Exquisite

Caregivers recognize each other.

Yes, each caregiving path is unique. As different as each caregiver and the person he or she cares for, as different as their environment and lifestyle and family or lack of family—as different as each of our lives is different.

But unique as we are, caregivers recognize each other. With a pang of empathy and immediate respect, we recognize each other.

On Easter Sunday, my husband and I met one of my sons and his family at a restaurant for brunch. At a big round table in a beautiful dining room, our oldest son and his wife and our three senior grandchildren entertained us in the way only they can do—just by being themselves, unique individually and a unique unit in our larger family.

Though the room was full, the tables were arranged so everyone had plenty of elbow room. But when I felt a touch on my shoulder, I realized I was just a bit in the way of an older man guiding his wife’s (my assumption) wheelchair across the thick carpet.

“Oh, excuse me!” I said. I adjusted my chair, noting as I did so the gentleman’s well-polished wingtip shoes. (Wingtips always remind me of my father.)

Without making eye contact, the man nodded and moved on. As he walked away, I noted his carefully trimmed silver hair and handsome dark blue suit, and wished I had gotten a longer look at the lady in the chair. Then, just about the time I decided they must have been leaving the restaurant, I saw them coming back in our direction. Their table for two was just beyond us. I made certain they had a clear path this time and took the opportunity to see the lady who was dining with this debonair man.

My first thought when I saw her was Exquisite! Smooth, pale skin with little makeup, just a touch of blush, it appeared, and rose-red lipstick. Her dress draped her shoulders and lay across her knees with the unmistakable soft sheen of silk; her hands lay crossed on her lap; her feet rested in baby-pink, low-heeled pumps on the steps of the wheelchair.

My second thought was Alzheimer’s. Her husband wore shoes like my father’s; she wore the expression and air that had settled over my mother during the years of her decline into Alzheimer’s.

Our lovely celebration continued. My grandsons teased their big sister as they always have and she enjoyed it as she always does. On their parents’ faces I saw reflected the amazing light of their children. Harold and I basked in the light of the generation sitting with us and the later ones we expect to see. It was one of those exquisite occasions that marks and highlights the sweetness of life.

At the table just beyond, there was silence. Courtesy kept me from watching them openly, though I doubt they—he—would have noticed if I had. I did glance over occasionally and each look confirmed my second thought. I saw him reach across her plate and, with a smile, offer her a spoon. She looked at it, then at him; he laid it on her plate. At one point, her expression changed ever so slightly—was it a smile? He ate slowly, deliberately, watching her, always watching her. No talking. Just watching. I don’t think I imagined the look of exquisite pain I saw on his face.

We were sampling each other’s desserts when he wheeled her across the carpet again. This time they didn’t return.

Later, at home, I surrendered to thoughts I had pushed away as we celebrated.

This man had taken his wife to Easter brunch. Was it a tradition for them? Had he chosen her clothes? Put blush on her cheeks? Applied her lipstick? How long had it been since she got dressed up on her own? Stroked perfume across her wrists, straightened his tie, handed him his handkerchief? Had it been sudden, the silence? Or had it been that slow decline that let him deny reality, hope against hope? How did it feel—having someone leave who is more than half your life to you? Just leave? Leave you alone, to take care of them alone?

If I had asked my father that question—how does it feel, Daddy?—while my mother was still alive, he would have given me his standard answer to my concern for his well-being : “It’s ok, Baby. It’s fine. I’m fine. We’re fine.” It was true, I know. But I also know how far “fine” is from “exquisite.” Because yes, my parents had been exquisite together. Nothing less than exquisite. And when she died, he wanted her back. “However she is,” he told me, “I want her back.” I didn’t wish her back into the empty shell of Alzheimer’s, but to him, even that shell was always full of his love. Always exquisite.

If you know a caregiver, pray for him or her. If you are a caregiver, know that I pray for you.

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 For one will scarcely die for a righteous person—though perhaps for a good person one would dare even to die— but God shows his love for us in that while we were still sinners, Christ died for us.          (Rom. 5:7-8  ESV)

LORD Jesus, You call us “friends.” You gave Your life for us. In Your infinite kindness, please bless those who are giving their lives as caregivers to loved ones and friends. In Your name, we ask that You give them wisdom and strength, and please, Jesus, remind them they are never alone. Show them Your presence. May they feel You smiling on them, their loved ones, and their work. Thank you.

 

Words: A Matter of Timing

As valuable as words may be in maintaining a calm attitude in those with Alzheimer’s, words can also make a bad situation worse.

In the beginning, I was certain I could make everything ok for Mom: explain away her fears, talk her down from imaginary ledges, even spin reality to suit her mercurial moods. It was a matter, I reckoned,buddy-birdsof being kind instead of threatening and accommodating instead of bossy.

 

But, to put it succinctly, I was wrong. My explaining and talking and spinning did little to help Mom find peace once she’d lost it. On the day she responded to my encouraging talk by throwing a chair in my direction, I learned that persuasion was not a caregiving strategy I should rely on.

As in many issues related to caregiving, when it comes to using words, timing is all-important. For example, quiet small talk about familiar things could distract Mom while we sat in a doctor’s waiting room. But on a difficult day, if Mom said no to leaving for an appointment, trying to persuade her did more harm than good. My words were very likely to turn her flat refusal into an all-out battle. A physical one. Mom couldn’t throw that chair hard enough to hurt me, but she did persuade me to leave her alone about going to the doctor.bluebird-fight

Another example: Sometimes Mom would sleep late, get up without our help, and skip the bathroom stop that was so critical to getting a good start on the day. I would gently take her elbow to lead her to the bathroom, but on some days she simply refused to go. She planted her feet, jerked her arm away from me, and said “No” in a voice that threatened to wilt the leaves on the ivy plants in the window.

So I’d try a different approach. In dread of a loud, angry day, I became too determined to make Mom happy. I’d offer juice, toast, a bath robe to keep her warm. Maybe a cup of tea?

In effect, I was only increasing her anger. My words-words-words, though meant to accommodate her wishes, were actually putting more pressure on her. Her confusion expressed itself in still more anger. Often Mom left the room to sit alone on the couch. And I was left to contemplate my failure.

bossy-bird2It took a while to shut me up, but gradually, as all caregivers do, I learned from experience. I found that using words to keep Mom comfortable was usually effective. But using words to make Mom happy when she wasn’t? No. To talk her into doing something she didn’t want to do? No. To make her believe I was doing what was best for her? No. At those times, words were worse than ineffective; they were fuel for Mom’s flame.

The solution turned out to be simple: I did the opposite of talking. When Mom said no, I backed off. I waited. And then I tried again. Beyond checking on her every few minutes with a smile but few words, I left her alone. I prayed she would find the kind of comfort she most craved, and I would sense any of her unspoken needs. When I went back to her, I always brought up the troublesome subject as if it were the first time we’d talked about it. Sometimes it took a while, but, with few exceptions, Mom eventually agreed to what we needed to do.

Yes, a lot of time could pass while I waited for Mom. Still, even if it made us late to an appointment, waiting was my only option. I would never use physical force, unless she was in danger. I did learn to make appointments later in the day. And I didn’t hesitate to reschedule if that became necessary.

Two more pieces of advice from one caregiver to another: In time, I ceased worrying about other people so much—their schedules, what they might think about how Mom looked or acted. And I gave up trying to keep everyone happy. It was never a good idea in the first place.

soaringDoing what was necessary to keep Mom in her life as long as possible became my major goal. With that goal in mind, I did my best to put my fear and dread away. We tend to create what we focus on; I made myself focus on peace and expect the best.

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And the Word became flesh and dwelt among us, and we beheld His glory, the glory as of the only begotten of the Father, full of grace and truth.  (John 1:14  NKJV)

Father, we thank you for sending Your Word, Jesus, to redeem us. Through Him, we accept Your constant companionship. May we use Your grace and Your truth to help our loved ones through this earthly life until they behold Your glory their heavenly home.

The Choices We Make

Some decisions are harder to make than others. And usually the most difficult decisions must be made in the most stressful circumstances. No wonder we don’t always choose the best solutions to the agonizing challenges of Alzheimer’s.

Drawing a line in the sand in the beginning of the caregiving journey isn’t a good idea. It leads us to believe we have no options. The truth is, we always have options. 

My father was losing his sight due to macular degeneration, but he refused to let “strangers” come into their home to help him care for my mother. He also vowed never to put her in a care facility.

lonely beachHe justified the first decision by saying “I don’t want someone else in this house. I’d feel invaded.” In other words, that choice was motivated by his personal preference for privacy.

The second choice he justified on the basis of his experience with his own mother many years earlier. When my grandmother was bedridden as a result of a stroke, one or another of my father’s siblings arranged for her to live in what was then called “a nursing home.” My father visited her one time, with me and my sister. We wandered the halls and finally found her room by the sound of her crying “Help me help me help me.” We entered to see Grandmother lying naked on top of the bedclothes. Dad’s first reaction was a shout at me and my sister: “Get out!” As we scuttled out the door, we heard him cursing at all the nurses and doctors who were nowhere close enough to hear him.  Years later, I wasn’t surprised to hear his promise to keep Mom out of a care facility. She was better off at home with him, he said, just the two of them.

storm beachSo I stepped in to help care for Mom.  Someone had to.  Untrained, inexperienced, and, yes, frightened of what the future might look like, I spent most of my days at their home, returning to my family after dinner. As grueling as the schedule was, as difficult as the challenges became, Dad and I managed. But only with the help of God. He alone could have helped me come up with the practical ideas I came to call miracles. I tried out first one and then another and then another until the problem of the day—or the hour—was addressed. With His help, we not only survived, but Mom was able to enjoy pleasures we thought were long past.picnic beachStill…I should have pushed Dad harder to get professional help. A trained aide would have added greatly to Mom’s safety, especially with bathing and other issues of hygiene. I was surprised to see that, when Mom did have to be hospitalized for a broken hip, she gave the nurses much more cooperation than Dad and I had enjoyed.  Later, because she couldn’t do the rehab necessary to walk again, the doctors said she must go to a care facility after all. We feared she’d fight the caregivers there, engage in the long term shouting matches we had experienced at home, or refuse to eat, drink, take her medications.  None of that happened. Mom was calmer and seemed much more comfortable at Golden Acres than she had at home. Dad visited every day. He made lots of new friends among the “strangers” at the home, and was free to enjoy more activities both at home and away than he had in years.

oler men at beachSo Dad’s decision to reject outside help worked out ok. But in hindsight, I see that everyone—Mom, Dad, and I—would have been better off with the additional expertise of a professional. No less important, Dad and I would have benefitted greatly from some time away from caregiving.  Three or four hours a week in the beginning, three or so days a week as the disease progressed—having that kind of help would have allowed all of us to enjoy more of Mom’s last years.

In addition, I see that, because the doctor overruled Dad’s decision to keep Mom out of a care facility, her last weeks were comfortable for both of them. Someone else, not Dad or I, talked her into eating and taking her medications.  Someone else took care of her hygiene.  Which left Dad with the opportunity to just spend time with her. He could see for himself she was not upset to be away from him. He could see her needs were met. And he could see in her eyes that, even in a place strange to her, she still knew him.

beach lineMy point is that lines drawn in the sand at the beginning of a caregiving journey may be erased. Tides such as additional information, progression of the disease, or just clearer thinking can wash away the logic or emotions of early decisions. What’s important to remember is that we always have options. If we can’t see them, someone less involved often can.  

We have to believe. Believing we have choices helps us find them.

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Save me, O God! For the waters have come up to my neck. I sink in deep mire, Where there is no standing; I have come into deep waters….

Hear me, O Lord, for Your lovingkindness is good;
Turn to me according to the multitude of Your tender mercies.   (Ps. 69:1-2,16  NKJV)

Father, please give us wisdom to care for our loved ones. When we struggle to help them, let us seek Your guidance. Remind us that You are always with us, and Your desire is to give us and our loved ones abundant life. Thank You, Lord.

 

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.

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.

In the Beginning…. Umm, When was That?

One day — just “out of the blue,” Dad said — Mom wouldn’t drive. She told him she was afraid of the car. Dad answered her fear with, “WHAAAAT???!” Next day, she got in the car and drove across town to catch a sale at her favorite store. What? Oh, well. OK.surpriseAnother day, on returning home after a haircut, Mom announced that her hairdresser had called her a liar. She would never go back to Ima again. WHAAAAT???! Ima had been doing Mom’s hair for twenty years! What could have come between them? Apparently nothing. The next week Mom went in for her usual appointment. What? Oh, well. OK.surpriseThat’s how Alzheimer’s usually introduces itself. A loved one does or says something totally bizarre—something you can’t fail to notice because it’s so out of character or contrary to old routines. But before you have time to worry too much, everything goes back to normal. All is well…until some other strange behavior pops up, stays just long enough to get your attention, and then vanishes as if you only imagined it.

I don’t know when those random behaviors began with my mom. My father managed to keep them hidden from me and my sister for a long time. Maybe five years.

lots of surprisesHow was that possible? Looking back, I see four things that, I believe, helped Dad keep his secret:
— Alzheimer’s reveals itself more slowly in some people than in others.
— Mom always insisted on marching to her own drummer, so Dad, my sister, and I were likely to attribute some of her bizarre behavior to her already “difficult” personality.
— Even after Alzheimer’s had a choke-hold on Mom’s mind and personality, the appearance of a visitor could trigger something I called “company behavior.” When someone other than Dad was in the house, Mom was somehow able to pull forward old habits and behaviors. So, for a while at least, Mom was able to be her old self when my sister and I came to visit.
— And finally, as the illness grew worse, Dad went straight to denial. He refused to see her confusion growing worse, and remained certain Mom—and their life together—would return to normal.

Mom and Dad lived only fifteen or twenty minutes away, so I saw them often, but for only an hour or two at a time. And in those early years, with Dad’s help, Alzheimer’s could stay hidden for one or two hours.

So it wasn’t until I took Mom and Dad on a road trip that I saw how ill Mom had become. She was fine the first day, paranoid the first night, lost in the tiny motel room the next morning. By that afternoon, she was raging, fighting with me and Dad, out of control. That afternoon was the first time I had any suspicion Mom might have Alzheimer’s.

red surpriseWe’ve spoken before here about the advantages of getting an early diagnosis. There’s the chance you’ll find your loved one has something other than Alzheimer’s, perhaps something that could be treated; the chance that medication could slow the course of the disease; and the surety that once you can accurately name the problem, you can handle the present with more understanding and plan for the future with far more information about what it may hold for your loved one.

But if someone is hiding the symptoms from you, as my father hid Mom’s symptoms from me, early diagnosis becomes very difficult. With no symptoms evident, why would you even suspect a loved one might have Alzheimer’s?

questionsI have one suggestion. Looking back at my own experience, I know I should have questioned the changes in Dad’s behavior. With 20/20 hindsight, I can see all the evidence: some kind of major change was taking place in roles and activities my parents had cultivated through more than fifty years of marriage. Dad began answering the phone instead of Mom. He declined invitations for no reason, and often backed out of an event at the last minute. He began telling me all about the great frozen dinners he had found at the store, how delicious they were.

Dad asked me questions about doing laundry. I should have asked him questions about why he was doing the laundry.

Nobody wants to look for Alzheimer’s. But I urge you to be aware: the first signs that a loved one has Alzheimer’s may be the changed actions and habits of someone else in the household. Talking about what you see is better than hiding from it. Better for everyone.

“Don’t be afraid,” the prophet answered. “Those who are with us are more than those who are with them.” And Elisha prayed, “Open his eyes, LORD, so that he may see.”   (2 Kings 6:16-17 NIV)

Father, open our eyes to what we need to see. It’s hard to look at this dreadful disease, but if we want to help our loved ones, we must face the hard sights and ask the hard questions. In Your strength, we can do the hard things. Thank you for Your care for our loved ones, and for us.