God is Here

It’s been a tough week. On Saturday we thought maybe God was taking Mama home to Him. She wouldn’t wake up no matter what we did. She was unresponsive. She was so cold. Her breathing was erratic, with long, scary gaps. I was sending messages to people asking for prayer. I was comforting my crying daughter and trying to stay calm myself.

But after many hours she did wake up! And she ate a very late supper. And we all exhaled a big breath and smiled. We hadn’t lost her. Not yet. We could savor some more cuddles. We could still hold her hand and feel her squeeze back in response once again.

The next day, Sunday morning, Mama told my daughter, “God is here.”

Annie answered, “Yes, He’s here.”

Mama said, “He is bigger.”

And we continue to take comfort in those precious words. Because even though Mama rarely seems to know who we are anymore, if at all, she knows that God is here. God is with her. God is with us. And He is bigger. Bigger than Alzheimer’s. Bigger than our pain and sorrow. Bigger than our stress and worries and fears.

God is bigger.

I’m so thankful Mama knows this. I’m so thankful God continues to teach us through the few words Mama says these days.

Other concerns and stresses weigh down on us too. Our prayer list is long. This is a challenging season of life as we oversee the care of three elderly parents, one who lives with us. Sometimes I feel overwhelmed and cry and call out for help and prayer.

And I feel the comfort of God in kind words and offers from friends. In family members who step in and help. In devotional passages and Bible verses I read. Like one I read today…

“If I say, ‘My foot slips,’ Your mercy, O Lord, will hold me up. In the multitude of my anxieties within me, Your comforts delight my soul.” Psalm 94:18-19 (NKJV)

Yesterday I cuddled Mama before supper, “Mama, it’s me…Cheryl.” She repeated my name so clearly! I rarely hear her say my name and often it sounds slurred. But yesterday she said it clearly twice! “You said my name, Mama! Thank you!”

She answered, “Yes, Ma’am.” Which made me smile even more and gave a nod to her Southern upbringing. I’m grateful for this gift of hearing Mama say my name again. And especially for the pricelessness of hearing her speak of God’s presence.

God is here. He is bigger.

GOD is here. God IS here. God is HERE!

And He is bigger!

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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 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.”

Where Does My Help Come From?

On Saturday I held my newly born granddaughter for the first time and I slipped my hand under her blanket and felt the soft smoothness of her shoulder and back and tiny feet and I soaked in her sweet beauty as she slept in my arms.

And today I cuddled Mama in her bed. She was so weak this morning, we didn’t dare get her up. We propped her up for a sponge bath and a change of clothes and some food. And later I eased her back down to one pillow for a nap.

I combed my fingers through Mama’s hair and patted her back. I said, “I love you, Mama.”

She answered, “I did, too.”

“You loved me, too?”

“Sure!” she answered. And my heart smiled.

I lay close to Mama, with my back to her, like Daddy sleeps. And Mama put her arm around me and flutter tapped my tummy. And I reveled in the cozy warmth.

As I laid there my thoughts drifted to yesterday, when I got a call from Mama’s care giving agency. I was told one of our favorite care givers, “Patti”, is leaving us, because she just thinks she can’t do enough for mom. She says she loves mom and us.

The manager who called said Patti  even cried about resigning  from us. I wonder if it’s too hard for her to see Mama declining. And I wondered if the manager could tell that I was crying over the phone, hearing about the resignation.

Because it’s difficult to find care givers that are excellent. And when you are blessed with one it hurts so much to lose them. Especially when you need them more than ever.

I prayed when I heard the news. “Lord, what are we going to do? How are we going to get enough help?”

And I immediately heard in my heart, “Where does my help come from? My help comes from the Lord, Who made heaven and earth.” Psalm 121: 1b-2

And I smiled. And I nodded. Yes, Lord. My help comes from You. You–the Creator of heaven and earth. The Creator of everything! You are certainly able to help with our problems. With anything. I will trust You my Abba Father. And I will know that you will give grace and strength and provision as we need it.

I turned over in bed and faced Mama. And I stroked her face and her arm and marveled how the softness reminded me of our grand-baby’s skin. And I snuggled close to Mama and her peaceful beauty as she slept.