Are We Fighting FOR or AGAINST?

In the battle we wage for our loved ones with Alzheimer’s, we are not powerless.

No,  we can’t protect them from the disease.   We can’t slow it down.    We can’t stop it. If our battle is against Alzheimer’s, we cannot win.

But what if, instead of fighting against Alzheimer’s, we fight for our loved ones?     That’s a completely different war. We can win that war.

“Fighting for our loved ones.” What does that mean?  It means helping them live as long as possible.   So what does that look like?

TX winecupsbluebonnets prairie paintbrush

Dad wants to take Mom on an overnight trip, a drive down to the hill country to see the wildflowers. Bluebonnets, winecups, prairie paintbrushes! But I know spending a night in a hotel room would frighten and confuse Mom to the point of disaster. So I suggest a short drive to some nearby bluebonnet fields. We take sandwiches and eat in the car. It’s good: Mom is relaxed, looking out the car window, chewing her egg salbloomiing tomatoad with serene deliberation. In Dad’s opinion, though, the flowers are a bit sparse. So after we eat, I turn the car toward home. Once there, we take cold drinks out to the back yard and sit in the shade, where we admire Dad’s petunias and periwinkles and coneflowers and the little yellow blossoms on his tomato plants. Victory!

Christmas decorations and brightly wrapped packages cause Mom to ask endless questions. Her shuffling feet show us these sudden additions to the décor are making her nervous. So we back the tree into a corner and put the gifts in the closet for a while. But later we find a funny little motorized tree that we bring to the kitchen table. Only a few inches tall, it revolves, playing carols and shining with tiny multicolored lights. Mom’s not sure about it ’til Dad talks techno treeto her, very softly, telling her—the story of the first Christmas tree? No. He’s telling her about the technology that makes the lights glow and fade and glow and fade. And gradually she relaxes. She even smiles. Victory!

Mom has finally had to go to a nursing facility. She’s bedridden with a broken hip, unable—mentally or physically—to do enough rehab to keep the new hip joint in place. Mom’s not talking much, but I’m grateful she seems unfazed by the move from the hospital to yet another unfamiliar place. Dad, on the other hand, is heartbroken. His greatest wish remains unchanged and unfulfilled: he wants her with him. He expected to bring her home from the hospital; instead, she is in another “home.” He will never be happy, he thinks, without her. fRANK SINATRABut the next day, my sister arrives with a small lamp and a comfy chair and a radio, which she promptly tunes to the “oldies” station. And less than a week after the sadness of moving day, Frank Sinatra is serenading Mom while Dad drinks the coffee the lunch room ladies give him every day. Not home, but comfortable. And together. Victory!

Our weapons in the battle for the lives of our loved ones are not complicated to operate, but it does take some practice to learn to use them in this particular war.

Patience—to withstand the onslaught of questions and complaints. patiencePlanning—to ease transitions and nip difficulties in the bud. planCreativity—to find new substitutes for old habits and favorite activities. creativityGratitude—to encourage us to accept the help others offer. Determination—to keep us gratitudesteady in the face of constant change. optimismOptimism—to persuade us that, no matter what new pain Alzheimer’s inflicts, we will find a way to keep our loved ones OK.

And most effective of all, love—to convince us to fight, not simply for our loved ones’ survival, but for their lives.loveLord, we can accomplish nothing without You, but with You, we can do everything You call us to do. Thank You for helping us bring Your abundant Life to our loved ones.

“Take my yoke upon you and learn from me, for I am gentle and humble in heart, and you will find rest for your souls. For my yoke is easy and my burden is light.”      (Matthew 11:29-30  NIV)

Do They Know We Love Them?

How can we show them our love?

It’s a painful question most caregivers must eventually face. How can we help someone with Alzheimer’s know, believe, trust our love?IMG_0064In the beginning, we caregivers are almost as confused as those we care for. We struggle mightily to appreciate the difference between our loved ones’ willful actions and the words and actions dictated by Alzheimer’s. We ache with the knowledge of what is to come. We do our best to do it all, do everything for them, and yet everything grows every day and what we do is never enough.

Meanwhile our own fear and frustration are a weight we carry, not entirely invisible, revealed in sighs and frowns and impatient words. Time passes while we learn more about the disease and the role we must play.not quite full moonIf we’re wise, we ask for help and accept it when it’s offered. We take care of ourselves as well as our loved ones and in doing so, we keep going. For them.

And eventually we realize that everything we’ve done for them has also been for ourselves. Looking back to before Alzheimer’s, we realize: we’re different. Whether we’ve seen it as a duty to them, a job no one else could or would do, a way to repay the love and care we’ve received, or a privilege we’ve been accorded, our care for loved ones with Alzheimer’s has made us grow.

But we can’t avoid the ugly truth: while we’ve been growing through the pain and the work and the caring, our loved ones have been shrinking. moonliteThough we do our best to see them as they were, we must admit they’ve changed.We can’t see the mother she was, the father he was; can’t imagine her twisted hands sewing a wedding dress, his crooked fingers tightening a bicycle chain; can’t hear the words she used to sing while she polished the floor on her hands and knees; can’t feel the solid safety of his arms as he carried us asleep from car to bed.

We can’t see them as they were. But we remember.

And they remember, too. They must. Somewhere inside our loved ones, they still know what love is, and the memories remain. Where else would they go? They weren’t flesh that they could die, so we have to believe they live on, out of reach because of Alzheimer’s, but living in spite of it.

In those memories, they know our love. They remember when we helped them dress and held the spoon they couldn’t manage. They remember how gently we washed them and how slowly we walked with them and how often we answered their questions. They haven’t forgotten, at least not forever.IMG_0071So it’s up to us. We can choose to trust in the pain we see, the sadness of their forgetting; or we can choose to believe in the joy of the unseen, the happiness of their remembering.

For me, it’s an easy choice. I choose joy.

I would have lost heart, unless I had believed that I would see the goodness of the LORD in the land of the living. (Ps. 27:13 NKJV)

Lord, help us to believe. Help us to trust that in Your perfect care for our loved ones, You make certain they know we love them. Thank You, Father that our love for them is only a shadow of Yours. Thank You for being our Guide through the wilderness of Alzheimer’s.

A Different Kind of Gratitude

Thankfulness that  what-might-have-been  wasn’t  is a different kind of gratitude.

Most of us express it from time to time. Something bad happens and we say, “Oh thank goodness! It could have been so much worse!”  Nothing good has occurred, but we’re thankful anyway.

Relief in the face of difficulty is still relief. Ask any Alzheimer’s caregiver.

But first give us time to regain our balance. A diagnosis of Alzheimer’s is like a punch in the stomach. It knocks the breath out of patient and caregiver alike. The shadowy present turns dark and the future fades to black.

Yet, life goes on. We adjust our vision to what is. We alter our expectations for the future. We adapt to a new normal, because we must.

a wayLife goes on, and with the help of our faith and our friends, we begin again to be grateful for it. Nothing changes for the better…except our perspective.

Our loved ones need us in ways neither we nor they ever imagined, but we’re able to help them.
Conversation becomes more one-sided, but we learn how to reassure and comfort both our loved ones and ourselves with our words.
We sometimes feel overwhelmed with the weight of caregiving, but we learn to ask for help and to accept the help we’re offered.
Smiles from our loved ones are fewer, but those smiles—the ones on their lips and the ones we see in their eyes—bring us more joy.
We mourn that we can’t restore our loved ones to the lives they once lived, but when they can no longer anticipate the new life they are moving toward, we anticipate for them for them, we prepare, and we grow. We, in ourselves…we grow.

joy&gratitudeRelief in the face of difficulty is still relief.

For the help we can give loved ones and the care we can take;
For the words still between us, spoken and unspoken;
For the smiles we can give and the ones we can see and the ones we only feel but believe in nonetheless;
For the growth we experience through helping our loved ones;
For softer hearts and stronger hands, deeper faith and truer hope and love received through giving love;
Lord, make us truly thankful.

“We give You thanks, O Lord God Almighty,
The One who is and who was and who is to come,
Because You have taken Your great power and reigned.”  (Rev. 11:17  NIV)

Father, there may be different kinds of gratitude, but You are the one Source of all blessings. Give us the faith and wisdom to recognize Your good gifts in all their forms and disguises, and remind us always to thank You.

Parenting Our Parents

An incident I witnessed on a vacation many years ago continues to shine a light on one of the hardest tasks of caregiving.

During our hike through a national park, our family stopped in a picnic area to have lunch. As I made sandwiches for my three young sons, I could hear wails from the picnic table next to ours.

“But Mom, it’s my money.” The little boy’s face was red; his eyes were swollen.

An older girl and another boy, siblings, I’m sure, looked almost as sad. They watched the mom as she said, “John, I know you worked hard for this money. But you aren’t taking good enough care of it. If I hadn’t seen it and picked it up, your allowance would still be back there on the counter in the gift shop. You can spend it, but I’ll carry it with me.”

I tried not to stare, but I couldn’t escape hearing John’s next plea: “But Mom! I’m old enough! I’ll do better. Please?”

monkey parent“Johnny,” his mom answered, and I’m pretty sure I heard tears in her voice, too, “I don’t want you to lose everything you worked for. If you lose it, all of us will be unhappy. I’ll take care of it for you.”

I remember how sorry I felt for Johnny. But I hurt for his mom as well. We want so much to make our children happy, but there are times when we just can’t. Sometimes we have to say no.

Since my children are grown now and have children of their own, I thought I was free from having to make those hard choices. I was mistaken. Like many caregivers, I had to step back into the parenting role again.

Parenting my parents.

Mom was in her sixties when Dad realized she could no longer balance the checkbook. Mom had always paid the bills; Dad took over that job, too. As pots and pans were scorched on the stove because Mom forgot about them, Dad became the cook. When he ran out of clean clothes, he started doing laundry. They went to the grocery store together; Dad did the shopping while Mom wandered up and down the aisles, stopping to look at greeting cards or artificial flowers or bars of soap.

Dad kept these changes to himself for as long as he could, but eventually Mom’s behavior became so bizarre it could no longer be hidden.

“Why didn’t you tell me, Dad?” I asked after one of Mom’s harder days.

“Now Katrinka, I wasn’t hiding anything. I figured your mama just wasn’t interested in her old routines anymore.”

Balderdash. You don’t raise your children or your parents without coming to know them inside and out. And I know that, inside, Dad was 1) afraid of the possibility Mom was ill, and 2) determined that if she was ill, he would keep their home running just as it always had. “Normal.” That’s what he wanted. The two of them living in the pink brick house, taking care of each other, as they had ever since they were married.

help when you need it

While they did stay in their home, “normal” became me spending my days with them in the pink brick house. At first I helped Dad take care of Mom. Later on, when macular degeneration rendered Dad almost blind, I found myself more often in the role of parent, mainly to Mom, but sometimes to both of them.

Remember when you put things like scissors and knives and matches away, out of sight and out of reach of your children? That’s one of the first things I did when I discovered Mom had Alzheimer’s. I hid anything I could imagine might cause her harm if she used it incorrectly.

And that was just the beginning.

Dad and I had to watch closely to make sure Mom didn’t turn on the range or other appliances. Once I found her using one of Dad’s screwdrivers to open a package of paper table napkins, so the tools were moved to a safer place. We no longer left Mom at home alone, even when she insisted she’d “be fine.” She would sit right where she was, she said, while I drove Dad to the bank or the post office. But I had to say no; Mom had to come with us. She didn’t cry like little John did. She became angry, shouting and waving her arms. We’d wait, ask her later if she’d like to go for a ride, and sometimes she said yes. When she said no, Dad and I postponed our errand.

Out of desperation, sometimes I treated Mom as I had treated my sons when they were children. I often bribed her with ice cream or lunch at her favorite café if she’d go to the doctor with us first. Sometimes I made up stories about the magical powers she would gain by taking the medications she didn’t want to take.

Like Johnny’s mother, I knew I had to take charge. Certainly Mom, and often Dad, too, simply weren’t capable of using good judgment when making choices and decisions. Mom, of course, was impaired by Alzheimer’s.

rabbits eye to eyeDad’s judgment was impaired by his love for Mom.

The no’s to Dad were always hardest. No, it wasn’t a good idea to plan a big party at a restaurant for Mom’s birthday. No, taking Mom camping “one last time” in their bright yellow tent might be fun for him, but not for her. No, I didn’t think it was wise to take a long trip in their travel trailer. No. No. No.

Like Johnny, Dad made promises. He promised to ask people to be quiet at the party. He would gladly pat Mom’s back ‘til she fell asleep in the tent. He was sure she’d love a trip in the trailer, but if she asked to come home, he’d bring her home, right away. He promised to tell me when he couldn’t see well enough to drive.

normalFrom Dad’s perspective, I’m sure it didn’t seem too much to ask for simple, normal life. How I wanted to give him just that! And I tried. But from my perspective, it was a struggle to maintain whatever modicum of normal we could hold on to.

Of course, Alzheimer’s was the problem. Both Dad and I tried to say no to Alzheimer’s. Neither of us was successful…except in one regard: somehow we managed to say no to the disease stealing all our joy. Specifically, I kept my eyes and ears and heart alert for the occasions when life felt like old times. I made sure Dad noticed on mornings when the three of us sat at breakfast with toast and tea. I rejoiced openly when we arrived home from the store and Dad and I put away groceries with Mom telling us what to put where. I prayed with gratitude as my husband and I watched Gunsmoke with my parents: Mom asking the name of each character, Dad answering her and then offering everyone something to drink.

foxesNormal.

As I held on to as many of the routines as I could, I also held on to my temper. Usually I was able to resist the frustrated tone that tried to creep into my voice; instead, I held on to the respectful attitude I had learned from my parents. There was no question in my mind that each of them deserved my respect as much at this time of their lives as they ever had.

Easy? No. Whoever said, “The hardest thing about everyday life is that it’s every day” spoke truly. And most caregivers recognize the words as an extreme understatement.

But let’s also be sure to recognize the bigger truth of caregiving:
As we work to preserve what we can of the “normal” life of the past, we’re also safeguarding—in the present—something even more precious: our loved ones’ dignity.

Children, obey your parents in the Lord, for this is right.  “Honor your father and mother,” which is the first commandment with promise: “that it may be well with you and you may live long on the earth.”   (Eph. 6:1-3 NKJV)

Father, help us to be patient with those we care for as You, Father, are patient with us.

For What We Have Received…

Caregivers realize better than anyone else what Alzheimer’s steals from our loved ones.

Though all too aware we cannot succeed, we keep fierce watch, fighting to keep the disease at bay. Yet day by day we see it snatch away not only memory, but activity, relationship, expression—all the things that define our loved ones as the unique people they are.

But there’s another kind of watch caregivers keep, another kind of awareness we are specially equipped to maintain: the awareness of what remains. If we watch our loved ones with eyes focused on signs of their well-being, we’re blessed with glimpses of pleasure others might miss—like a simple conversation, enjoyment of a favorite meal, or the look in a loved one’s eyes that says “I see you” or “I like that.”

As caregivers, we sense the things that make those we care for happy. The things that give them peace. The things they’re grateful for.

So…we give thanks. On their behalf, and on our own.

 *******************************

He’s allowed to touch Mom when no one else can. On the very worst days, when everything inside her rebels against our efforts to help, she will stop fighting and sit with him—for hours. And he, expecting nothing, can eventually gain all that we hope for: her calm, her cooperation, her comfort.  The wonder-worker is Charley-Dog, a silver miniature poodle, handsomely groomed about four times a year, the rest of the time as scruffy as Mom. He sleeps at her feet and when she stirs, the jangle of his collar alerts us. When Mom refuses to eat, the prospect of feeding Charley from her plate can induce her to accept a few bites herself. She always knows his name, never shouts at him, never turns away his affection. And she often tells him important things she won’t tell us, like where she hurts or what she wants or why she’s scared. Thank the Lord for Charley-Dog.

Potato chips are Mom’s favorite food. Even Charley doesn’t get a share of her chips. Too salty, too greasy, with insufficient nutritional value, they’re still a life-saver when she’s refused everything else all day. They’re also the ultimate distraction from imagined offenses I’ve committed. And they’re salty too, so Mom drinks more water when she eats them. If she could, Mom would thank You, Lord, for potato chips.

A smooth wooden rail is attached to the wall on Mom’s side of the bed. At least once a week, she calls it to my attention. At bedtime I walk at her side and she grips the rail, stopping a couple of times in the short, queen-size distance to run her finger along the grain of the oak. “See this, Child?” she asks me, looking intently at the rail. Then, turning her head to look just as intently at me, she says, “It’s new. Daddy made it for me. I love it.” At the last three words, her eyes smile, and sometimes her face does, too. I admire Dad’s handiwork anew each time, and thank the Lord Mom has noticed, she has explained, she has smiled one more time.

“Daddy.” Since my sister and I were born, that’s what Mom has called my father. I heard her use his given name only on the rare occasions when they argued in front of us. But now, even when she’s angry, if she calls Dad anything, she calls him “Daddy.” Maybe she doesn’t remember his name. But by the grace of God, she’s never forgotten him. She appears to understand that he belongs in the house, that he won’t hurt her, that she can trust him. When everything else in Mom’s world seems to be going awry, she reaches for Charley and calls for Daddy. And he’s always there. Always. To him she will always be beautiful, his best friend, his love. He will fight for her health, fight to make her happy, fight to keep her with him. Alzheimer’s has a formidable enemy in Daddy. Thank You, Lord, that he is her defender and she knows it.

Finally, Lord, I believe if she could Mom would thank You for me. On an almost daily basis, she shouts at me, ignores me, tells me to leave. But she also makes sure I see the birds on the birdfeeder, saves part of her cookie for me, and lets me bathe her every month or so. She never calls me by name anymore, but on some sweet nights after I’ve helped her to bed, she smiles up at me and says, “Child, I don’t know what I’d do without you.” And I answer, “Well, you never need to worry about that, Mama, ‘cause I’ll always be right here.” The look on her face tells me she believes me.

For that look and for Mom’s smiles, for all the things that still bring her comfort,  and for showing me and Dad how to recognize her pleasure, I thank You, Father.

…Lord, make us truly thankful.

 “Now, our God, we give you thanks, and praise your glorious name.”

(1 Chronicles 29:13    NIV)