Gimme A Break!

           Arranging a long weekend away for me every few months is one of the many ways Jerry expresses his care for me. A group of guys from church volunteer to help with his evening and morning routines. I am free to travel, hole up and sleep, write, or any other combination of things that bring me pleasure and a change of pace.

            But we’re living in a pandemic. Is it possible to still find rest or refreshment when the world is in crisis? Not only can I, but I must. We’re still sorting out how to make these respites work in our new normal, but here is one idea we’ve tried.

       My weekend getaway was fast approaching. Once I got Jerry up on Thursday morning, I would not need to be home again until Monday night. I made plans to hibernate in the home of friends who were out of town. Their house sits on a lake and has a huge screened-in porch. I envisioned my every waking moment on the lovely porch and considered sleeping there in the recliner rather than the guest room.

            Then came Monday.

            The Monday before the Thursday I would go away, Jerry woke up with an infection. It wasn’t horrible, but it required a deeper level of care than his friends from church knew how to manage. Infections in people with disability can escalate quickly. This knowledge, combined with the uncertainty of growing COVID numbers, especially here in Florida, left me with an uneasy feeling about going away.

            I suggested to Jerry we might want to consider changing our plans. After chatting, we could not come to an agreement. We decided to sleep on it. The next morning Jerry awoke telling me we needed to cancel my travel plans and his volunteer attendants. There were just too many risk factors we could not mitigate. I assured him that unlike some periods in life; I was not at a point of being stressed with his care, or in need of a break. Changing plans for this weekend would not have adverse effects.

            He knows me well. Expecting this response, Jerry said he wanted me to maintain as much of my original plan as I could. He made a strategy for mealtimes, and his waking hours. He even dubbed the five days, The Weekend of Joan. Conveniently, it fell on the opening weekend of Major League Baseball. He offered to stay in his office or our bedroom to watch games, giving me the full run of the living areas in the house.

            Most mornings, since Jerry was still working, he began responding to messages and reading work projects while still in bed, allowing me to sleep in. We had not discussed this, and it was a pleasant surprise when I woke up later than usual the first morning.

            Thursday, I took a brief road trip. Just me. It was exactly what I needed. A safe change of scenery and time to let the idea percolate that the next few days were for me. It was fun to think of the many things I could do . . .writing, reading, coloring, knitting, baking, swimming, and napping in my hammock. As fun as the planning was, moving from one activity to another without cleaning the house, grocery shopping, or tending laundry was even better!

            Each night Jerry asked how the day went for me and reminded me each morning that there was still time to celebrate The Weekend of Joan. And I did.

            If you think I have an amazing husband, you would be right. Though later, one of his good friends said to him, “Sure, you’re all proud of making a Weekend of Joan when now there are three more Months of Jerry until her next one!”

            It it is hard to be a caregiver. It is hard to be in a pandemic. It is hard to not know what will change tomorrow. But that doesn’t mean life has to stop. It doesn’t mean our plans have to go on hold.

            I write this to give you hope.

            If you are someone on the receiving end of care, what can you do to celebrate, appreciate, and/or give a slight change of pace, or perhaps even a lengthier time off, to the one who assists you?

            If you care for someone who cannot help you plan a break, think in small increments. Are there 15 minutes in the day, or start with five minutes, to sit outside, read a page or two of a magazine or book, or slowly sip your coffee? I serve Jerry better when I take care of myself, in big and small ways. I imagine it is the same for you.

            For those of you who are friends or extended family members of people who need care, I write this for you too. Maybe you’re not ready to take on a big step like a morning or evening care routine, as Jerry’s friends were. Please understand this is not the only way to give a break to a caregiver. Take a walk together and push the wheelchair. Stop by with an already prepared glass of iced tea to share. Drop off an unexpected meal or gift card. Sit in the driveway, socially distanced, with the person needing care and listen to the story they repeatedly share, allowing the caregiver some time alone to take a bath, or rest their eyes for a few minutes.

            Most of us need variety and breaks in our routine. Sometimes it won’t look like a weekend at a hotel, or a retreat at the lake. A weekend away isn’t always in the budget, or the calendar. As our needs change with aging, overnights away are less likely.  

            Getting a break isn’t as much about where I go, or what I don’t have to do. I think it is about engaging fully in the moments, hours, or days I have, whether caring for Jerry, working, cleaning, napping, or reading. Perhaps this is one lesson I am to learn in my 2021 year of “FOCUS.”  

            What is your favorite way to catch a break? I look forward to gleaning new ideas as I read your comments, right after I get back from a walk with my neighbor!

Oh.My.Word!

I never saw myself as a word-of-the-year person. I never considered the idea. . .

            . . .Until three years ago, after moving to a new state. There was nothing mystical or ethereal, I just sensed that courage would be my word for 2019. It was a good one. Besides moving 1000 miles away, my husband and I left one ministry and founded a new one. It took courage to get through the 501(c)3 application, communicate the change effectively with donors, and work through the emotional and relational challenges of changing missions. I called upon courage more than once in the year.

            Courage worked well, so I sought a word for 2020. I vacillated between grit and fortitude, ultimately settling on grit. I liked the pithiness of the word, and the sense it gave me of hard work ahead. When I embraced grit, I thought it meant I was to do whatever it took to get the manuscript of my book, The Third Wheel, completed. I canceled most of my normal activities, so writing received all my time and attention outside of work, ministry, and marriage.

            Little did I know I was a bit ahead of the curve in canceling activities. Most everyone else joined me in clearing calendars, either by choice or by force, when the pandemic hit. On the surface, this seemed like a dream come true for a writer. Canceled activities reduced my guilt about staying home to write. Suddenly, time was all I had. But time, on its own, does not produce grit.

            The uniqueness of the pandemic reminded me of winter storms. Before moving, I lived in an area prone to Nor’easters, massive storms along the east coast that usually include torrential rains or heavy snow. When one was in the forecast, I listened repeatedly to all the prognosticators. I stocked up on supplies and planned to stay put for several days. Then when the first flurries fluttered, I stopped. It was as if I’d never seen snow before. My husband and I parked ourselves in front of our bay window and watched with awe the gazillion little snowflakes piling up on our sidewalks, ramps, and driveways. We turned on lights at night and left the blinds open to see the glittering droplets. We knew what would happen. We’d seen it before, but we just couldn’t turn away from watching. The snow drew us in to its mesmerizing drifts and banks.

            The pandemic caused the same effect for me. I checked in with friends, watched the news, and sat stunned. Unlike a Nor’easter, witnessing a world-wide impact was something I’d never seen before.

            The result: I found it difficult to write. One would think it’s the perfect time for grit. And it was. But I couldn’t muster any.

            When it became apparent that this two-week period of self-isolation would not remedy the pandemic, we hunkered down. And grit became necessary, not to write, but to survive sanely. I can do this for one more day. And one more. And then another.

            As I was getting the hang of this isolated way to live, COVID-19 snuck into our home. Though we were many months into the pandemic, it was the farthest diagnosis from our minds when my husband made a trip to an urgent care center.

            He rolled his wheelchair back to the van and told me he was to isolate for ten days and I needed to quarantine for fourteen days. How do we do that? How do I still provide him the care he needs with his disability while staying clear of the virus? That first week was rocky. I wasn’t fearful but discombobulated. I slept in the living room and used only the guest bathroom. I moved half of my closet out of our room. He had our bedroom and master bath. Boxes of gloves, masks, and face shields sat on a table outside the bedroom door. When I took food or drink to him, or assisted him, I suited up.

            Several days in, I was ready to quit. I hated not being able to be near my husband to comfort him. But what would quitting mean? Give in to the virus? Not an option. Send him to a hospital? Absolutely not! Say I wasn’t going to help him anymore? Of course not. What it really meant was it was time to dig deep into grit! Not that it all depended on me. It did not. I knew our every breath depended on God alone. And if He gave me more breaths and heartbeats, I’d respond with gritty fortitude to do it one more time . . .

            My matching diagnosis a week later only deepened the grit of my faith. Jerry still needed care, and I needed rest. At least now we could rest and recover in the same room.

            Just before Jerry’s diagnosis, we celebrated his birthday. We celebrated my birthday during recovery. I continually said, as long as we could be in the same room for our 25th wedding anniversary on November 11, I would be fine. I should have been a little more specific about my desire.

            We were in the same room on that day, but rather than celebrating, I was again nursing Jerry. Not for COVID-19 this time, but for two ankles he injured the day before when he missed a ramp off a sidewalk. Not realizing the extent of the injury, he stayed home for a week before agreeing to go to the Emergency Room. The medical team, after x-raying and finding he fractured both ankles, advocated for inpatient admission. Hospitals can be a dangerous place for people with disabilities, but amid a pandemic the challenges multiplied, giving me the ultimate test of grit.

            Looking back on the year 2020, I see why God impressed upon me grit. I, probably like you, needed grit to make it through last year. Thank you, God, for preparing my heart and mind.

            I wonder what lies ahead in 2021 since He has given me the word focus. May it include my writing? I prayerfully believe it will. For what else will I need focus? I don’t know, but by keeping my focus first on God and following His plan, it’s a good place to start.

Is It Worth the Struggle?

Slogging through Jell-o. That’s what riding my bike felt like earlier this week. I noticed my speed was reduced. I had to use a lower gear. I couldn’t ride as far. It was hard work.

I had missed a few days of riding. Did it really make that much difference?

It was breezy out. Was I having that much trouble riding into the wind?

I didn’t want to bike if this is going to be my new normal.

Today before riding again I thought, let me check my tires pressure. You guessed it; they were very low. I inflated both tires. Mounting my bike, I turned out of the driveway. I felt like I was flying. The gentle breeze brushing my face was a delight.dakota-corbin-fisvoU9bf-k-unsplash

Nearing the end of our street, I had to change gears because pedaling was too easy. I rode farther than I have in weeks, and my speed was faster.

Riding, I reflected on this day—the Saturday between Good Friday and Easter. It is a sobering day for me as a Christian, and I know what happens tomorrow! I wonder if the disciples felt a little like I did earlier in the week. The air had gone out of their life.

Their joy was gone. Jesus was gone. Everything was different, harder, and more troubling. Was it really worth going on if the Jesus we followed was dead?

In the first century, this was a dark and hopeless day.

But hold on . . . don’t give up now.

Joy, Hope and Grace await.

 

Cross photo by eberhard grossgasteiger on Unsplash
Bicycke photo by Dakota Corbin on Unsplash

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.

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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.

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