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.

 

 

 

 

 

 

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Surprise! Can Help You

You can often win cooperation from the one you are caring for by using the element of surprise.  What I mean by surprise is this:

You don’t have to announce everything that’s about to happen.

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Some days, Mom’s go-to answer was “No.”  “No” from breakfast to bedtime and everything in between. In spite of her refusals, life had to go on.

I remember well the times I felt extreme embarrassment when I went out in public with my mother. Her clothes were seldom fresh. Her shoes, white tennis shoes dotted with green shamrocks, were tan—brown in places—with spots of indistinguishable color. Worse than her clothes was her physical appearance. Her hair brought to mind a dirty door mat sitting crooked on her head. Her fingernails were long and tobacco-stained. The crust of untreated conjunctivitis lined the edges of her eyes.

As we walked into the grocery store or post office or bank, I usually felt a red-hot blush sweep up from my neck to my forehead. I thought I saw the greeter, the clerk, the customers staring at us, aghast at Mom’s appearance and wondering why I didn’t take better care of her. Of course, most of them had no way of knowing how difficult it was to get Mom dressed at all.

We know that Alzheimer’s wants it all. Not content to steal its victims’ memory, knowledge, judgment, and physical and emotional health, it will also take every shred of their dignity.

If we let it. We need a strategy. 

The subject of a caregiver’s embarrassment and imagined judgment from others is an important one which has been discussed on this blog and will be again. But the point I’m making here is this: I found a way to ease the struggle. Surprise!

shoes on the floorHere’s an example. A typical morning might include a conversation like this:

I start with great enthusiasm and a big smile. “OK, Mama, let’s get your shoes on!’

“I don’t need any shoes.”

Uh-oh. “Well,” I say with a hopeful chuckle, “you don’t want to go outside barefoot, do you?”

“I don’t want to go outside.”

“But we’re going out to breakfast!” I say.

Mom smiles. I knew that would work. I smile back.

I put her shoes on the floor beside her feet, kneel down, and reach for her left foot.  Faster than she’s moved all morning, she pulls both feet back and hides them under her chair.

“I don’t need any shoes.”

So we’d wait a few minutes and repeat the whole process again. And again. Sometimes it was lunch time before we made it to breakfast. Sometimes we didn’t get to breakfast—or the bank or the store or wherever—at all.

Lack of cooperation is something most caregivers experience. It can move from the level of frustration—“I don’t need any shoes”—to danger—“I don’t need those pills.” Here’s my suggestion:

Don’t announce what you’re going to do. Let your loved one be surprised!!

As a new caregiver, I thought I could keep Mom calmer by telling her in advance everything that was about to happen. As the disease worsened, however, I could see that my explaining what was going on became another source of confusion for her. She began to fight any change I suggested.

So I stopped suggesting and started surprising. I learned that—to use our example—sometimes the easiest way to put Mom’s shoes on her was to put the shoes beside her chair, kneel in front of her, lift her left foot, and put the shoe on it. Without stopping or even looking up, I’d move to the other foot. When both shoes were on, I’d make eye contact, smile, and talk to her about something that had nothing to do with shoes.

ballet shoesWhat happened? Here’s how I explain the success of the method:  When our loved ones refuse to cooperate, I believe it’s because their power-word is—and always has been—“no.” I think some vestige of memory or instinct leads them to protect themselves from the unknown. Whether with their mouths or their actions, they just say no.

But in the case of our shoe-example, Mom had no chance to say no. I believe the surprise of me lifting her foot consumed all Mom’s attention.  My saying nothing about shoes, either before or after, let the event slide by too quickly for her to complain. And because her mind couldn’t take in or process the actions I took, she was as surprised the next day as she was the first.

[The surprise method can be effective in many situations. I was especially grateful I could use it to get Mom in the bathtub.  A later post will explain that process in detail.]

Maybe my reasoning is flawed as to why this simple method works, but I can tell you from my own experience and that of other caregivers I’ve shared it with — it does work. Not all the time, but blessedly often.

dignity and shoesAnd it preserves dignity. Our loved ones with Alzheimer’s reach a point where they don’t know how they look or smell or act. They no longer understand the concept of dignity and wouldn’t know if they lost it. But we know. Caregivers know. If we let those living with Alzheimer’s descend below the level of their God-given human dignity, we have failed them. Once I understood that, my embarrassment at Mom’s appearance turned to new respect for her.

The last gifts we can give our loved ones live on after they themselves are gone: their dignity, our respect.

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In You, O Lord, I put my trust;
Let me never be put to shame.
Deliver me in Your righteousness, and cause me to escape;
Incline Your ear to me, and save me.
Be my strong refuge,
To which I may resort continually;
You have given the commandment to save me,
For You are my rock and my fortress.  (Ps. 71:1-3  NKJV)

Dear God our Father, You chose to create each one of us. You created each of us in your likeness. Please help us to care for our loved ones; may we look at them and see You.