Tissues in Your Pocket

Most Alzheimer’s caregivers realize early on that we have little control over what any day will bring. Planning each day in advance may give us a sense of control, but so much of Alzheimer’s is unpredictable. Based on my experience, caregivers spend at least as much time reacting as acting.

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One of my mom’s major goals in life was to be prepared for anything that might happen to her or her family. I remember her purse was both tool box and first aid kit, containing a screwdriver, bandages, string, scissors, various nuts and bolts she had found on streets and sidewalks—once I even saw a fish stringer in there. But the things we used most often were the tissues she always carried. She stuffed her already bulging purse with them and stashed them in every pocket on any piece of clothing she wore, “just in case.”

“Just in case.” That phrase covers a lot of territory for caregivers. We can’t predict what might happen in the next few minutes, much less the next few hours. But…unpredictable doesn’t have to mean unprepared.

For caregivers, being prepared is a state of mind.

I wish I had seen that truth earlier. Instead, of all the emotions that rolled over me during my first weeks of caring for Mom, fear was predominant.

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Fear hung around long after shock left. I spent only a couple of weeks being surprised at things like Mom putting Dad’s shoes in the trash, or telling me how lovely the artificial flowers smelled at the grocery store, or accusing the neighbors of peeking into the windows. I soon learned such things were simply to be expected.

Anger lasted longer. I was angry at the disease, at my father for hiding it for so long, at myself for missing the signs, and, yes, sometimes at my mother who often seemed to enjoy the chaos she created. But after a while, anger became a motivator. My frustrations prodded me to look harder for cause and effect relationships I could use to smooth the rough road we traveled each day.

For example: I learned I didn’t always have to explain to Mom what I was going to do. Announcing I was about to brush her hair or help with her shoes often resulted in a barrage of “No’s,” maybe because she felt I was telling her what to do. So I began to say less and simply do what had to be done. When my actions were a surprise to Mom, it took a minute or two for her to puzzle them out. By that time the job was usually finished. Using the disease against itself lessened my anger and fueled my confidence.

Still, fear of catastrophe stuck around for a long time. I was afraid the time would come when I couldn’t control Mom’s anger and she or someone else would get hurt. Would I be able to get her to take her medications every day? What if I couldn’t make her get into the car? Or out of it?state-of-emergency

Adding to the pressure of my fear was the feeling I absolutely had to make things work. I had stepped into caregiving of my own accord. No one asked me to. Dad couldn’t do it alone, and he refused to allow a nurse or professional into their home. So, ignorant of what I would be facing, I just jumped in. But after only a few weeks, I began to question whether I could manage Alzheimer’s alone. I started each day with dread, praying for help, praying for a miracle.

And you know what? Miracles came. Not the sudden cure I hoped for, but miracles nonetheless. Little ones I almost didn’t notice at first, like a close-in parking space when we were running late to an appointment. There were big ones, too, huge ones like the doctor who finally found that Alzheimer’s wasn’t the only danger Mom faced: He diagnosed her severe depression and prescribed the medication that gave her, for a while, more good days than bad.

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In fact, so many miracles came my way, I began to expect them. On some otherwise-impossible days, Mom would at least agree to take her meds. When we were out of the house, I realized people seemed to sense her instability. I learned how to steer her away from situations that, I knew from experience, might provoke her anger. If she refused to get in the car, I postponed the errands and rescheduled the doctor’s appointments. If she refused to get out, I sat with her until she got tired of saying no.

Although some of the solutions worked pretty reliably over time, I knew no amount of advance planning could ever address the daily challenges of Alzheimer’s. But I was freed from paralyzing fear because I began to expect an answer in difficult situations. And because my trust was based, not on my power, but on the power and faithfulness of God, I stopped imagining disaster. Because I believed  the Giver of all good gifts, the Maker of all miracles,was on my side, I could think more quickly and clearly, come up with a way, find one more miracle.

As the Alzheimer’s progressed, Mom continued to pick up her tissues and put them in the pockets of the old green cardigan she wore every day. I took a few out every now and then, secretly of course, so she’d have room to add more. The day came, though, when it no longer occurred to her to pick them up. So Dad and I did it for her. Putting a fresh tissue, carefully folded, into her sweater pocket made us feel a bit more powerful in the face of Alzheimer’s. “Now, Mama,” I’d say. “Now we’re ready for anything.”

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For me, the miracles that carried us down the rocky roads of Alzheimer’s are like tissues I saved in the pocket of my spirit. There were so many problems, but so many more miracles. And each problem solved was a promise of more solutions to come.

I pray you fill your own pockets with confidence. Begin to expect miracles. Watch for them. And in the hardest times, remember the ones God has already sent. Each one carries His assurance: He is with you, to help you. He will never leave you alone.

With a pocket full of faith, we’re ready for anything.

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You will not need to fight in this battle. Position yourselves, stand still and see the salvation of the Lord, who is with you….Do not fear or be dismayed… for the Lord is with you.     (2 Chronicles 20:17   NKJV)

Loving Father, we know You are on our side. We know You can do all things. We know You want us to come to You with our fears and our needs. Thank You for fighting on our behalf. Even in the face of Alzheimer’s, Your constant love casts out our fear.

 

A Big Mistake

My father was going blind when I began helping him care for Mom. There was a lot he couldn’t see: how dirty her hands were, the stains on the shirt she’d been wearing all week, the mold on the cheese he and Mom were still eating. Dad thought he’d been doing a bang-up job with taking care of Mom and the house and the shopping and laundry, and I couldn’t bear to burst his bubble.

So I made a big mistake: I didn’t mention the dirt. I just cleaned it up.

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Some days I found it hard to climb the three steps to the porch, put my key in the lock, and sing out a cheery “Good morning!” to Mom and Dad. There was no way of predicting how Mom would feel and act—would this be the day I feared most, when I couldn’t find a way to calm Mom down and had to call for help? I knew Dad felt the same dread—I could read it on his face—but I wanted him to be able to relax while I was there.

So I made a big mistake: I smiled and acted calm all the time, happy and confident and never flustered.bad idea

When Dad and I took Mom to the clinic, the doctor directed most of his questions to me. I didn’t want Dad to feel insulted that the doctor turned to the patient’s daughter instead of her husband.

So I made a big mistake: I sat back and let Dad answer all the doctor’s questions. If I had anything to add or correct, I did it by telephone later.

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I didn’t recognize my actions as the mistakes they were until Mom was no longer in my care. As she lay in a hospital bed after surgery for a broken hip, the hospital social worker told us Mom would be released, but only to a care facility. She was unable to do the necessary rehab and wasn’t strong enough to go home. She had to go to place where skilled staff could meet her needs.

Dad shook his head. “No. She won‘t go to one of those homes.” When I didn’t immediately back him up, he turned to me with a look of shock. “We can do this, Katrinka. There’s no need to send her anywhere. We can do it at home, right?”

My father was a  reserved man, but virtually everyone who met him came to know one critical fact about him: he lived for my mother. He needed no one but her. Wanted no one but her. And from the very beginning of our journey through Alzheimer’s, I knew his one goal was to keep her at home. With him.

So my heart broke to hear his plea: “We can do this, Katrinka, right?”

He expected me to say yes. To smile with a can-do attitude, let him do all the talking, let him make the decisions.

That’s when I realized the mistakes I’d been making. Essentially, I had lied to Dad.

  • I had let Dad think he’d done a great job caring for Mom before I stepped in to help, keeping from him the dangers posed to both of them due to his bad eyesight.
  • I had purposely let him think that taking care of Mom (and him) was no problem for me at all.
  • I had let him assume that he was alone responsible for directing the doctor, that all decisions about Mom’s care were based on his input alone.

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I should been frank about the sometimes filthy conditions he and Mom had lived in. I should have told him how overwhelmed I felt, how exhausted I was handling the caregiving alone—especially since it might have prompted him to share his own feelings with me.  I should have spoken to the doctor in front of Dad, so he’d know that what he saw of Mom and her illness was limited by what he wanted to believe, and that the doctor needed to hear all the truth in order to keep Mom as healthy as possible.

I should have told Dad the truth.  Telling the truth back then might have eased the pain I was about to inflict by speaking to him now what he had to hear.

“Daddy, no,” I said. The social worker stepped back to give us some privacy.  “We can’t do it at home. This is different.”

His square hands hung at his sides in a way I’d never seen before. I was used to seeing them hold something—a wrench, a hammer, clothes for Mom or a glass of juice. Or if they weren’t working, they were thrust in his pockets, jangling his change and car keys. Now they just hung from his wrists with nothing to do.

In the face of his pain, I willed myself to continue. “Mom needs more care now than you and I know how to give, Daddy. It’s up to us to see that she gets what she needs. We have to let this happen.”

It did happen. More swiftly and smoothly than I could have imagined. In his relentlessly hopeful way, Dad spoke of it as a temporary situation, just while Mom rested and regained her strength. Then she’d be back home with him. Again, I didn’t contradict him. It was far too late for that now.

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My point for other caregivers is this: Be honest. Don’t pretend.  Do what you have to do; say what you have to say.reality

In my case, the truth might have resulted in better care for Mom. Being truthful with Dad would have shown him far more respect than trying to protect him from hard realities. And being honest in expressing my feelings and asking for help would have resulted in a better situation for all of us—Mom, Dad, me, and my family.

I thought I was being kind. I wasn’t. I thought I was being strong. I wasn’t. I thought I was protecting Dad. But I was trying to protect myself, too. It didn’t work. Trust me: facing the pain together—from the very beginning—would have been easier on both of us.

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He shall cover you with His feathers, And under His wings you shall take refuge;
His truth shall be your shield and buckler.  (Ps 91:4  NKJV)

Father, with You there is strength in the face of all difficulty and pain. Be with us, we pray, and help us serve and protect our loved ones with the shield of Your truth and mercy.

 

Pure Pleasure

Fun is a commodity in short supply in homes where Alzheimer’s lives. Who can tell what will bring our loved ones pleasure? Well, if we pay close attention, sometimes they tell us themselves.

Searching for pleasant activities for our loved ones with Alzheimer’s is like seeking the end of the rainbow: you’re not even sure it’s out there to be found. One by one, the usual pastimes fall away. Reading a book, watching TV, sewing, crafts, even talking on the telephone—now these things bring more confusion than pleasure.

I tried working simple puzzles with Mom. I got out old photographs. I named farm animals and we (well, usually it was only I) made barnyard noises together, and at least once a week I heaped all the napkins and washcloths in a pile in front of her so she could  fold them, painstakingly, one by one by one.  All those activities were successful at some times, and decidedly not at others. So I spent lots of time searching my brain for rainbows I just couldn’t see.

And then, one particularly frazzled evening, I discovered that sometimes Mom could find her own entertainment.

It wasn’t unusual for Mom to be grumbling nonstop while Dad was trying to watch the evening news. The louder Dad turned the volume, the louder Mom talked. This night she was upset about illegal birds on the fence and dirty rats (squirrels, actually) on the lawn. I was preparing dinner as quickly as possible, when she called me out of the kitchen.  “Look, Child!” she said. I looked. She was staring at a closeup of the weatherman on TV.

talking teeth“Look, Child! Look at his teeth!”

I looked again and, since some comment was clearly in order, I said, “Oh my! What nice teeth!” As the weatherman bowed out and the news anchor returned, I had an inspiration. I said, “Look, Mama. Look at his teeth.”

Thus began an hour or so of dental reviews. Mom watched for people on TV to open their mouths; when they did, she had a prompt comment on their teeth. I chipped in my opinions a few times, and we were entertained ‘til almost bed time. I never knew when Mom might begin another tooth pageant, so on ragged evenings I learned to start them myself. Sometimes it worked, sometimes not, but it was another tool in the arsenal. And Mom discovered it.tooth examPlease know I’m not suggesting you try doing dental reviews to entertain the person you’re caring for. The point, of course, is that something caught Mom’s attention and I capitalized on it. She was alert and comfortable and calm for a while. That’s entertainment.

I noticed other pastimes Mom initiated. One day at the megamart, she stopped beside a display of artificial flowers. Leaning over to put her nose against the petals, she drew a deep breath. “Oh, they smell good,” she said. “Smell!” I did. From that day on, we often stopped to smell the flowers, real or artificial.

artificial flowersSometimes when Dad and I were talking, I could tell Mom wanted in on the conversation. She rocked forward and back in her chair, looking from me to Dad to me to Dad. When she was finally ready to say something, it was often a compliment. Maybe something like “Child, I like your hair.” One day, instead of simply saying “Thank you!” I returned the compliment. “I like your sweater today!” With another word to use, “sweater,” she commented on my sweater, whether I was wearing one or not.  Back and forth we found other things we liked about each other. Sometimes Dad joined in, too. If Mom ran out of words, we just started all over again. During times when she was anxious, I could often calm her with a compliment. And sometimes a whole conversation would ensue.

Did these diversions always work? No. But when they did, they were pleasurable to all of us. Mom was able to take off the blinders Alzheimer’s had thrust on her and look at the world around her. She wasn’t nervous or scared, searching for words or wondering what was going to happen next. And yes, I was willing to examine every tooth, smell every flower, and compliment her ‘til the cows came home just for the pleasure of seeing her that way: engaged, comfortable, with life in her eyes.

compliment quoteI spent much of my time as a caregiver protecting Mom. As I watched her, I was asking myself “Everything ok? Everything ok?”  Sometimes I’m sure my caution prompted some of her anxiety. But my close attention also helped me understand something miraculous: Mom could still find pleasure, and I could help her enjoy it.

I urge you to watch, too. The key, of course, is to notice what they notice, and mirror their reactions back to them. Take your pleasure wherever you and your loved one find it. Run with it and don’t look back to see if people are watching. If they are, they’re seeing miracles.

The Lord upholds all who fall, and raises up all who are bowed down. You open Your hand and satisfy the desire of every living thing.  (Ps.145:14,16  NKJV)

Father, we thank You for the miracles You give us every day. Please continue to open our eyes to the help and comfort You are faithful to send us as we walk the Alzheimer’s road.

 

 

 

 

 

 

Just the Facts, Please

The only way to look at Alzheimer’s Disease is straight on. Unblinking.

Face reality.

Not easy. Especially in the beginning, the disease lures us into false visions. The good days look just fine. “Normal.”  Difficult times? It’s easy to tell ourselves they’re caused by a misunderstanding of some kind, or the aches and pains of getting older.

realityBut the illusions last only so long—would that we could predict exactly how long!—before we can no longer ignore the reality of decline. At that point, we begin to feel as though we’re flying by the seat of our pants. Barely managing to keep the lifeboat afloat. Walking a tightrope in the dark…without a net. We navigate by instinct, bail as fast as we can, and slide ourselves across the chasm with a bravado born of blindness—the darkness hiding not only what lies below but also what looms ahead.

We hunger for information. Information is power; power gives us some level of control; and we long to gain control. But Alzheimer’s doesn’t come with a navigation system or weather forecasting or safety nets. There is no uniform set of symptoms, no universal timeline, no advance notice of sudden changes. Pinning down the facts, just the facts—the who, what, when, where, and why—of Alzheimer’s is a seemingly impossible task.

any questions First we look to science: What signs should we look for? Any treatments on the horizon? Any cures?

But eventually—and always too quickly—we’re just searching for ways to get through each day. We want to know more about how to help our loved ones feel safe, stay connected, and live at their best—today. Here, definitive answers are even harder to come by, because the challenges of living with Alzheimer’s are unique to each personas unique as his or her personality and experiences.

factIs there no answer then to the question of when to take away the car keys? No answer to what does sundowning look like or how to handle wandering? Well, if we look at Alzheimer’s and caregiving factually, no, there is no one answer to those questions.

Realistically speaking, though,  we know there ARE answers. There are helps. Some we’ve seen. Some we’ve read about. THE answer for everyone? No. But options, YES! Looking realistically means letting go of the idea that there’s only one right answer to each question. Looking realistically means we can look at the WHOs instead of the WHO; the WHATs instead of the WHAT; the WHENs and WHEREs and WHYs instead of expecting a single, uniquely correct, factual response to our questions.

And looking realistically means that even though none of us has all the facts, we can share the information we do have.Hands raisedOur next five posts on this blog will do just that. We’ll explore each of those five issues: the WHOs, WHATs, WHENs, WHEREs, and WHYs of Alzheimer’s. We’ll be looking at each of the topics subjectively, dealing not with statistics but with common experiences. So we can learn and share.

optionsMany questions and many answers make for many options.

Caring for a loved one with Alzheimer’s is a generous and loving but demanding and strenuous challenge. That’s a fact. But it’s also a fact that we need not face that challenge alone.

“Ask, and it will be given to you; seek, and you will find; knock, and it will be opened to you.” Matthew 7:7 (NKJV)

Lord, You are the source of our hope and our help. Please remind us that we belong to an army of caregivers, each of us fighting the same battle, all of us searching for the same answers. Help us help others as You help us all.

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)

The Bluebird of Happiness

Often it seems nothing we can do or say will bring happiness to our loved ones with Alzheimer’s. Since they gradually lose the power to choose their own pleasure, caregivers are left to use trial and error to guess what might bring a smile.

angry bluebirdFor me, when often became even more often, and even more often became ‘way too often, I re-discovered a happiness strategy from back before I was a daily caregiver…back when I was a daily mom. What I remembered is this:

Sometimes it’s what we don’t do that makes the difference between sullen and happy in those we care for.

I remembered the occasional evenings when I allowed my sons to skip a vegetable at dinner time…and decided maybe Mom didn’t need to wear fresh clothes every day. Some days I didn’t insist she drink a full glass of water at every meal; if she wanted juice at lunchtime, that was fine. No socks with her tennis shoes today? OK.

slim bluebirdWhen I let some things slide, I found that, even if I couldn’t always get her to smile, I could at least erase her frown.

Why was it that skipping an action worked better doing something?

I believe the “never mind’s” worked better because the “please do’s” were beyond Mom’s grasp. She was able to let me know if something we were doing was UNpleasant, but she could no longer think of things she might enjoy. Or maybe she could think of some things some times, but she wasn’t able to put them into words.

The things we skipped depended, of course, on our activities for the day and, even more so, on Mom’s safety and hygiene. If we had a doctor’s appointment scheduled, I couldn’t let Mom go out without shoes. And we always had to keep her hands clean. Getting Mom to take her medications was a must; making sure she drank enough fluids was a must; and there had to be a limit to how many days she could wear her favorite outfit without washing it.

The “must’s” were seldom easy. But they were possible. How? By accommodating Mom’s wishes the same way I used to accommodate my children. I said yes as often as possible and insisted on no when it was necessary.

And I went a step further with Mom. When I had to insist she do something my way, I tried to include an enticement of some kind.snowy bluebirdFor example:

If Mom scowled when I came toward her with shoes in my hand, sometimes—on days when I knew she could stay indoors—I was able to agree: “No shoes? OK.” But if we had to go out, I had to insist. “Well, you’re going to need shoes today. But here…why don’t you feed Charley-Dog some treats while I help you get your sandals on?” I knew feeding Charley was a fun–and dependable–distraction.

If Mom refused her lunch, I could say, “OK, but I’m afraid you’ll be hungry later. Tell me if you are, please.” If, however, she had already skipped breakfast, I had to insist she eat at least a few bites. And I usually had to feed her myself. Beginning with a potato chip got us off to a good start, and a couple more interspersed through the process helped me keep things moving.

When it came to clothes, I almost always let Mom wear her threadbare or hole-y favorites, which I put through the washer and dryer after she went to bed. As long as she was clean, dry, and modest, she was fine to go wherever we had to go. If her old clothes made her feel better, we were happy for her to wear them.

Please understand: when I say I used  some of the same strategies with Mom that I used with my children, I mean no disrespect to her. Alzheimer’s had robbed her of reason, judgement, and self-control. To expect things from her she could no longer give would have been cruel. Instead, I simply made it easier for Mom to go along with the necessities. And I had no fear of her expecting the same “privileges” every day–each day was all too new for her. I believe Mom remembered me and Dad when she awakened in the mornings; that much memory allowed her to trust us, at least most of the time.

Our loved ones with Alzheimer’s travel through life constantly on the edge: not remembering where they’ve been, unable to see where their next steps will take them. So it’s up to us to be flexible. We must make their paths as wide and comfortable as we can, by putting as few demands on them as possible.

nervous bluebirdHappiness for someone with Alzheimer’s? I think it’s like a little bird, a nervous little bird, to be sure, but willing to rest in a spot feathered with reassurance and safety. If we provide a house and fill it with all the comfort and security we can manage,

flying homeeven if we don’t often see the little bird, we can trust that our loved ones are all right.

Blessed are those who have regard for the weak; the Lord delivers them in times of trouble. The Lord protects and preserves them—they are counted among the blessed in the land….  (Ps. 41:1-2  NIV)

Lord, you are the source of all our wisdom. When we turn to you and ask for help, you always answer. Thank You for helping us help our loved ones.

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.