The Bluebird of Happiness

Often it seems nothing we can do or say will bring happiness to our loved ones with Alzheimer’s. Since they gradually lose the power to choose their own pleasure, caregivers are left to use trial and error to guess what might bring a smile.

angry bluebirdFor me, when often became even more often, and even more often became ‘way too often, I re-discovered a happiness strategy from back before I was a daily caregiver…back when I was a daily mom. What I remembered is this:

Sometimes it’s what we don’t do that makes the difference between sullen and happy in those we care for.

I remembered the occasional evenings when I allowed my sons to skip a vegetable at dinner time…and decided maybe Mom didn’t need to wear fresh clothes every day. Some days I didn’t insist she drink a full glass of water at every meal; if she wanted juice at lunchtime, that was fine. No socks with her tennis shoes today? OK.

slim bluebirdWhen I let some things slide, I found that, even if I couldn’t always get her to smile, I could at least erase her frown.

Why was it that skipping an action worked better doing something?

I believe the “never mind’s” worked better because the “please do’s” were beyond Mom’s grasp. She was able to let me know if something we were doing was UNpleasant, but she could no longer think of things she might enjoy. Or maybe she could think of some things some times, but she wasn’t able to put them into words.

The things we skipped depended, of course, on our activities for the day and, even more so, on Mom’s safety and hygiene. If we had a doctor’s appointment scheduled, I couldn’t let Mom go out without shoes. And we always had to keep her hands clean. Getting Mom to take her medications was a must; making sure she drank enough fluids was a must; and there had to be a limit to how many days she could wear her favorite outfit without washing it.

The “must’s” were seldom easy. But they were possible. How? By accommodating Mom’s wishes the same way I used to accommodate my children. I said yes as often as possible and insisted on no when it was necessary.

And I went a step further with Mom. When I had to insist she do something my way, I tried to include an enticement of some kind.snowy bluebirdFor example:

If Mom scowled when I came toward her with shoes in my hand, sometimes—on days when I knew she could stay indoors—I was able to agree: “No shoes? OK.” But if we had to go out, I had to insist. “Well, you’re going to need shoes today. But here…why don’t you feed Charley-Dog some treats while I help you get your sandals on?” I knew feeding Charley was a fun–and dependable–distraction.

If Mom refused her lunch, I could say, “OK, but I’m afraid you’ll be hungry later. Tell me if you are, please.” If, however, she had already skipped breakfast, I had to insist she eat at least a few bites. And I usually had to feed her myself. Beginning with a potato chip got us off to a good start, and a couple more interspersed through the process helped me keep things moving.

When it came to clothes, I almost always let Mom wear her threadbare or hole-y favorites, which I put through the washer and dryer after she went to bed. As long as she was clean, dry, and modest, she was fine to go wherever we had to go. If her old clothes made her feel better, we were happy for her to wear them.

Please understand: when I say I used  some of the same strategies with Mom that I used with my children, I mean no disrespect to her. Alzheimer’s had robbed her of reason, judgement, and self-control. To expect things from her she could no longer give would have been cruel. Instead, I simply made it easier for Mom to go along with the necessities. And I had no fear of her expecting the same “privileges” every day–each day was all too new for her. I believe Mom remembered me and Dad when she awakened in the mornings; that much memory allowed her to trust us, at least most of the time.

Our loved ones with Alzheimer’s travel through life constantly on the edge: not remembering where they’ve been, unable to see where their next steps will take them. So it’s up to us to be flexible. We must make their paths as wide and comfortable as we can, by putting as few demands on them as possible.

nervous bluebirdHappiness for someone with Alzheimer’s? I think it’s like a little bird, a nervous little bird, to be sure, but willing to rest in a spot feathered with reassurance and safety. If we provide a house and fill it with all the comfort and security we can manage,

flying homeeven if we don’t often see the little bird, we can trust that our loved ones are all right.

Blessed are those who have regard for the weak; the Lord delivers them in times of trouble. The Lord protects and preserves them—they are counted among the blessed in the land….  (Ps. 41:1-2  NIV)

Lord, you are the source of all our wisdom. When we turn to you and ask for help, you always answer. Thank You for helping us help our loved ones.

Do They Know We Love Them?

How can we show them our love?

It’s a painful question most caregivers must eventually face. How can we help someone with Alzheimer’s know, believe, trust our love?IMG_0064In the beginning, we caregivers are almost as confused as those we care for. We struggle mightily to appreciate the difference between our loved ones’ willful actions and the words and actions dictated by Alzheimer’s. We ache with the knowledge of what is to come. We do our best to do it all, do everything for them, and yet everything grows every day and what we do is never enough.

Meanwhile our own fear and frustration are a weight we carry, not entirely invisible, revealed in sighs and frowns and impatient words. Time passes while we learn more about the disease and the role we must play.not quite full moonIf we’re wise, we ask for help and accept it when it’s offered. We take care of ourselves as well as our loved ones and in doing so, we keep going. For them.

And eventually we realize that everything we’ve done for them has also been for ourselves. Looking back to before Alzheimer’s, we realize: we’re different. Whether we’ve seen it as a duty to them, a job no one else could or would do, a way to repay the love and care we’ve received, or a privilege we’ve been accorded, our care for loved ones with Alzheimer’s has made us grow.

But we can’t avoid the ugly truth: while we’ve been growing through the pain and the work and the caring, our loved ones have been shrinking. moonliteThough we do our best to see them as they were, we must admit they’ve changed.We can’t see the mother she was, the father he was; can’t imagine her twisted hands sewing a wedding dress, his crooked fingers tightening a bicycle chain; can’t hear the words she used to sing while she polished the floor on her hands and knees; can’t feel the solid safety of his arms as he carried us asleep from car to bed.

We can’t see them as they were. But we remember.

And they remember, too. They must. Somewhere inside our loved ones, they still know what love is, and the memories remain. Where else would they go? They weren’t flesh that they could die, so we have to believe they live on, out of reach because of Alzheimer’s, but living in spite of it.

In those memories, they know our love. They remember when we helped them dress and held the spoon they couldn’t manage. They remember how gently we washed them and how slowly we walked with them and how often we answered their questions. They haven’t forgotten, at least not forever.IMG_0071So it’s up to us. We can choose to trust in the pain we see, the sadness of their forgetting; or we can choose to believe in the joy of the unseen, the happiness of their remembering.

For me, it’s an easy choice. I choose joy.

I would have lost heart, unless I had believed that I would see the goodness of the LORD in the land of the living. (Ps. 27:13 NKJV)

Lord, help us to believe. Help us to trust that in Your perfect care for our loved ones, You make certain they know we love them. Thank You, Father that our love for them is only a shadow of Yours. Thank You for being our Guide through the wilderness of Alzheimer’s.

In Training: Bright Expectations

Fear makes our world dark. Sometimes the world of a caregiver is black with it.

For today, we fear the confusion, anger, and paranoia that are devouring our loved ones. When we think of tomorrow, we know it will bring only further decline. We wonder when it will come, what it will look like, how we will manage it. 

Fear can narrow our vision to the point where we actually create what we fear. We watch so hard for the next bad thing that bad is all we see. Discouragement is all we hear. Dread is all we feel.

Fear makes us weak, and weakness gives the victory to Alzheimer’s. But what if we get strong? What if we go into training, train ourselves to look for a bright spot every single day? Expect  that bright spot? Or two? Or three?

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Fear threatens us all—Mom, Dad, and me. We’re paralyzed by it, each in our own way.

Mom is afraid of people and situations that are born in her imagination and grow there to monstrous proportions. She tells us at least once a week about a man who comes to the door and tells her that, because the fence surrounding the back yard is a few inches into the neighbor’s property, the house my parents have lived in for 45 years will be repossessed.

“The fence is perfect, honey!” Dad tells her. “No one will take our house away.”

“Oh, you never believe me. He’ll be here soon. Maybe in a few minutes!” Mom’s eyes search the room. “Where’s the broom? I’ll beat him with the broom. You never do anything. I’ll beat him.”

She seems to satisfy herself that she has a plan. But we’ll hear about the man again in a few days. I move the broom to the garage just in case.

Dad fears Mom will leave him. Always aware he is powerless to stop the disease, he’s certain one day she won’t recognize him. His love for her won’t matter.

Already their conversations are shallow and repetitive.

“How are you feelin’ today, honey?” Dad will ask her.

“Fine, Daddy. I’m fine,” Mom answers. “And Charley is fine, too. He’s really fine.”

Charley is the black miniature poodle who is treated by both Mom and Dad as their third child. The only boy.

“Ole Charley needs to go to the vet for his rabies vaccination,” Dad mentions. His casual words are a mistake, causing Mom to ask again and again what rabies is and does Charley have it and when can we take him to the doctor.

“I don’t want to talk about anything any more,” Dad tells me later. “Everything I bring up scares her.” He puts his elbows on the table and bends his face down into his palms. Talking is all they have.

My fear is wide and deep. I know that, when we see the doctor, I must confront him with the truth about Mom’s mental status. But Dad wants me to be quiet. Maybe there’s no problem, he tells me. If there is, the doctor will discover it on his own. That kind of thinking is, I know, almost as irrational as some of the scenarios Mom comes up with.

I will do what I must do, but I fear Dad’s anger. Maybe he’ll tell me to go on, go home, don’t bother trying to help. Maybe he’ll be hurt because I didn’t trust him to know what’s best. I fear causing him more pain. I fear losing his love.

Mom is afraid of things that won’t happen. Dad’s afraid of things that will almost surely come to pass. I’m afraid I can’t rescue either of them, or even myself.

Fear paralyzes us all. And we let it.

Mom has no choice, but Dad and I allow fear to win. Dad and I have choices. Why don’t we see them?

The first choice we must make is to consciously break free of the narrow, dark tunnel of fear. How? Replace fearful thoughts with hopeful ones.

Joy is alive in this house.

I can broaden my vision.

I can focus on light, not darkness.

When I search, I can find something to smile about.

It won’t be easy at first. It will take deliberate effort. Maybe I’ll have to write down the positive statements, carry them with me so I’ll remember to think them. Maybe I’ll say them out loud—challenge Dad’s negative expectations as well.

I can’t change Alzheimer’s, but I can change my attitude toward living with it. With deliberate effort, I can focus on the positive, the sweet miracles that—even in the darkness of Alzheimer’s—play themselves out every day.

Miracles like the bird that pecked at the kitchen window this morning. Mom wasn’t happy about it. She glared at him. He glared back. She glared more, leaning slowly but relentlessly closer to the window, until her nose almost touched the glass.

Finally the bird had enough. He flew away.

When Mom turned from the window, we saw she hadn’t forgotten how to smile. With lips and eyes and a squaring of her shoulders, she celebrated her victory.

“Did you see that, Daddy?” she asked my father. “That bird won’t hurt you now. I scared it away.”

“You sure did!” Dad boomed. Then, more softly, “Thank you, honey.”

So. Right here, right now, we have a choice. As the hours of this day pass and moods change and change and change again, will we walk in the light of Mom’s triumph over the bird? Or will we allow ourselves to stumble back into the darkness of fear? The miracles are there; they will unfold for Mom whether we notice them or not. But we’ll see only what we’re looking for.

Why not watch for miracles?

Open our eyes, Lord, and feed our spirits. As we help our loved ones through each day, nourish us with concrete signs of Your gentle care. Give us strength to expect Your power, faith to watch Your miracles unfold, and joy as we thank You for these sweet signs of Your presence.

In the morning, O Lord, You hear my voice; in the morning I lay my requests before You and wait in expectation.  (Ps. 5:3  NIV)

Lost, but Not Alone

“Be strong and courageous.  Do not be terrified; do not be discouraged, for the Lord your God will be with you wherever you go. ”      ( Joshua 1:9)

When we left the motel this morning, Mom was excited to visit Mark. But somewhere between there and Mark’s apartment, she changed her mind. I guess. All I’m sure of right now is that Mom doesn’t know where we are, and wherever it is, she doesn’t want to be here.  

I look at her perched on the edge of the brown hand-me-down sofa and thank the Lord Mark’s still at work. Then I go over the last few hours one more time, trying to understand.

When we turned into the parking lot of the apartment a few hours ago, Mom was dozing.  “We’re at Mark’s house!” I sang out. 

Her response stunned me. She spit out the words like acid. “Where are we? Why did we come here? Take me home. Right now!”

Panic rose in my throat as all that I had questioned the night before came roaring back. What was this?  

Somehow Dad coaxed Mom out of the car and into the apartment. Separately and together we reminded her we came to Colorado to see Mark.  In reply, she kicked off her shoes and shouted, “Turn on the TV!  Sit down and be quiet!” 

Following Dad’s lead, I obeyed. We sat silent and still, like rabbits in a thicket waiting for the fox to pounce.   

After half an hour, just as the full absurdity of the situation hit me, Mom announced she was going for a walk. Alone. Barefoot. In a strange neighborhood.

What happened next runs through my mind like a horror movie. Dad standing between Mom and the door.  Her mouth open, yelling; her hands beating at his face and chest.  Dad grasping her shoulders, holding her at arm’s length.  Me beside them, pleading, “Stop, Mom!  Stop! That’s Dad!”

My father eventually maneuvered her to the sofa.  Her body still taut with rage, she fell into the cushions, landing slow and clumsy, like a tossed log.

No matter how many times I go over the events, they won’t add up to anything rational.

At last Mom lays her head on the arm of the sofa. Thank You, Lord; she’s asleep. Still, Dad won’t talk to me, won’t even look my way. He sits in a worn leather recliner, staring at his knees. Dead calm rules the room.

Is this real? My mother yelling at my father? Hitting him? Never. But she did. Maybe she didn’t realize it was Dad? Finally I say it in my mind: Alzheimer’s. 

Is this Alzheimer’s?

When Mark gets home, Mom wakes up.  My heart cringes, then expands with joy at the miracle I’m seeing. Mom’s smiling, calling Mark by name. Apparently the tempest has passed. Dad’s face can scarcely contain his happiness. 

So we eat.  We laugh.  Just for tonight, I pretend nothing happened.

I’ll deal with tomorrow tomorrow.   

God, my Father, I know it was Your power that stilled the storm in my mother’s mind.  Your compassion gave us the comfort of familiar pleasures.  I trust You to lead us forward, one day at a time, down this unknown road we travel.  You know me, Lord.  Don’t let me race ahead toward panic.  Remind me to let You go first.  I will follow wherever You lead.