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.

Christmas Every Day

Why can’t every day be like Christmas?

It can be. In fact, for caregivers, it already is.

duskIt’s hard to be a caregiver on any day. But I found it especially difficult during the Christmas season. It had to do with the things that change during the holidays. And the things that don’t.

One huge change: the gaiety is relentless. Wherever you go, everyone seems friendlier. Smiles seem more sincere. And greetings abound, from people you see in line at the grocery store, trudging through a crowded mall, hiking across a parking lot, sitting behind you on the bus.

And music—it’s constant: on the radio, on TV, in every store, even singing out from speakers nestled under the neighbor’s eaves. The newest tunes demand that we forget our pain and rejoice in all the merriest of ways, while the old songs open our hearts to the timeless themes of love and forgiveness.

starsThe scenery is another drastic change. Ribbons, red and green and gold and silver, hang from street signs and light poles. Real or artificial, evergreen is everywhere. Tiny lights shine up from the trunks of trees out to the smallest, highest branches. Lights march in straight lines around rooftops, drip into bright icicles, and fall in dazzling clusters. The lawns that in summer craved water and shade now turn into snowy scenes of Santa’s workshop or lush forests filled with glittering rabbits and deer.

even brighterOr, sweetest of all, maybe Bethlehem rises from the grass, with a stable where Mary and Joseph, shepherds and kings, angels and animals stand or kneel as if frozen, gazing in awe at the Baby sleeping in the manger.

Yet…in many houses, it appears nothing has changed. Just as it did in spring and summer and fall, illness works to darken the rooms. It tries to still the music. It threatens to silence the greetings and dim the smiles.

one starCaregiving becomes even harder, it seems. We do our best to savor the holy holiday, while our loved ones with Alzheimer’s remain largely unaware.

But think about it. Isn’t this the battle we caregivers face daily? We fight to brighten every day. We struggle to hold on to beauty whenever and wherever we can find it—in music, nature, laughter, smiles, companionship. We offer those gifts every day to our loved ones. We try to help them see and hear and feel the joy of being alive. We do our best to keep life from slipping out of their hands.

And we do it with the help of the Babe in the manger. He himself told us his very reason for coming was to bring us life, “abundant life,” and He promised to be with us always.

Which brings us to an amazing conclusion. A sweet and undeniable truth:

For caregivers and their loved ones, every day is indeed Christmas.

With the help of a King who gave Himself so that we might truly live, we give the best of ourselves to bring more life to those we love. Every day. That’s what caregivers do. And that’s Christmas.

christmasI pray your holidays bring you a rebirth of love and strength and joy.

  I have come that they may have life, and that they may have it more abundantly.” (John 10:10  NIV)

Sweet Jesus, thank You for coming to us. Thank you for helping us celebrate Your birth. Please make us humble like You, and strong like You, and loving like You. Be with us as we do our best to serve You by serving each other, every day.

‘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.
.

Isolation

Once Mom got Alzheimer’s, my father let very few people into his house: only me, my sister, our families, and one of his brothers. When neighbors dropped by, instead of inviting them inside, he went outside to talk to them…and always shut the door. If friends or family phoned to find out when they could come for a visit, he put them off with lists of non-existent doctors’ appointments. He kept the windows on the front of the house covered; if someone tried to visit without calling first, he simply didn’t answer the door.

Dad thought he was protecting himself, and me. He called it privacy. I called it isolation.

lone two treesSurely not every caregiver is as extreme as my father. Still, it’s important to realize that Alzheimer’s isolates its victims and those who care for them. While those with Alzheimer’s gradually lose awareness of being isolated from the life they once lived, caregivers can see and feel their own lives disappearing.

The isolation caregivers experience has two faces. The public face leads some to make a conscious decision to keep others from knowing the reality of living with Alzheimer’s. Why?

Embarrassment is part of the reason. Caregivers are acutely aware of what visitors would be walking into. People with Alzheimer’s eventually care nothing about personal hygiene. Their former selves have been lost to extreme confusion, unpredictable moods, frequent anger, harsh language. And although caregivers spend their minutes and hours and days trying to maintain a clean and pleasant environment for their loved ones, they know walking into a home where Alzheimer’s lives can be difficult.

The other face of caregiver isolation is more private. The environment where a caregiver spends most of her time can be stifling. Caregivers’ lives can be reduced to the basics: simply getting themselves and those they care for from one day to the next. Alzheimer’s dominates not just activities, but thoughts, plans, even dreams.

BUT…

burnoutIsolation breeds burn-out. It threatens both mental and physical health. If you’re a caregiver, you must fight it. Isolation is like a room with no source of fresh air: it can suffocate you.

The way out of that airless room? It’s letting people in. Let people in. Let them see and hear what you face each day. They may have stopped asking “How is your mom?” because they know Alzheimer’s doesn’t get better, only worse. But let them ask how YOU are. Let them SEE how you are. Some who come in will leave as quickly as possible. But others will stay for a while. And later they’ll come back again. And again.

4 treesTheir presence will bring you oxygen. The fresh air of new perspectives. Ideas you might not have thought of. New faces—faces that might replace yours occasionally, so you can stretch your arms for a while and wrap them around the life you feared you’d left behind.

Some people have probably already offered their company—neighbors and friends and other family members. Even if they feel unprepared to assist with caregiving, you can assure them that their company is the help you need.

And here’s an idea: you can find even more oxygen if you ask for it. You are not serving your loved one by suffering in silence. Asking for what you need, however, improves your mental, emotional, and physical health. And that makes you a better caregiver.

We caregivers may feel obligated to spare others the burdens Alzheimer’s brings. Many of us believe we should be able to do it all; asking for help may seem like a sign of weakness. I speak with respect and gentleness, but I say it plainly because it’s so important, for the one you care for, but especially for you:

We should be able to do it alone? Asking for help is a sign of weakness? That’s not true. It’s pride.

We are made for community.a ring of treesOur minds and spirits are wired for it. That’s part of the reason that the people around you offer to help. Everyone will benefit. Let them.

For he will deliver the needy who cry out, the afflicted who have no one to help.         (Ps. 72:12 NIV)

We thank You, Lord, that because we are made in your likeness, we care for each other. You made us to help each other, to share burdens as well as blessings. Keep us aware, please, that we are never alone.

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.

Beached — The Unpredictable Days

Trying to plan a day with an Alzheimer’s patient is a little like building a sandcastle: you know the look you’re going for, but the castle rarely comes out as you planned.

Lots of conditions influence the outcome: where you begin, whether you’re working alone, your allotment of patience on this day, and, of course, the sand itself. Is today a day the sand wants to cooperate with your plans for it?

Okay—that last one kind of breaks down the comparison, but I promise you: some days on the beach are sandcastle days for me; some are not. I can’t say for sure what makes the difference, but I usually blame it on the sand.

empty sand pail

Trying to map out in detail a day with my mom is an exercise I learned to avoid whenever possible. Alzheimer’s has a way of shutting down plans, even well-made, long-held plans. I found it worked better for all of us—Mom, Dad, me—if we let each day take its own course. What did that look like?

Sometimes Mom awoke early, sometimes she slept till lunchtime. When she did get out of bed, some days she’d cooperate with the necessities of hygiene, some days not. This particular variable served as a barometer of sorts: if Mom let us help her get clean and dry, the day always seemed to go more smoothly; if she insisted on sitting in wet clothes and eating with unwashed hands, her mood tended to go downhill. Ours did, too.
But we didn’t give up on downhill days. We knew we could turn them around; we had a strategy that worked almost every time. We’ve discussed it in a previous post, but here it is in a nutshell.

If Mom refused a cup of tea, help with the bathroom, a piece of toast, her favorite shirt—we learned to simply leave her alone. Sitting on “her” couch in the den, she could see and hear me and Dad at the breakfast table, and of course we could see and hear her. Dad and I would talk quietly to each other, while Mom stared at the wall opposite the couch, shuffling her feet, sometimes talking to the dog. After twenty minutes or so, either Dad or I would try again to help Mom start her day. If she refused, we’d wait a while and offer yet again. The most important part of our strategy was that, each time, we spoke to her in a cheerful voice and made our offer as if it were the very first time.

Sooner or later, Mom’s answer changed. Did her mood change? Her mind change? Did she feel better? We never figured it out. We knew only that her answer changed. And the day started moving again. Thank the Lord.

sand fortressAs the hours passed, some of the activities we hoped would take place that day came to fruition. Others didn’t. Maybe Mom let me give her a bath. Maybe we went to the store. Maybe we got Mom outside for a while. Maybe it was a good day for conversation. Or maybe not. It was usually fine either way.

As far as we possibly could, we left the days open. There were almost no must’s, no time constraints, no deadlines. No firm plans. We put the day together as we went along.

Unless Mom had a doctor’s appointment.

Early on, doctor days were panic days. What if Mom refused to bathe? What if she insisted on wearing the same clothes she wore the day before? What if we were late? Worst of all, what if she simply wouldn’t go?

“I’m staying right here,” she said sometimes. And she’d stomp one foot on the floor for emphasis.

wrecked castleEven on those days, we managed to get Mom to the doctor’s office. But it seemed to get more difficult and nerve-racking every time.

Until I wised up. After months of trying to plan everything perfectly—hygiene, clothes, timing—I realized my plans seldom worked perfectly. Yet…Mom always made it to the doctor. Wasn’t that success?

We accomplished the most important thing: the doctor saw Mom.

That realization led to changes on doctor-days. First, I learned to make the appointments later in the day; that gave us more time to work through—or wait through—the issues du jour. And I let go of my pride. Yes, I helped Mom stay as clean as possible, but if she wouldn’t bathe before her appointment, so be it. If her clothes were less than perfect, okay. When her appearance was less than presentable, I told myself, the doctor was actually getting a more accurate picture of her daily condition.

The only “necessity” was to get Mom there, where the doctor could see and take care of her.

mound castleDialing down my anxiety on doctor-days seemed to reduce Mom’s also. I wasn’t rushing her. Instead of insisting she bathe, I just encouraged it, and was glad when I was successful.; I laid her clothes out on the bed and helped her choose what to wear. If yesterday’s outfit was presentable, it was included among the choices.

The point is that once I relaxed—understanding that, at worst, we might have to reschedule an appointment—things grew more peaceful. Not just on doctor-days but every day. I could turn a blind eye to Mom pouring orange juice on her potato chips. I could clean upholstery with the strong stuff, the disinfecting stuff. We could buy more green knit pants to replace her old favorites that suddenly disappeared. (We never found them, but after about five washings, Mom accepted the new ones.)

In other words, all any of us had to handle was the present, today. And as far as we possibly could, we avoided turning anything into a crisis.

I’m happy to say that, every now and then, we ended up with a perfect castle of a day. We usually couldn’t determine quite how it turned out so lovely, but we were smart enough to enjoy it, to live in it while we could before the sea erased it.

washing away
Besides, even without a plan, we’d have a chance to start another castle tomorrow. A chance to be surprised by how the sandy building would look at the end of the day. A castle? A fortress? A lopsided hut? Only the Lord knew. We learned the outcome was never in our control to begin with; it had always been in His hands. He worked each day out with a love for Mom that far surpassed our own.

Now may the God of peace…equip you with everything good for doing his will, and may he work in us what is pleasing to him, through Jesus Christ…. (Hebrews 13:20,21 NIV)

Sweet Jesus, help us to rely on You, to relax in You. Make us always aware of Your hands working with ours to care for those we love. Remind us to turn to You for the guidance and assistance You long to give us.