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.

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.

 

 

 

 

 

 

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.

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.

Comfort in the Storm

For people with Alzheimer’s, comfort has much more to do with the mind than the body. If we can keep our loved ones with Alzheimer’s comfortable, we’re giving them a treasure.

My mom might have been sitting in her favorite spot on the couch, wearing her favorite loose black slacks and the multicolored blouse she’d worn four days in a row. Perhaps she had just eaten, or maybe she had a glass of orange juice on the table beside the couch. Almost surely she would be barefoot; shoes, in her opinion, were to be worn only when absolutely necessary. So was she comfortable?

surfer stormNot necessarily. Her body might have been satisfied, but, as with all of us, the state of her mind determined whether she was truly comfortable. While we can direct our thoughts away from imagined catastrophes and unreasonable fears, our loved ones with Alzheimer’s are at the mercy of whatever ideas or worries Alzheimer’s throws at them. We became accustomed to the signs of Mom’s unease. She shuffled her feet. She looked around as though trying to find the source of a noise she couldn’t identify. She would half-rise from her seat, then sit back down, only to rise again a few seconds later.

If we asked her if she needed something, she might answer through gritted teeth, or not at all. The discomfort caused by the goblins in her mind could inflame her anger, or it could reduce her to a silent form with panic in her eyes.

That kind of discomfort is hard to fight. But Dad and I tried, with encouraging success.

fighting fearThe first step was to identify, if at all possible, the source of her worry. Not always an easy task. Though certain scenarios did appear frequently, it was never something we could predict. It might be an unpaid bill, or neighbors who were angry, or people coming to the door who wouldn’t leave her alone.

In the beginning, we were stymied. Words were usually useless, but we couldn’t protect Mom from an unseen danger. At last, in a flash of understanding that could only have come from heaven, I found a way to convince her she was safe. We couldn’t see the danger, but we could produce a visible solution.

In the case of the unpaid bill, I could write a “check” in front of her, put it in an envelope, and put it out on the mailbox for the postman. When, very quickly thereafter, the envelope disappeared, Mom was sure it was on the way to the electric company. If she thought the neighbors were angry, I’d cut a rose or put cookies on a plate, go outside for a few minutes, and come back inside with a smile and an empty plate and the gracious greetings and thanks from the neighbors. With no dial tone on the phone, I called the police in front of her and let her hear me telling them about the people who wouldn’t leave her alone. When I hung up, I’d smile and tell her how grateful the police were for the information. And guess what! They had already caught the culprits!

surfer after stormThe key was doing something visible to Mom to show her we took her seriously. Some people consider actions such as these lying to our loved ones. I believe just the opposite. I believe handling Mom’s fears in this way was more truthful to her reality, and showed more, not less, respect to her. Imagine how it would feel to tell the people you trust most in the world about something that makes you worried or afraid, and have them reply, “No, no, no. Don’t worry about that. It never happened. It’s just your imagination.” Not only are the words of no use, they seem cruel to me.

When someone has Alzheimer’s, it gives them their own reality. They gradually lose their understanding of what we call the real world. They can’t come to our reality, so we must go to theirs in order to calm their fears.

Not long ago, my cousin sent me a picture of her and her mom having lunch at a diner. Aunt Sylvia’s hard days far outnumber her good ones, and the good days aren’t as good as they used to be. But in the selfie my cousin took, just their two smiling faces, I could see in her eyes that Aunt Sylvia’s was comfortable. Her hair wasn’t the groomed style she always had; her face looked thin and worn. Still, she was with the one who takes faithful and loving care of her, and on this day, that was enough for her to feel secure. Even in unfamiliar surroundings, even in a wheelchair—Aunt Sylvia’s smile was relaxed.

Comfort. Not appearance, or the ability to recognize someone, or constant cooperation. Comfort is the treasure we try to give our loved ones.

  In the multitude of my anxieties within me, Your comforts delight my soul.  (Ps. 94:19 NKJV)

Lord, we ask for your inspiration and enlightenment as we care for our loved ones. Help us, please, to understand what they want and need. We know You can comfort them even when we cannot. Thank you for Your loving care for them.

No Time to Hide

Family members and caregivers who attempt to deny the signs of Alzheimer’s in a loved one will inevitably discover the cruel truth: hiding from Alzheimer’s doesn’t work. hide-and-seek-gameAlzheimer’s always wins the game of Hide (the symptoms) and Seek (to keep living as though nothing is wrong).

Why would we try to keep our loved one’s illness a secret?

Denial—it’s the first step in the grieving process: deny the reality of an event or situation that we simply find too painful to face. Because we know the magnitude of the changes Alzheimer’s will bring, not only to the person affected but also to everyone close to that person, many of us try to overlook symptoms for as long as we can. Even when we’re finally unable to ignore them, we can steadfastly refuse to consider Alzheimer’s. “It’s stress,” we tell ourselves. “Fatigue. Maybe old age.”

For months, neither my father nor I would even say the word “Alzheimer’s.” Not to each other; certainly not to anyone else. And as long as the doctor didn’t say it, we reasoned, we didn’t have to believe it.

under the couch

When the doctor did finally make the diagnosis, it came almost as a relief to us. Hiding from reality is exhausting.

Even then we kept Mom’s illness a secret. Why? Embarrassment. When I was a child, Dad had watched my grandfather die a slow and difficult death, from what people at that time described as “senility”—in my grandfather’s case, a particularly ugly form of senility. But when Mom’s doctor looked at her medical history, he told us Granddad probably suffered from Alzheimer’s.  That’s when Dad vowed he would never let anyone know Mom was sick “that way.” Yes, eventually he did tell people she had Alzheimer’s, but only after months of making excuses and inventing far-fetched stories to explain her behavior or her absence from family gatherings.

There was a time when many people felt as Dad did. Spouses and family were ashamed of the changes the disease wrought in their loved ones. Even today, when it seems almost everyone knows someone affected by Alzheimer’s, many families opt to stay “in hiding” rather than take their loved one out of the house. A patient who refuses to bathe or tend to other matters of personal hygiene is difficult to live with at home; in public, the sights and smells that accompany Alzheimer’s can be humiliating. Erratic or hostile behavior can be frustrating at home, but it’s even more difficult to manage in public. At home, sudden mood changes charge the atmosphere with tension; in public, such changes can be frightening.

under the deskBut we repeat: hiding Alzheimer’s—or hiding from it—doesn’t work. Efforts to deny it will end in defeat. Attempts to keep it under cover are sure to fail. Alzheimer’s symptoms and behaviors will not be ignored.

And, of course, they shouldn’t be! Because maybe it isn’t Alzheimer’s. Maybe it’s a different, treatable disease. No matter what the cause of symptoms, delaying a diagnosis out of fear is always a mistake.

If it is Alzheimer’s, hiding won’t get our loved ones the help they need. They need all the relief medical science and family and community can offer. They need us to be alert for the times and situations that make life even more difficult for them. We ourselves need support, physical and emotional, from friends, extended family, counselors, physicians, professional caregivers.

open your eyesAlzheimer’s isn’t pretty. It’s not amusing, not interesting, not easy to look at,
even from a distance.

But those who have the disease are still here with us. To see them, we must look at Alzheimer’s—or, more accurately, look through Alzheimer’s. Yes, as time passes, it gets more difficult, but if we keep our eyes open, we will reap the rewards, for ourselves and our loved ones. We can claim every good day—or hour, or minute—for them; every easy smile; every instance when our love and service overcome their fear and confusion.alzh sttrongFor God has not given us a spirit of fear, but of power and of love and of a sound mind.   (2Tim:1:7   NKJV)

Almighty Savior, You have told us we need never fear. Remind us, please, that You are our Protector in all things at all times. May we hide in You, using Your strength and care to serve those we love. Thank You, Jesus.

‘Tis the Season

Holidays—Christmas, in particular—are the source of many of our sweetest memories. But in a house where Alzheimer’s lives, can Christmas bring any more happy memories?

Absolutely.Yes, our celebrations will change, in small ways or large, because of Alzheimer’s. But the love of family and friends will not change. And love is the most important ingredient in our sweetest memories.

goodiesAs we look forward to holiday gatherings, it’s important for caregivers to know where our focus should be: Our goal is to make those we care for comfortable.

Of course, it would be nice to see our loved ones looking and acting happy. Nice, but not necessary. Comfort is necessary. Comfort is what will keep our loved ones with us, participating as best they can in the pleasures unique to Christmas-time.

Here are a few suggestions for making an Alzheimer’s patient comfortable at holiday gatherings:

Plan small gatherings. A crowded room with lots of people talking at once can make someone with Alzheimer’s very anxious. So consider entertaining just a few family members and close friends. There’s a chance your loved one will surprise you by remembering some of your guests—by face or voice, if not by name. But it’s virtually certain he will be unsettled, maybe extremely so, if he’s in a crowd.

b&w gatheringIf possible, hold the party at the place where your loved one lives. Those are the surroundings most familiar to him, so he should be more comfortable there than anywhere else. In addition, if he would rather not participate or if he gets tired, he’ll be able to retreat to another room, close by, where you can watch and care for him without leaving the party. If it’s not possible to have the party where your loved one lives, be sure you have a plan in place in case he insists on leaving.

Be prepared to stay close by your loved one and bring an extra store of patience. There will probably be lots of questions—about the decorations, the food, the music, the people, everything.

b&w decoratingTry not to talk around your loved one with Alzheimer’s. Include him in conversations in any way possible. Even if he can’t or won’t speak, you can acknowledge him with direct eye contact, perhaps a smile or a nod. And if he does decide to get in on the discussion, let him. If his words might make no sense, it doesn’t matter. He’s participating! What if you think he’s talking too long? Just handle it the same way you handle his conversations with the pharmacist or the cashier or the neighbor who comes for a visit.

Make sure there’s something at the party your loved one likes to eat. REALLY likes. Obviously, having him eat something nutritious before the party would be best; still, he may want to eat again if he sees others snacking. Of course you should also be prepared for him to reject whatever you offer. Remember: the focus is on comfort.b&w dinnerConsider bringing out old photos. Even if your loved one looks at some of them every day, chances are they will provide an opportunity for him to interact with your guests.

Music sometimes helps those with Alzheimer’s to relax, especially their musical favorites from the past. Christmas carols may bring a smile to your loved one’s face; he might even hum or sing along. Just remember to keep it soft. Loud music won’t help. Even Christmas music isn’t good if it’s too loud.

christmas carolsWhat about gifts? If there’s something you know your loved one enjoys (family pictures, coins to count, puzzles, towels to fold, etc.) go for it! The gift needn’t be new; the idea is simply to have something for him to unwrap. But—another reminder of how few things are predictable in a life lived with Alzheimer’s—don’t be offended if he doesn’t like or even unwrap anything you give, no matter how “perfect” you think it is.

Relax. You have invited family and close friends. These are people you know well, people who understand the challenges you face every day. Trust your guests to understand.b&w friendsLook for miracles. They happen every day in the life of an Alzheimer’s patient, so watch for them—expect them—here also. Small things, like a smile, or bigger ones, like wanting to dance or sing, wanting to talk to people, enjoying a gift. And even if your loved one’s reactions are not all that you hope for, you will have kept him present in an important family gathering, present in his life.

Finally, remember to do all you can to enjoy your Christmas season, also. You need some free time. Get help—day care or home care from a volunteer or professional. Perhaps you’ll go out for coffee with a friend. Or bake. Or walk through the mall to enjoy the decorations. Or maybe you’ll take the opportunity to sit quietly and ponder the blessings that flowed from the manger of that cold stable, a manger filled with scratchy straw on which lay a King.Babe in mangerDear caregivers, you will pour out your lives with love on Christmas Day, as you do every day, for those you care for. Love makes memories, so do not doubt: you will make more good memories this Christmas. Lovely and sweet and lasting, they will comfort you in Christmases to come.

Sweet Lord, You came to be with us so that one day we might be with You. Help us, please, to see Your grace and truth. Help us to show Your love to those we care for in this season that celebrates Your birth.

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)

Making Assumptions

Making assumptions can be a good strategy for caregivers. Why? Because making an assumption will lead us to try something, take some kind of action that just might improve life for the ones we care for.

So many times in a day I was baffled by my mother’s actions. Or her words. Or the expression on her face. I could try to guess what she needed or wanted and come up with a lot of possibilities. But then I spent time trying to decide which possibility was the correct one. And as the clock ticked on, Mom either got upset because I wasn’t helping her, or she said—by word or action—“Never mind. Just forget it.”

meme-thinking-face-1920x1080My guessing game left us both unhappy.

But what if I had assumed? “Assume” carries the idea, not simply of guessing, but of acting on a guess. And where our loved ones who have Alzheimer’s are concerned, trying to do something for them is almost always better than standing around worrying about what they want.

good ideaA simple example:
Dad, Mom, and I walk into a large discount store. She’s pushing a shopping cart and I’m right beside her. Dad goes ahead of us with his own cart.

Usually Mom and I sit for a while in the coffee shop while Dad roams the store. So I gently steer the cart toward our regular table. Mom gives me an angry look. Asking her what’s wrong gets me no response. So I try again to turn the cart. This time Mom hisses, “No!” Before her temper is fully engaged, I stop to investigate. Her shoe isn’t untied. She’s not trying to sit down. Her hands aren’t in her pocket searching for a tissue. She’s just staring straight ahead. So I look that direction—and see a large display of poinsettias. They’ve arrived just in time for Thanksgiving.

And I assume that’s what Mom wants to see. Rather than ask her, I simply steer the cart in the direction of the flowers.time for action

The closer we get, the bigger Mom’s smile grows. We walk around and around the large display, circling the blooms of red and pink and green and cream, some glitter-sprinkled, and all stretching their graceful necks above gold and silver foil collars.

After Mom’s admired and sniffed and pointed for a few minutes, I see her shoulders start to droop and assume she’s getting tired. So I start talking about our favorite table and the hot coffee we can enjoy there. And soon we’re there, sipping our coffee, Mom pointing toward the flowers again, me talking about each color, the three sizes of pots, and gold and silver ribbons.

I could have asked, of course. “Mama, do you want to see the flowers?” In the absence of a reply, I’d likely have gone on, “Or do you want to look at the popcorn tins? Or walk down the produce aisle? Or go find Daddy? Or….”

pls stand byBut on that day as on most days, Mom either couldn’t or wouldn’t have answered. The frown on her face would grow deeper with each question. So, knowing that almost any pleasant action is better than another question, I made an assumption and started moving. If I had found my assumption was false, I could have made a different one and moved in a different direction.

There are, of course, two other possibilities to consider:

Maybe Mom didn’t know what she wanted; maybe her reactions had more to do with a difficult mood than a specific desire. In that case, steering with my shoulder and my body, I’d have led her over to sit down or outside to wait in the car.

Or perhaps I had no idea what Mom wanted to do. What then? Well, I could still try all the likeliest possibilities, and sooner or later the activity would tire her and we’d just sit and wait for Dad.

The thing to remember is that making an assumption leads to some kind of action. For the caregiver, doing something feels better than standing around wondering. And for those with Alzheimer’s, our actions, even trial-and-error actions, are easier than questions. Even if what we end up doing isn’t what our loved ones had in mind, all our attention is focused on them. We’re touching them, talking to them, smiling at them. In Mom’s case, all of those gentle realities were less threatening to her than a question she couldn’t answer.

forwardFor me, doing something was progress. Finding out Mom would eat cranberries when nothing else pleased her, seeing that sometimes she wanted me to help with the left shoe first instead of the right—making discoveries like those helped me to see that I wasn’t just watching and waiting with her. I was helping her live a life, her life, in spite of Alzheimer’s.

He will feed His flock like a shepherd; He will gather the lambs with His arm, And carry them in His bosom…. Isaiah 40:11 (NKJV)

Lord, we ask you to guide our actions with our loved ones. Show us the possibilities, the opportunities we have to help them continue to live here on earth until You show them the infinite beauty of life with You.
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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.