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.

 

 

 

 

 

 

The High Places

You’re going on a journey through Alzheimer’s. Or rather, you’re helping a loved one navigate the journey. No one recommended this trek to you; in fact, people tell you they’re sorry you and your loved one have to make the trip. But here you are.IMG_2394

As you start out, the terrain looks tough but not impossible. The trail is faint, though, and you wish you had a map. You tried to purchase one, but people told you maps of this territory are sketchy at best. It’s a different trip, they say, for everyone who makes it. So you pray for guidance and start walking.

In the beginning, things go relatively well. Your loved one moves slowly, but the two of you talk about what you see around you. You have plenty of food and water and stop now and then to refresh yourselves.

Before long, though, you find the stops are more frequent and they last longer. The trail is getting narrower, brushier, rockier. For your loved one, it’s slow going. So you extend your hand to steady her, and you pray it gets easier. It doesn’t, but you have to keep moving forward.

IMG_2406As you walk, the truth slowly dawns: this land is wild, but it has its own beauty. You listen and hear birds singing. Your loved one stops and smiles as one flits across your path. You point up at the sky and she lifts her face, admiring, you hope, the colors of the layered clouds: off-white, light gray, dark gray. Only clouds overhead, but they’re easy on her eyes and she stares so long, she sways a little and you take her arm.

The trail continues upward. It’s easier to see it now as it runs alongside a little stream. Tripping lightly down from the heights you’re trying to reach, the water sings as it goes. You wish you felt like singing, but your own breath is running short and your loved one stops again, and again, and again. You find logs for her to sit on, or rocks.

IMG_2393You sit beside her; you breathe together. It’s hard in this thin air, harder for her than for you. But looking around, you see that life has been hard up here. The old skeletons, deformed and bent, wounded by the work of living, litter the landscape with broken white  bones.

Yet, even with the steep incline that makes traveling across it so difficult, the land has rewards for those willing to search for its beauty. Wildflowers wave on tall stems or cuddle against tree trunks or stretch fragile roots toward the streams. Some thrive in the austerity of a boulder field. All become more diminutive as the trail climbs higher.

IMG_2434It’s a gift, you understand, this ability to keep your eyes open to the magnificence of small, beautiful things dwelling in a harsh environment. Each new discovery gives you hope and keeps you looking for the loveliness hidden among sharp rocks and fallen trees.

IMG_2402You continue up. Your loved one is tired, but she’s been called, so you keep going. The trail becomes cruel; each steep rise leads to another, even steeper. You cry silent tears while you put your loved one’s feet on the steadiest rocks and lift her step by step.

You know you’ve been called, too. This trip is ordained. For your loved one, the destination will be freedom, new life. And for you the joy is simply helping her get there. The thought of her traveling this road alone is unbearable. Even now you wonder if she’s really still “with” you. Her face is pale as the clouds; her eyes are glazed like a frozen pond; if she speaks, her words are as sharp as the rocks sliding under your feet.IMG_2404

At last you near the top. But the scene you expected to be lovely and life-giving is stunningly cold and barren. With one arm around your loved one’s back and the other holding her arm, you crane your neck to see beyond the rocky trail and the bare mountaintops. You keep looking, believing: It’s there. Keep going. It’s there.

A few more steps, over the last rise and then down, you’re startled by the sudden beauty of your loved one’s smile. Following her gaze, you too behold at last the beauty of the heights.

IMG_2428A lake, regal in its stillness, is before you.

Water, life, drop by drop, has been collected by the wind-swept mountainsides. Held in an ancient cup formed by primordial fire and ice, the water is green, like fresh ferns and newborn seedlings and spring leaves. An island of rock thrusts its primal shoulder up from the depths; trees, even greener than the water, grow in the steep stone soil.

islandYou’ve made it. You can rest now. Your loved one is safe on the summit of redemption. She has beheld the ancient glories at last. She is new. She’s reborn.

Stay awhile. Reflect on the trip. Did you take the shortest path? Perhaps so, perhaps not. Did you show your loved one every wonder she might have seen? Only the Lord knows.

But think about these things, too, as you gaze on the lake of new life: When your loved one was unsteady, you were there to hold her up. When she was afraid, you were there to keep her safe. When she was lost in confusion and chaos, you found her and led her back. You showed her wildflowers. Birds. Streams. And you smiled with her on the heights.

Makes every step worth it, yes?

For who is God, except the Lord? And who is a rock, except our God? God is my strength and power, And He makes my way perfect. He makes my feet like the feet of deer, And sets me on my high places (2 Sam 22:32-34 NKJV).

Father, you know the Alzheimer’s road. You know our loved ones are weak and confused and you know we’re weary. We rely on Your help every minute, every day. Show us the way, please, Father, and show us the beauty of the journey.

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.

Night Wandering

After last week’s post about ways to make bedtime easier, a reader asked whether my mother ever wandered at night. (Thank you, Kathy!)

Many people with Alzheimer’s wander, in the day or night or both. Those we care for may walk through the house, up and down halls, restless, as though looking for someone or something. Though that situation can be challenging, it’s far more problematic if the person you care for goes out of the house. The term “escape” is appropriate here. We’re not talking about taking a loved one for a walk—we’re talking about him leaving the house alone without our knowledge. And of course, doing that at night increases the danger exponentially.

My mother didn’t wander. I am fully aware of the magnitude of that blessing.

I have a friend whose mom tried to go out the front door virtually every night. In sheer desperation, her husband, my friend’s father, nailed boards across the door. Finally, one night her mom got a hammer and tried to pull the boards down. Though my friend and her dad managed to take the hammer away, it’s a miracle no one was hurt in the incident.

An extreme case, and a dangerous attempt to keep a loved one safe, and an example to confirm yet again that caregivers always need our prayers. 

There are better ways to approach the problem of wandering. Below I’ve gathered some strategies that worked for other caregivers.

Bob De Marco of the Alzheimer’s Reading Room suggests that wandering sometimes occurs simply because a loved one is restless or hasn’t had enough exercise. Or she may no longer recognize her surroundings, feel lost, and try to find a familiar place.

So one obvious solution is to provide safe ways for your loved one to exercise during the day. The emphasis here is on “safe.”  If you haven’t already taken steps to eliminate obstacles from your living space, now is certainly the time. Throw rugs, electrical cords, even furniture with sharp corners that extend into the room can present problems for all elderly adults, especially those with an unsteady walk and a diminished awareness of their surroundings.

Taking your loved one outside to walk requires the same watchfulness, but it can combine the benefits of exercise and exposure to sunlight. Research has confirmed Bob DeMarco’s observation:

“I believe bright light makes a person who is deeply forgetful (DFP) more awake and alert. They tend to speak more and seem to be ‘more there.’ DFPs seem to have more personality and an improved mood when exposed to bright light daily.” 

You might have to be creative in the pursuit of exercise. Dad and I found that, although Mom refused to walk much at home, if we took her to the store with us, she was happy to walk up and down the aisles behind a shopping cart. The cart steadied her, and the sights, sounds, and smells of the grocery store appeared to be comforting to her.

Other caregivers have noted that “camouflaging” doors—painting or wallpapering doors to match the walls of the room—has made it more difficult for their loved ones to open the door and wander outside. But a caregiver posting on the Forum page of the Alzheimer’s organization in the UK (forum.alzheimers.org.uk/forum.php) described how his father would rise during the night and try to leave the house. When he couldn’t open the door, he would pound on it with his cane. Twice he hit the reinforced double-paned glass in the door hard enough to break it. In this case, other caregivers responded that they were alerted to their loved ones’ rising at night by an alarm system designed specifically for that purpose. The alarm, they explained, was triggered by means of a mat beside the bed or on the mattress of the bed.

The Alzheimer’s Association Help Line will have other suggestions for handling the problem of keeping your loved one from wandering outside. They will also help you register him in a national database that will keep a record of your contact information so that authorities can notify you in case of an emergency.

Short of staying awake all night to watch the person you’re caring for, or hiring someone to do that, none of these methods, I fear, can guarantee success. But many caregivers have told me that, as Alzheimer’s advances, night-time wandering becomes less and less of a problem. As with so many facts associated with this terrible disease, that bit of information is bittersweet at best.

Lord, the task of caregiving is lonely, painful, and often cruel. In the worst of times, we beg You to remind us that we have seen our loved ones smile and we will see it again. Assure us that, even when they no longer recognize us, we’ll see relief on their faces because we’re there for them. We’ll know—You will make us aware of—their thanks and love. Thank You for caring for them always. Thank You for caring for us, too.

I will lie down and sleep in peace, for you alone, O Lord, make me dwell in safety.

(Psalm 4:8   NIV)