Staying in Touch

I wish I could say I never left Mom out in the cold in a social setting, but I know I did.

If there was anyone around other than the two of us, I talked to that person. I talked around Mom. Not intentionally, but, I guess, out of instinct. Aware that Mom struggled with words, I simply let the conversation take the path of least resistance.

That path usually avoids Alzheimer’s.

Thank goodness, I saw what I was doing pretty early on in Mom’s illness. On a typical caregiving day, Mom and Dad and I sat together at the kitchen table. As I talked to Dad, I noticed I was having to crane my neck to see around Mom’s head. She was craning her neck also, trying to look straight at Dad. Clearly, she wanted to be included.

Of course Dad and I had surely been challenged many times already that day, trying to get her to understand the daily necessities: getting dressed, eating a meal, taking medication. If you live with someone with Alzheimer’s, you know – the communication problems are not solved once a day; they’re addressed all day.

I’m sure, for example, we had answered Mom’s question “What are these things?” in a plethora of ways.

“Shoes, Mom. I’ll help you—“

“Your pills, Mom. And this is water—“

“Nail clippers! It’s beauty shop day!”

“Napkins, Mom. I know you like to have extras—“

And that was just one question. So perhaps Dad and I could be excused for talking around Mom sometimes.

But I soon saw that we did it most of the time, assuming Mom either couldn’t participate in the discussion or didn’t care. Yet, even if our assumptions were correct at times, at least  trying to hold Mom’s attention was still the better choice. If we ignored her too long, she got restless, shuffling her feet or tapping her hands on the table. Sometimes she got up and left the room, almost always a very bad arrangement.

Once I saw the problem, I also found a pretty simple solution: maintain eye contact with Mom. Not constant, but at close intervals, whether I was talking to her or not.

At first Dad didn’t understand when I’d look at Mom instead of him as I answered his questions. “What’s wrong with your mother? Is there a problem?”

But once I explained what I was doing—a couple of times—Dad got it.

Or maybe it wasn’t so much my explanation that sold him as it was Mom’s reaction when he caught her eye.

“How doin’, Honey?” he’d suddenly boom across the table to Mom.

Sometimes he got the answer he expected: “Fine, Daddy.” Sometimes she just looked at him and smiled.  Sometimes she looked in the direction of his voice, and sometimes she didn’t look at all.

Regardless of her response, Dad grew fond of fixing her in his gaze. Such was their love that I imagine he was thinking, “She’s still here. She’s mine. I can see her and touch her. She can see me and touch me. I can tell her I love her, and whether she says it or not, I know she loves me.” Those are the words I read in his cloudy, sky-blue eyes as he looked across a wide, wide gulf at the one and only love of his life.

Holding the attention of our loved ones isn’t always possible. But often the miracle is there to see and experience, if only we will claim it. Long after they forget to turn to us, we can communicate with them. With words, yes, but also with touch and music and loving looks. It takes determination to keep trying. But the miracles and victories stack up and strengthen us.

“I will help both of you speak and will teach you what to do  (Exodus 4:15  NIV).”

Father, all good things come from Your hands. Patience, courage, strength, solutions to challenges. Please teach us to keep our minds always aware of Your presence, Your help, Your miracles.

Can We Talk?

                One of the first things I learned about Alzheimer’s was that keeping Mom alert and engaged with those around her, even if only by means of eye contact, was a very good thing.

Mom seemed to drift further away from us when she was on her own. If she spent much time staring out the window or sitting alone in a room or dozing, she was often angry and loud, or she refused to speak and interact at all.

                Talking to Mom was one of the best defenses against that kind of disconnect. It almost didn’t matter what subject I chose, as long as I kept eye contact. I believe that made her feel included, even when she wasn’t speaking.

Eventually, yes, Alzheimer’s took away her ability to jump into a conversation, but on her best days, she could still adapt. Her first and favorite strategy, I noticed, was to decide that something – and it might be anything – was new. 

Sitting at the table in the late afternoon or evening, Mom would watch Dad and me discussing the news or his garden or what I planned for dinner.  As she raised her eyebrows higher and higher, it appeared to me she was searching for a way to join the conversation.

 Finally, “I’m talking to you,” she might say, turning to me. 

No more words yet.  I waited.  In a moment or two she’d continue.  “I see your blouse.  Is it new?” 

Probably it was an old sweatshirt I’d worn because I planned to do some cleaning.  Maybe it was stretched out and holey.  But a good day was a good day and on a good day, even a worn-out sweatshirt could be a pretty blouse.  And not just that.  Also a blessing.  A miracle.

So I’d smile at her as I answered.  “Thank you, Mama! I’ve had this for a long time.” 

“Oh,” she would breathe and then, running short on words, she’d smile and smile and shuffle her feet back and forth beneath her chair until I rescued her by asking, “Do you like it?” 

“Oh, yes, child.” Armed now with more words, Mom would look across the table to my father.  “Do you like that blouse, Daddy?”  Then, turning back to me, “Is it new?”

Since just about anything could be new to Mom on any given day, there were lots of “new” conversations. 

When Dad put a rail on the back porch steps, Mom seldom failed to mention it as she went up or down.  “Your father made this for me.  It’s new.”

The rose garden Dad and I planted was perennially new, not from season to season or week to week, but from day to day, hour to hour, whenever Mom chanced to recognize it.

For a while, even my husband’s hair was new.  It had turned gray when he was only about 40, and Mom always loved the silvery color.  But one day his hair was brand new to her.  She couldn’t tell him often enough how much she liked it. 

Again and again she said, “I like your hair, Harold.  Is that a new color?”

And Harold grinned and said, “Yes, ma’am.Your daughter gave it to me.” Mom didn’t get the joke, of course, but Harold laughed, so she laughed, and then we all laughed. A few minutes later, as she was rocking a bit and looking for a way into the conversation again, she seized on Harold’s hair again. We laughed every time.

Perhaps some tiny but well-used connection remained in her brain for a while after so many other connections had snapped or been smothered and died. Maybe that tiny connection told her that noticing something new and complimenting someone about it was a good thing to do and smiles resulted. Maybe she remembered, or maybe not.

Regardless, it was a miracle.

New miracles every day. We must watch for them. We can learn from them.

For example, I finally realized I should speak to Mom as she spoke to me. Not only using simple words and short sentences, but even choosing the subjects she chose. As tired as Dad and I became of hearing the same new questions and giving the same new answers again and again, I began to initiate the new conversations myself and let her respond. 

“Oh, look, Mama!  A surprise for us outside!  Roses!”

“What a pretty tablecloth this is!  Is it new?”

“Wow!  Shamrocks on your shoes!  I love them!”

Even if the pleasantness of the here and now had been discussed an hour ago and a day ago and many times before that, the miracle was that we could so often cheer Mom with it, even in the later years of her illness. We could remember what she had noticed and liked in the past and help her to notice it for the first time, again. We could trick the disease – make it work against itself. That was a sweet victory indeed.

“Forget the former things; do not dwell on the past.See, I am doing a new thing!Now it springs forth; do you not perceive it?I am making a way in the desert, and streams in the wasteland  (Is. 43:18-19  NIV).”

Our Father, all creativity is Yours. As we fight against Alzheimer’s every day, we will be faithful to watch for Your direction. We thank You for inspiring us with miraculous ways to help our loved ones.

Rescue from Confusion

Very early on, even before the better known symptoms of confusion and forgetfulness become noticeable, people with Alzheimer’s may begin withdrawing from interaction with others. They may back away from conversation and be more reserved in gatherings, even with family and friends.

I believe the withdrawal comes from fear. Especially in the early stages of the disease, I think people with Alzheimer’s are very aware something is wrong. In the middle of an ordinary situation, they don’t know what to do or say. They knew just a minute ago—they’re sure they knew—but now they’re lost. In a very familiar place among people they know well, they’re lost. Their natural reaction is to hide the confusion.

My mother would smile, nod, act as though she didn’t hear what was said to her, or say “You go right ahead. I’ll follow you.” She never asked for help, never admitted she was bewildered; instead, she backed as far away from the interaction as she could get. At this point in the disease her confusion was temporary; in an hour, maybe less, she might be engaged in the conversation and activity again.

This had been going on for months, maybe years, before Mom was diagnosed with Alzheimer’s. For a while I’m sure I didn’t even notice it. When I did notice, I ignored it because it always passed. But eventually the episodes lasted long enough for me to recognize a look that came into Mom’s eyes and a blank expression that came over her face. The look I recognized as fear, and the expression I interpreted as uncertainty. Put them together and they said “confusion.” Utter. Debilitating.Terrifying.

I look back and weep at the panic Mom must have felt, trying to hide it, fighting it alone.

The good news, and the bad, is that eventually the disease progressed to the point where Mom was no longer aware she was confused.

The miracle, however, is that long before that time came, I found ways to help her continue to enjoy interaction with others, whether it was me and Dad, just family, or a larger group.

  • In everyday conversation, I stopped asking Mom “Remember when…?”
  • I helped her answer questions by giving her choices: “The dress you wore to my wedding—did you make it or buy it?”
  • I accepted whatever answer she gave.
  • If I could tell she was confused, I didn’t ask questions at all. Instead, I looked directly at her and talked about whatever seemed to hold her attention. I think she was content because it appeared her part of the conversation was simply to be there. She could do that.
  • I put items on the table, usually only one or two at a time—magazines, photos, a flower in a vase, a bag of seeds—that I thought she could talk about. If she wanted to. If she didn’t, that was fine, too.
  • When other people were around, I watched Mom closely. If she appeared to need help, I’d move to her side, take her arm, and supply comments and answers she could agree with: “You planted those spider lilies a couple of years ago, right, Mom?” In my mind, the physical contact was like an anchor. If her reality suddenly disappeared, she wouldn’t float away with it.
  • Larger groups almost always made Mom uncomfortable, even before Alzheimer’s. After Alzheimer’s, we tried to avoid them entirely, because the paralyzing confusion was almost guaranteed to ambush her in that setting. On the rare occasions we did find ourselves in a crowd, I sat with her or walked with her, occasionally leaning over to whisper something funny in her ear. I smiled into her face, she got the cue to smile back, and all was well.

Helping Mom interact in her own ways without being embarrassed and afraid kept relationships alive in spite of Alzheimer’s. I think interaction, whether verbal or not, kept Mom present—not just alive, but living her life and maintaining her place in her world for as long as possible.

Have you found effective ways of keeping your loved one involved and in touch? Will you please contribute them here?

We all need all the help we can get, especially from those who know exactly what we’re facing. That’s us—each other—we’re the ones on the front lines. We know what works and what hurts. Let’s help each other, and ourselves, by sharing. Yes?

“Call to me and I will answer you and tell you great and unsearchable things you do not know (Jeremiah  33:3  NIV).”

Lord, just as we have committed ourselves to be with our loved ones, You have promised You will always be with us. Help us to see, Lord, that our presence as caregivers is one way You are present with us. Our sharing suggestions and strategies is one way You help us all to cope. Help us encourage our loved ones, Lord, and each other.

Family Talk

Alzheimer’s strikes us, victim and caregiver, at our most vulnerable points: our minds and our hearts. When a loved one has the disease, keeping family relationships as normal as possible becomes a huge goal. Being able to talk to each other, an important element in any relationship, gets more difficult with Alzheimer’s on the scene. But it’s not impossible.

Anti-depressant medication produced a bounty of positive changes in Mom’s life and, therefore, in mine. Though it did not prevent or even retard the progress of Alzheimer’s, the medication did much to relieve a condition Mom suffered from, I now believe, for most of her life. With the new medication Mom–even with Alzheimer’s–was a happier individual: more cheerful, less angry; more cooperative, less combative. She ate better, slept better, had more energy.

Without question the sweetest change was Mom’s willingness to enjoy time with Dad again. Her ability to join in a conversation was especially satisfying to him. Of course she couldn’t exchange views and express opinions as she once did, but after enduring long months of her angry silence, Dad was grateful Mom seemed to enjoy our talk as we sat together, whether she spoke or just listened.

She watched our discussions as though she were sitting in the stands at a tennis match. Almost always she was at least one volley behind, turning her head so slowly that she was often looking at my father as I was speaking, and vice versa.  At times she fancied herself the referee, suddenly interrupting our talk with an opinion or observation clearly intended to decide the matter she had in mind.  And sometimes, surprisingly, the matter in her mind was also the matter my father and I were discussing.  Though such lucid conversations were few, they were invariably…interesting.

On a cold wet day in January, “I need to order the seeds for my tomatoes,” Dad said. “Usually I have them by now.  I need potting soil, too.  Or maybe I’ll mix my own again this year.”  My father’s winters were spent planning for his springs.

“What varieties are you thinking about?” I asked him. “Last year the Celebrities did great. What else?”  I knew this question would prompt a full scale review of the seed catalogs.

Sure enough, Dad reached over to a rainbow stack of booklets resting within his arm’s reach. Each cover displayed a cornucopia of vegetables growing profusely in a perfectly planted garden.

Magnifying glass in hand, Dad reviewed them page by page. “Why do they make it so hard to see which ones are good for our climate?  It’s a good thing I know my tomatoes! Let’s see—will you write down these numbers for me?”

I went to the drawer for paper and pencil. Meanwhile, Mom was doing her best to see what Dad was studying. She stretched so far across the table her head almost touched his.

“Hang on a second, Dad,” I said and reached to the stack for another catalog. When I handed it to Mom, she sat back and grinned, but said nothing.

Like spring showers, Dad’s pronouncements of varieties and numbers were intermittent.  Each one seemed to startle Mom for a second.  Her head bounced up and down from the bright pages of her book to her observation of our tomato conversation, then wagged back and forth from my father to me as we discussed the relative merits of heat-tolerant varieties. Then—

“Peppers!”  Mom’s voice was the equivalent of a sudden crack of thunder.

Dad’s head jerked up and the magnifying glass dropped to the table. “What?”

“Peppers!” she repeated. “Tomatoes and peppers. Green peppers.”

“Well, by all means!” Dad almost giggled with delight “Peppers! Of course! Thank you for reminding us!”

One day Alzheimer’s would  steal Mom’s ability to interact with us in a positive, comfortable way. And eventually the disease would close her off from us entirely. But for now, the pepper remark and others like it, easy words that fit snugly into the talk of the day, were like bright yellow paint splashed against a gray landscape.

Still, with conversation as with other miraculous gifts, we had to be watching for opportunities. We had to make room for Mom in the conversation: invite her in with a simple question or a catalog or a picture, give her time to find her words, sometimes go to great lengths to understand her, and respond even we didn’t.

Because, of course, it was the interaction that mattered most. Mom with us, engaged to whatever degree was possible. Mom still part of her family. That was the miracle.

“Is not this the kind of fasting I have chosen: to loose the chains of injustice and untie the cords of the yoke, to set the oppressed free and break every yoke? Is it not…when you see the naked, to clothe them, and not to turn away from your own flesh and blood? Then your light will break forth like the dawn, and your healing will quickly appear  (Isaiah 58: 6,7,8  NIV).”

Keep us aware, Lord, that Alzheimer’s cannot steal the spirit or alter the identity of those we love. It may hide them from us, but You see all. Show us, please, how to connect with our loved ones. Even when they cannot participate as they used to, show us, Father, how to maintain family relationships and embody family love.

Unlikely Weapons

Inside a home where Alzheimer’s lives, any victory over the disease is cause for celebration.

Caregivers, therefore, are not shy about choosing our weapons for the battle. We use what we need.

China cups, for example. Invented memories. Straws.

My mother grew up in an English household where tea was consumed like water. As a child, I learned that tea was the ultimate antidote for worry. It dispelled fear and nourished courage. Tea and cookies celebrated an A in math or a date for the prom. A cup of tea could soothe the pain of a scraped knee; a pot of it could see you through the night when your heart, not your knee, was hurting.

Though Mom learned to love coffee after she and Dad married, Alzheimer’s took her back to a time when only tea would do. Since neither her judgment nor her motor skills could be depended on to keep her safe, I let the tea sit out of her reach until it had cooled to lukewarm. If she lost patience waiting, I added milk to cool it faster.

The small china teacup came on the battleground when Mom’s hands became too unsteady to hold the heavy brown mug she loved. I found the pretty little weapon behind the candlesticks in the china cabinet. Though its handle was small, Mom had grown accustomed to holding her mug with two hands; she could hold the teacup the same way. But before I could deploy the new weapon, Alzheimer’s attacked with one of the most powerful tools in its arsenal: resistance to change. Though we admired the purple pansies on the sides, the scalloped base, and the gold rim around the lip, Mom refused to drink from the teacup, insisting she must use her mug.

We retreated only momentarily before the solution presented itself to me. It came in the form of a seemingly random thought, but I knew right away it would work. I had experienced such miracles before: flashes of insight that, if I trusted them and used them, almost always led to success.

This time, as I stood beside Mom with the china cup in my hand, I “remembered” something.

“Mama,” I said with my eyes on the pansies and a hint of surprise in my voice, “I just thought of something! This is the purple pansy cup! Remember? The one Granny loved so much? The one she was hoping you would use? Oh, we finally found it! Thank You, Lord!”

When I looked back to Mom, she was staring at the cup. Slowly, her lips widened into an uncertain smile. I seized the opportunity: poured her tea, stirred in some milk, and set the cup into her two hands. Still smiling, she held it with ease.

While she sipped, I reflected on what I’d told her. No, I had never heard Granny say this was her favorite cup. But I believed Granny could see us, and I was certain she would love any piece of china or pottery or wood or stone that could bring comfort to her daughter, my mother.

The purple pansies brought Mom comfort for many weeks, until her hands grew too unsteady even for the little cup. Thankfully, I was prepared for this eventuality. My weapon in this battle? Straws. On the days when Mom was in the mood for tea, I held a neon purple straw—to match the pansies, of course—upright in her cup and she sipped. Another victory! A miraculous victory that I know Granny, too, was celebrating, with tea that was simply divine.

Like miracles, weapons against Alzheimer’s don’t always come with labels. Often they arrive disguised as small everyday objects or even random thoughts. It takes hope, the biggest miracle, to remove the disguises. Then we need faith to use the tools we’re given. Things like china cups, purple straws, a new idea.

Sharing information and help with other caregivers gives everyone more hope and faith and strength. If you’ve had success with unlikely weapons against Alzheimer’s, please consider sharing with us here. You can do that by means of a comment in the space below or send me an email at kbrown.writer and I’ll post your success.

Today I have made you a fortified city, an iron pillar and a bronze wall to stand against the whole land—They will fight against you but will not overcome you, for I am with you and will rescue you,” declares the Lord.   (Jeremiah 1:18-19  NIV)

Give us hope, Father, so that we watch for You and the help You have promised us. Give us faith to help and protect our loved ones, and to stand with other caregivers in the fight against Alzheimer’s. May our efforts always glorify You.