversely affected the rest of his life. It could not be undone. The effects of his decision overflowed to others in his family and community.

This story is a good caution for me. When I lack margin, am hungry, overtired, or cranky it is a clue I may have neglected self-care.  It’s time to backtrack and take care of me and avoid making decisions. Life and those around me may look different after a satisfied tummy, rested body, or a walk around the block.

 

 

 

 

It’s Just a Little Toggle Switch, Big Red!

Accessible vehicles are such a blessing most of the time – until they are not! Then they become a huge stationary driveway ornament. That’s what happened at our house this week.

When we bought this van and had it modified for Jerry’s needs, the emergency brake was connected to a toggle switch on the driver’s door. Nice and handy for him to access easily. We never needed or thought about a backup plan?

Until this week.

Jerry got in the van and closed the lift. He locked in and was ready to roll. The last task before putting the vehicle in gear is to release the emergency brake. The brake is always on when the van is parked as it is necessary to operate the side doors and lift.

My cell phone rang, and Jerry asked me to come to the driveway and give him a hand. IMG_0503Neither of us could get the toggle switch to respond. We’ve had the frustration of being stuck outside the van when the lift doesn’t work. It would be even more problematic if we somehow got the brake off so he could drive, but then not be able to get it back on so he could exit the van.

After he exited and closed the lift, I tried to find a manual brake release. I came up empty. We called our mechanic, who thankfully makes house calls. We scheduled time the next day for him to check it out.

Sadly, it became clear that the issue would have to be addressed by the conversion company mechanic. After four calls we got the van scheduled for service. It will be towed to the shop one week after the brake switch died.

It seems crazy that the van works fine mechanically and the engine runs well, but it is not drivable. But without the release of the emergency brake, it’s not going anywhere. And neither is Jerry.

I’ve been asking God what lessons He has for me from this experience. I’ve come up with two.

The first is this. Life can look good on the outside. My husband and I can “clean up well” and function at church, in the community, at work, etc. and everything looks and sounds dandy. But something as seemingly small as a toggle switch can bring everything to a dead stop. I want to be more aware of the toggle switches in our relationship and deal with the small issues as they arise.

My second lesson is to ensure redundancy in any future vehicles we buy. All the other systems in the van have a backup, except for the emergency brake. That’s a problem, as we just learned. Sometimes in relationships, I’ve heard it said that if two people can do the same thing one is not needed. That’s just not true. I will celebrate those areas in which Jerry and I are similarly and equally skilled. We may do things differently, but still as effectively. It doesn’t get much better than having your spouse step in and save the day when one of your own toggle switches gets stuck.

Marriage Blanket of Grace

“Their marriage was a blanket of grace that had been so many years in the making.” Home for Christmas by Melanie Wilber.

I love that imagery. There’s something so cozy about curling up under a heavy blanket that provides warmth for the body and the soul.

I read the quote to Jerry and asked if it provoked any thoughts. He responded that grace develops over time. The longer we are married, the more grace abounds.

So true. It’s not the time alone that increases grace in our lives. It’s the way we handle the little moments that seem insignificant, the everyday occurrences, and the monumental memories or stories that grow bigger each time they are recounted.

I envision our marriage blanket of grace as a quilt top secured to a fuzzy soft velour backing. I wrap myself in the snuggly side and ponder the memories and meaning of each quilt piece.

I see a piece of the blouse I was wearing on our first face-to-face date.

There’s a fragment of his sweatshirt I wore camping one weekend. Oh, how silly I was waking him up in the middle of the night to ask if I could take it.

Satin and lace from the ring pillow made by a friend and carried by another friend at our wedding.

Fabric from the shirts I made for Jerry in our first year of marriage. And to think our friend who was years ahead of us in marriage told Jerry to enjoy them now because I’d never make another. Four years ago I made him two more, just to prove our friend wrong!

Tears fill my eyes as I see the pictures printed on muslin scattered throughout the quilt. Our first home together. Posing at the accordion statue downtown before we moved away. Minor to major league baseball games. Visits with family, cruises and beach vacations. Not only is each picture worth a thousand words, but every photo also coveys a bushel of grace.

Other pieces of the quilt came from event t-shirts we served in together.

Oh yes, that scrap is from a favorite dress that fell off the bed and got caught in wheelchair tires. I remember laying on the floor cutting it apart to free his wheels to turn.

Snippets of hospital gowns one of us donned remind me to be thankful for good health now.

A section of a guest bed sheet helps me recall the hundreds of people we have hosted in our homes.

A strip from one of Jerry’s wheelchair bags brings to mind that life is made up of day by day activities.

That corner of a kitchen towel is reminiscent of all the messes and memories we’ve made sharing meals.

There are many more pieces to remember, but not today. Instead, my focus turns to the stitching holding it all together.

Copious amounts of love, prayer and grace are in those threads to be sure. But the thin strand is strengthened by forgiveness, patience, acceptance, honesty, integrity, mercy, tears of joy and pain, growth, battling through loss, laughter, and celebrations. I wonder what we will add in this new year?

What are some pieces that comprise your marriage blanket of grace? I’d love to know.

IMG_0489
Grandmom Borton made a quilt for each grandchild. This was the one given to Jerry when we got married.