Looking for Bright Moments, Not Bare Branches

I stepped out of my door today and a gust of wind hit the trees and bright yellow leaves swirled around me and over me. I walked through the yard as the leaf confetti showered down on me. And I smiled as I reveled in the unique beauty of the day.

Every day is unique. But some are more beautiful than others. And some are bare branch days.

Like one day last week when I fed Mom lunch and she didn’t say a word. I talked to her. I asked her questions. I sang our songs. I told her who I was several times. She kept opening her mouth and eating, but was unresponsive to me.

Until towards the end of the meal, when she suddenly looked me right in the eyes, took a big breath, and asked, “Who are you?”

“I’m Cheryl, Mom.  I’m your daughter, Cheryl…” Mama frowned and squeezed her eyebrows together and up, in a concerned look.”Or Sherry. Sometimes you call me Sherry…. I love you, Mama. And you love me.”

Mama rolled her eyes and looked at the ceiling and shook her head back and forth a bit.

But today, as my daughter was caring for her Grandma, Mom asked, “Where’s Sherry?” And when Annie told me she’d asked for me my heart was so thrilled.

Annie also said that she told Mom that she loved her. And Mom asked, “What for?”

Annie answered, “For many, many, many, many, many, many, many reasons.”

And Mom replied, “Two more!” And we couldn’t help chuckling at her delightful greediness.

Looking out my window now, I see many trees, their branches waving in the wind on this crisp, fall day.  Some of the trees still have mostly green leaves. Some have yellow leaves. One has bright orange leaves. In the middle of it all is a tree with almost totally bare branches.

It reminds me of the other day.  I was walking home from caring for Mama, and I found a small, red Maple leaf, only about an inch and half long. It was so tiny, but so lovely. For some reason it made me happy and I picked it up and carried it home.

And it makes me think…Winter is coming. But right now there is still beauty to be noticed and cherished in this season with Mama. Someday the trees will all be bare. But now there are still moments of color swirling around in these windy days. Sweet, tiny moments of mercy to pick up and press close.

Caring for someone with Alzheimer’s is a season of learning to focus on the beauty of the bright moments that are still there and not on the branches that are bare.

It’s a time to stop and notice those tiny touches of tenderness. And someday, when the trees are totally bare, and winter chills away the last bits of color, we can take great hope in spring and an eternity with Jesus.

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Finding Courage for the Caregiving Journey

I was reading my Bible yesterday, and a phrase has stuck with me. Jeremiah 15:19, in the New King James Version, reads, “…If you take out the precious from the vile…”

I’m not looking right now at what the passage is actually saying in context and proper interpretation. I’m just saying this group of words hit me. And keeps coming back to mind.

I think because the words describe my experience with Alzheimer’s in some ways. There are vile, awful, heart-wrenching things caused by the disease. Anyone who has loved someone with  AD knows what I’m talking about here. I have lived through the shock of having my own sweet mother yell and swear at me and shout that she hates me and wants to kill me. She has hit me and bitten me. And even more tragic to my heart, she has forgotten who I am. Vile stuff to be sure.

But there are also precious, poignant things that I’ve experienced on this journey with Mama. It feels strange to say they are because of the disease — I’m sure I would have made amazing memories with Mama if she was healthy. Yet, there is some element of truth that I feel closer to Mom because of the disease.

Maybe because she has needed me so much more than she would have if she was strong. I have bathed her and spoon fed her and changed her and cuddled her. I have sung to her and read to her and brought her to the doctor and dentist. I have tried to comfort her when she’s been upset. I have cried over the changes in her and her losses. I have cheered her victories.

Maybe I feel closer because I treasure the words, touches and moments more because I know they are dwindling. Maybe human nature can’t truly appreciate something until they know they are losing it.

I read a Charles Spurgeon devotional today, Morning and Evening, and his words reminded me of this, too. “There must be shades in the picture to bring out the beauty of the lights.”

Please understand I’m not saying I’m glad my mom has Alzheimer’s. No, no, no! It grieves me that she’s sick. I’ve been living ten years now mourning Mama as we gradually lose her. I wouldn’t wish it on anyone. I’m just saying, since we appear to be stuck with the disease until God does a miracle and/or He gives the medical world a cure, that it helps me to look for the precious among the vile.

When I just think about the things Mama can’t do anymore my heart breaks. But when I say to myself, This is hard, but God will give us the grace to get through it, and I focus on the things I can be grateful for and try to savor the sweet moments, I can have courage to face the rest of this journey. One day at a time.

So I will soak in the cuddles, the smiles, the words of love occasionally spoken, the funny quirky things Mama says, and every time Mama randomly says my name. I will be thankful for each gentle touch or pat she blesses me with and for each time she opens her eyes and looks at me. I will gather the tender times to my heart and treasure them always.

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Are You Happy?

I was feeding my mom a meal the other day and I asked her, “Mama, are you happy?”

She turned her head to face me and looked me directly in the eyes and then abruptly and very loudly shouted, “NO-OOO!”

I couldn’t help laughing in the moment, at her bold, startling reaction. But now I feel like shouting the same thing. Though we’ve had some sweet blessings lately, it has been a very stressful time. And we don’t see anything changing for the better soon. In fact we mostly see dark clouds that hint at worse things to come.

And if anyone asked me right now if I was happy, and if I answered them frankly, I would want to shout with Mama, “NO-OOO!”

No, I’m not happy. This is such a hard time. I feel like life is heavy right now, and news from many directions is depressing. I know I have so much to be grateful for, but life is changing, and more sacrifices are required. And I’m so tired.

I know I have more help than so many people. And I feel guilty complaining. And I wonder where my faith is. And I ask God what He is teaching me.

I open up my Bible and read…

I pour our my complaint before Him; I declare Him my trouble. When my spirit was overwhelmed within me, then You knew my path. (Psalm 142:2-3, NKJV)

He heals the brokenhearted and binds up their wounds. He counts the number of the stars; He calls them all by name. Great is our Lord and mighty in power; His understanding is infinite. (Psalm 147:3-5, NKJV)

The Lord takes pleasure in those who fear Him, in those who hope in His mercy. (Psalm 147:11, NKJV)

And I find comfort. Because I have a Lord I can pour out my complaints and troubles to. He knows when I’m overwhelmed. He knows the paths I’m on and the ones to come, and He will be there with me. Guiding me. Guiding us.

We have a Lord that is compassionate and heals the brokenhearted. A God so mighty that He knows the name of each star He created, and the name of each wounded servant of His on earth. And He binds our wounds.

And as we look to Him with trust and hope, He is pleased that we are depending on Him. He is pleased when we hope in Him for mercy and grace for each day. He is pleased when we realize we can not get through this on our own, but have faith that He is with us and that He will preserve us and keep us and sustain us.

And someday when this hard time is over, because we know this too shall pass, we will be stronger for having lived through it. And we can declare His truth and love with greater boldness for having been held up by it in the storms.

Earlier today my daughter showed me a video she had made of Mama some time back. She asked Mom, “Are you happy?”

And with a very grouchy voice and tone, Mom had shouted, “Yes, I’m happy!”

Annie asked again, “Grandma, are you happy?”

And with a slightly less grim tone Mama shouted, “I’m happy…all the day!”

I can’t honestly say that I’m happy all the day. This is a tough time of life. But I KNOW that Jesus is with me all the day. And I know that He won’t leave me. And I know that He will give grace and mercy enough for each moment as I hope in Him.

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Mama’s Changing Faces and God’s Unfailing Graces

Dementia seems so arbitrary. After watching it progress in Mama’s life over ten years now, I’m surprised that it can still surprise me.

And yet it does.

Monday was Mama’s birthday. I brought her homemade cake and lit candles and we sang to her. I got no reaction. Not a word. Not even a raised eyebrow or a hint of a smile.

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Later in the evening, my daughter said, “Grandma, it’s your birthday.”

And Mama calmly answered, “I know.”

A few days later, Mama had massage therapy and music therapy at the same time. I usually just watch Dad’s face as he takes joy in the music, because Mama usually sleeps through it all. But this time Mama looked right at Dad, while Becky sang Let Me Call You Sweetheart, and Mama smiled!

Becky told Dad, who can’t see Mama because of his blindness, that Mom was smiling at him. And oh how his chin quivered and his eyes misted and then how my eyes watered. And Mama stayed alert and awake for the rest of the music and looked cheerful and smiled and seemed to join in with the pleasure of the day.

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Today, the hospice nurse practitioner came to see if Mama still qualifies for services. And though Mom is typically quiet and mellow in the morning these days, today she was agitated and yelling. But the nurse practitioner mentioned how nice she looked. And our regular hospice nurse, Terri, said, “I think pink is her color.” I agreed, thinking Mama looked so pretty in her pink dress with her white hair brushed back from her face.

After the nurses left, I told Mama, “You’re so pretty.”

And she answered, “Yeah, I try.”

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And I think how much her reactions fluctuate. And how startling it can be that though Mom doesn’t know her own name anymore, she can still quickly reply with fitting or witty words at times. Even though other times she says nothing at all.

Dementia still surprises me. Mama uses the word crazy often. She said something about it today and a caregiver asked, “Do you think I’m crazy?”

And Mama calmly replied, “Probably not.”

Dementia is a wild ride with sharp curves and sweet mountain highs and gloomy valley lows. And the thing that keeps me from just crashing is God’s grace.

I was in one of those gloomy valley’s this week and shared some concerns with our understanding nurse, Terri. I told her, “Life is hard. And then it gets harder. At least the end of the story is good though. At least we have heaven.”

And she spoke words of wisdom, learned perhaps through her own valley times.  I wish I’d written down her words, so this isn’t a perfect quote, but basically she said, “God gives us grace each day. Sometimes He seems stingy or slow, but He gives us grace enough.” She spoke with a smile and with the gentle authority of someone who knows she speaks truth. And her words sung courage to my heart.

And I know she is right.

Dementia is arbitrary. The surprises keep coming. We never know what the next day, next hour, or next minute may startle us with. Maybe it will make us laugh. Or maybe it will make us weep. Often it will be heartbreaking. Sometimes breathtaking.

But this we can know. God is with His children. All who trust in Jesus and follow Him can know that He will give grace. Grace enough. For every day. Always.

And the end of the story will be amazing!

“And He said to me, ‘My grace is sufficient for you, for My strength is made perfect in weakness.'” 2 Corinthians 12:9 (NKJV)

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What a Friend we Have in Jesus

What a friend we have in Jesus, all our sins and griefs to bear…

I was in tears. Becky, the music therapist, came again today. Dad requested more hymns this time. And hearing Becky sing How Great Thou Art and Amazing Grace was balm to my soul.

Because it’s been a tough week. A few days ago I had called 911 for my mother-in-law with fears that she was having a stroke. Thankfully she wasn’t, and she’s doing well now. But she spent a night in the hospital with all the anxiety that surrounds that.

We’ve had other stresses I won’t share here, except to say caregiving can strain relationships. And life doesn’t stop because you are caregiving or since someone you love is in hospice. It keeps flowing on, and problems and conflicts and emotions keep crashing like waves, threatening sometimes to flood your heart and pull you down under.

But something about hearing the strum of a guitar, and a lovely voice singing, O what peace we often forfeit, O what needless pain we bear, All because we do not carry, everything to God in prayer, becomes a life raft to collapse on in the storm.

I looked at Mama reclining in her chair, as Becky sang. Mama looked so pale and still. She seems more quiet this week and I’m afraid maybe I really am losing her. Because even though she’s in hospice care, there’s a big part of me that’s in denial. I’ve heard of people living two years in hospice care and I’ve been counting on that all along. At least two years.

But when I see her eating less. And talking less. And moving less– it’s harder. And more fearful. I looked at her today and made sure she was breathing. I remembered how, a few years ago, Dad had called me to come help because Mama had fallen. When I’d walked into the living room Mama was lying on the floor on her side singing, What a Friend we Have in Jesus. And I thought, at the time, what a perfect song to sing when you’re stuck on the floor and waiting for help.

And I wished Mama could join in and sing with us again. But she just rested, pale and quiet. And I blinked back tears.

Dad told Becky that he had altered some of the words to You Are My Sunshine. Instead he sings:

You are my sweetheart, my only sweetheart. You make me happy when days are gray. You never know dear, how much I love you. Won’t you be my sweetheart today.

So Becky sang the song Dad’s way. And Dad’s chin quivered. And my eyes watered. And Mama opened her eyes. So Becky sang it again.

It’s been a tough week. It’s been a hard day. But I’m thankful for the support of our hospice team as they surround us and hold us up with love and caring hearts and hands-on help.

And I’m thankful for the gift of music and the comfort it shines on us, like sunshine breaking through a storm cloud. It’s still raining, and yet somehow we are warmed and cheered in a ray of sunlight at the same time.

And most of all I’m thankful that we truly do have a friend in Jesus. And He does bear my sins and griefs. And I can go to Him in prayer and pour out my heart to Him and know that He is carrying me, and Mama and Dad and my family. We are in His strong arms. We can trust Him always.

Jesus won’t drop us. He won’t let go. He can calm the storm or He can walk on the waves. I can rest in Him and know that He is faithful and good always. What a friend we have!

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What Caregivers Know and You Can Know Too

Mama thrilled my heart twice today!

First when I arrived, I checked in on Mom and gave her a drink. As I was leaving to get lunch, Mama said, “Don’t fall down.” And it so warmed my heart. It sounded like such a motherly thing to say, and I feel short on mothering these days.

And then later, as I was feeding Mama lunch, she looked right into my eyes and said, “I like you.” And oh, I can’t tell you how that fed my soul! Even just to have her look right in my eyes is getting harder to come by these days. She most often stares off into space or at pictures on the wall. So to have her look right at me, right into my eyes, is a blessing. And to have her say, “I like you,” at the same time is a victory!

I thought at the time, I can’t wait to share this. Followed by the thought, Will anyone “get” it? Doesn’t it just sound trivial to most people? Or maybe even sad?

But as I contemplated it I quickly concluded that my fellow caregivers will totally understand what I’m saying. And I know they will rejoice with me. And the ones who have traveled this road before me will “get it”. Completely. No doubt. And they will remember their own victory moments. And they will send me a heart high-five!

Because caregivers know, as no others can, how precious and meaningful a simple sentence can be. They know the deep feelings that can come with a look or a touch. They know how priceless a word can be. They know what a trophy a smile can be.

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Caregivers, nurses, hospice workers and aides are in the thick of the battle.They are pouring their hearts and souls and lives out to meet the needs of others. They aren’t sitting on the bench. They are in the game.

And it’s tough and it’s hard and it can be grueling. But I want to encourage any benchwarmers out there by saying this; you miss the bumps and the agonies and the pain when you sit on the sidelines. But you miss the depth of the joys too.

Don’t tell yourself it’s too hard and that you can’t do it. Don’t stay away from your loved one who has dementia, or any illness for that matter, because it’s too hard for you to bear. Don’t say, “I don’t want to see them that way. I want to remember them the way they were.”

Press through that. Take a deep breath. Pray. Trust God to give you the grace and strength to handle it and plunge in. Make that call. Make that visit before it’s too late. And if the visit is horrible and you leave crying, don’t quit. Go back again in a few days, or a week. Keep trying!

Bring a flower. Bring a cookie. Bring a card or a song or a dog. Just bring yourself and show up and be there. Maybe you’re loved one doesn’t know you at all. I know it’s hard. But the important thing is that you know them. So show that you do. And make some memories for yourself. Before it’s too late.

Do it now. Pour out some love today. Someday you won’t have the chance anymore and you’ll regret it.

Brush her hair. Hold his hand. Sing a song. If he is still mobile take him for a drive or walk. Look at pictures together. Talk about whatever they’re still able to talk about if they can still talk. Share your own life with them if they can’t.

Bring a meal. Mow a lawn. Fix a drip. Wash some clothes. If you’re bedridden or housebound, be a prayer warrior. You can change lives that way! You know what you’re able to do. Look for a need you can fill, and do it.

Press through the fear and the sorrow. Press through! You can do it! With God’s help you can certainly do it!

Be open to the pain and hurt of being there through the hard stuff. Yes, it will be painful. Yes, it will wrench your heart. But you will never know the elation of the victory moments, if you don’t go through the pain. The wins are never as sweet for the benchwarmers. The spectators can’t feel the same elation as the players. The onlookers at the marathon don’t win the medals.

There is someone in your life now who could use a visit. There is someone you could show love to. Press through and do it. You won’t regret giving love. You may deeply regret missing your chance.

Be strong and brave and do it. Maybe this is the day your dear one will look in your eyes and say, “I like you.” Or even “I love you.” Maybe this is the day they will know your name. What if it’s the last day they do? Please don’t miss it.

And as Mama said today, “Don’t fall down.” This is your opportunity. Don’t fall. Don’t fail. Stand up and be part of the team.

“Therefore we also, since we are surrounded by so great a cloud of witnesses, let us lay aside every weight, and the sin which so easily ensnares us, and let us run with endurance the race that is set before us, looking unto Jesus, the author and finisher of our faith…” Hebrews 12:1-2a (NKJV)

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My daughter, Annie, pictured here with my mom, her grandma. Annie is an amazing caregiver!

Have Faith

Being a caregiver has taught me, among many other lessons, that God has a sense of humor. And He often sends me a smile when I need one.

And I’ve needed them a lot lately. Because caregiving is hard. It’s stressful. It can be grueling.

The last few weeks have been especially tough. My daughter, Annie, and I feel the weight of Mama’s care and all the decisions and work and pressure that surround that. And my Dad has strong opinions and is grieving as he is slowly losing his beloved wife.

And sometimes the stress of it all clashes loudly and we say things we don’t mean and emotions pour out in strong words and flowing tears. And I cry out to God, “Lord, we don’t know what to do, but our eyes are upon You!”

And then we pray. And we apologize. And God speaks wisdom through my husband. Calming wisdom.  And we are learning to walk in that wisdom, but stumbling along on the way.

As new challenges come up we have begun to tell each other, “It will be okay.” And “Have faith in God.” And we look for the next wise step to take.

Yesterday, we were having another challenge. Our caregiving agency had assigned a brand new caregiver without giving her any training with Mom yet. They usually have a new person shadow an experienced caregiver first. Thankfully, Annie was available to be over with Mom at the same time, or it just wouldn’t have worked.

Anyway, the good news is that according to Annie, the new caregiver has great potential! And when she was introducing herself to Dad, who is hard of hearing, Dad said, “Fay? Your name is Fay?”

And she answered, “No. Faith. Like faith in God.”