In the Blink of An Eye

Most caregivers discover that’s just how quickly moods can change. In the proverbial blink of an eye, those with Alzheimer’s or other forms of dementia can go from sullen and uncooperative to relaxed and quiet. Just as quickly, conversation and smiles may become shouting and restlessness. Obviously, it’s not too challenging for caregivers to keep up with positive change. But how do we shift gears when a positive mood suddenly becomes negative?

  • Listen

After a morning of easy talk, easy smiles, easy cooperation, Mom scowls, first at me, then at the plate I’ve just set before her. I study the plate but find nothing that might have upset her.

“It’s just lunch, Mom,” I tell her.

No doubt she can’t hear my upbeat, positive voice over her own shouting. “What is that? I don’t want it. I don’t eat here.”

sun and lightning

I’ve learned to pay close attention to what Mom says when she’s angry. The angrier she is, the harder I listen.  Sometimes her words tell me nothing; often her shouting contains no words. But this time she’s hinted at three possible causes for her anger. I address them one by one.

“This is your lunch, Mom. It’s pimento cheese, one of your fav—“

 “No! No, no, no!”

“OK. If you don’t want it right now, I’ll wrap it up and put it away for later.”

No shouting this time. She lifts one bare foot and kicks my shin.

I back away. “If you don’t eat here, where would you like to eat?”

 “At home. With Mama. Take me home!”

 An impossible request. Now what?

  •  Stay calm. And try to take your feelings out of the situation.

I take the plate away, sit with her at the table, and do my best to wipe my face clean of emotion. If I’m sympathetic, she often gets the wrong message. In this case, she might read my attempt to comfort her as “OK, I’ll take you home now.” But if I look stern or tell her what to do, her anger escalates. So I try to erase all emotion from my voice, too. “I know you want to go home, Mom, and we will. Soon. But right now we have work to do here.”

More shouting. “No, no, no, no!”

  • Try distraction.

I point out the window. “Look Mom! It’s that squirrel you saw yesterday! I hope he doesn’t go to the garden and eat another tomato off the vine.”

Without even turning her head, she says, “Take me home now.”

I try other distractions: folding pillowcases, taking a walk, a cup of tea. Each activity is met with a loud “No!”

  • If the situation allows it, wait until the storm passes.

So we sit. Or sometimes we walk; if Mom gets out of her chair, I follow her. This always makes her even more furious, but safety requires it. Eventually the shouting appears to be too much of an effort for her. She sits without a word. Is she ok now? Sometimes, but usually she’s still angry, glaring at me. Trying to keep my face neutral, I watch her and say nothing. I’ve found Mom can get angry in an instant, or sad in an instant, but happy takes longer.  I’ll have to be patient. Wait for her to give me the next cue. It could take 5 minutes or it might take an hour or more. But if I watch and listen, I’ll catch her cue.

rainbow

This time it’s hunger. Mom glances toward the kitchen a couple of times, so I get up, retrieve her sandwich, and set it in front of her again. I smile, but don’t say anything. The quiet calms her, I think, and her brain can rest instead of trying to make sense of what I say. If she wants the sandwich, she’ll eat it. If not, she’ll leave it alone or push it away.

In this instance, I wasn’t able to give Mom what she wanted. All I could do was stay close by and let her anger play itself out in a safe place. I had listened; because her request was impossible to grant, I tried to distract her with other activities; but at the end, I could only wait with her.

  • Sometimes you can’t wait for the mood to pass.

As difficult as it is when we can’t do what our loved ones want, it’s far more difficult when the option to wait is also taken away. For example, when Mom stops in the middle of the street, saying she’s tired, she wants to sit down right here, I don’t have the option of waiting until she decides to take another three or four steps to the curb. I must get her moving right away, and that means I have to take physical control. Keeping up a steady stream of calm conversation about anything at all, I stand with my shoulder behind her shoulder blade, put one arm around her waist, and hold her elbow with my other hand. I’m bigger than she is, so when I start walking, slowly, my body pushes her’s along. The element of surprise is also in my favor.

Of course we would never knowingly ask our loved ones to do something they’re too weak to do, but if we’re in a spot where they could be injured and they suddenly decide not to cooperate any more, we must have a plan to get them to safety, whether they help us do so or not.

It’s another sad truth caregivers must accept: we can’t keep those we’re caring for from experiencing feelings of anger, fear, sadness, suspicion. But having accepted that, we must also understand that there are ways to help them deal with those feelings. Focusing on what we can do keeps our own feelings more positive, our minds more creative, and our spirits attuned to gratitude instead of dread and fear.

Even to your old age and gray hairs I am He, I am He who will sustain you. I have made you and I will carry you; I will sustain you and I will rescue you (Isaiah 46:4 NIV).

Give us patience and strength, Father, as we care for our loved ones. We watch with faith and hope as You fulfill Your promise to carry and sustain them. Please give us wisdom as we work with You to rescue them from the pain of dementia.

How to Handle Sadness

Sadness stalks caregivers. It’s brazen, approaching us with no regard for where we are or what we’re doing.

Early on, the disease that has attacked our loved ones plants a dull ache in our hearts. Without warning, the ache can become a sharp pain, sharp enough to overwhelm us. A caregiver overwhelmed by sorrow cannot give care. So we must arm ourselves in advance with healthy ways of handling sadness.

First, a few things to avoid.

snowy trees

  • Don’t deny your sorrow, to yourself or anyone else.

If you try to pretend you’re not feeling pain when you are, at some point your mind and body will rebel. Using the tools they have, they will insist you acknowledge your feelings, first to yourself and also, at least to some degree, to those who know and love you. Their tools are formidable: insomnia, lack of appetite, depressed mood, and inability to concentrate are a few.

  • At the same time, don’t go looking for sorrow.

Chronicling the progression of the disease is a good practice, but it tempts us to watch only for the negatives. In addition to noting new incapacities, keep track of your loved one’s capabilities. Look—actively, intentionally—for things to be thankful for.

  • Don’t feel guilty because you’re not sad.

Maybe you think you should be sad when you take a break from caregiving, but you’re not. Maybe you think you should feel sad when your loved one must be moved to a care facility, but you don’t. The truth is, we don’t order up our feelings. They’re delivered to us at wildly random times in plain unmarked packages. There are no rules to govern them. The only thing we can control is our response to them. Responding to lack of sorrow by trying to manufacture guilt doesn’t make sense.

  • Don’t project your feelings on your loved one.

This is something I used to do with my mom. An example: I’d be brushing Mom’s hair in front of the bathroom mirror, remembering how her hair used to hang in long waves, shining clean, around her face. Seeing it as it was in the mirror—short, straight, dirty—led me to mourn the stylish woman she used to be. And because she could see everything I saw, I decided she must be sad, too, at growing old, with her hair and clothes so different from the past. So I’d start comforting her—both of us, really. The results became predictable: either she heard the emotion in my voice and became sad along with me, or she’d hear and not understand, which made her angry. Obviously, neither was good. I urge you to assume nothing with regard to the one you care for; instead, take your cues from them.

 

So what are the actions we can take to handle the sorrow of Alzheimer’s in a healthy way?

  • cardinal in treeTalk about your feelings with someone you trust.

Maybe this will be a good friend, or your spouse or pastor. Another excellent place to share feelings is at an Alzheimer’s support group meeting. The simple act of honest sharing with someone who cares about us, with people who have experienced what we’re going through, somehow brings relief. Once we shine the light on the truth, we no longer have to hide from it, or bear it on our own. In addition, the person we talk to can probably see the situation more objectively, and may be able to make helpful suggestions. Options—they’re always out there, just hard, at times, to see.

  • Allow yourself to be comforted.

This goes along with “Don’t deny the sadness.” Allowing others to comfort us emotionally and even assist with the tasks of caregiving means setting aside our ego. We must be able to say, “This is difficult. I need help.” Asking for help makes us stronger, not weaker; more effective, not less.

  • Journal about your sorrow.

Putting our feelings into words on paper can bring us much the same kind of relief as talking to a friend. While the paper doesn’t respond to us with words of understanding and care, the act of simply writing whatever comes to mind, knowing we are the only ones who will read it, frees us to be absolutely honest. Journaling can reveal and help us to understand thoughts and emotions and ideas we didn’t know we had.

  • Replace sad thoughts with happier truths.

Simply telling ourselves not to dwell on sad events and feelings doesn’t work. In fact, just pushing thoughts away can make it even harder to get rid of them. The better practice is to capture negative thoughts, send them away, but fill the hole they leave with another thought, one that is both positive and true. For example, instead of dwelling on “Dad didn’t recognize me yesterday,” concentrate on “Dad still trusts me to help him.” Replace “Mom hardly talks anymore” with “Mom likes it when I tell her the old family stories.” And don’t have the positive statements only as replacements; remind yourself of them often. “Chocolate ice cream is still Dad’s favorite.” “Sometimes Mom smiles when I sing.” “Dad still enjoys big hugs.” The more we speak the positive truth, the more we—and our loved ones—benefit.

  • And, of course, we can pray about our sadness.

The Lord doesn’t promise to take away pain in our earthly life, but He says He’ll never abandon us to it. He sends His comfort through our friends and family, in nature and music and beauty of all kinds, in ways we can feel with our senses and in secret ways only He and we know.

We caregivers can’t escape sadness. Watching a loved one, in spite of all our best effort, lose more and more of life can seem unbearably sad. But we are called to care. And so we’re enabled to bear the pain—not walk through it as if it weren’t there, but bear it, carry it with us as we help our loved ones on their way to an eternity free of all pain and sorrow. Their future makes our burden lighter.

“Surely He took up our infirmities and carried our sorrows….and by His wounds we are healed” (Isaiah 53:4,5 NIV).

Lord Jesus, as we see the suffering of our loved ones, You alone know the heaviness of our hearts. Comfort us, please, with Your love and care, so that we may be comfort for others.

How Do You Feel? Think About It.

If only we could guide our loved ones to act and feel in ways that would make caregiving easier for everyone. Of course that’s impossible. But we can help ourselves. The problems we experience with our personal lives and emotions are within our power to resolve. And when a caregiver helps him/herself, the person cared for also benefits.

We’ve talked in earlier blogs about isolation and loneliness. We’ve talked about frustration and exhaustion and the conflicts between duties at home and duties as a caregiver. For me, embarrassment was another challenge.

Embarrassment led me to do things that were definitely not in Mom’s best interest.

When I was a young mother, I was embarrassed any time one of my sons misbehaved in public. I felt the hot color rise to my face and I was certain everyone around thought my boys weren’t being raised properly. Years later, I felt the same embarrassment as a caregiver. When Mom refused to answer a neighbor’s hello, or went somewhere wearing spotted clothes, or shuffled her way around the counter to hug a cashier, I was humiliated. Surely people were thinking I was the caregiver—didn’t I care how Mom acted or dressed?

I did care. I blushed when Mom pointed to an array of artificial flowers and suggested to another customer he should smell them. I tried to hurry her along as we walked from lobby to examining room at the doctor’s office, hoping the others waiting in the long line of chairs wouldn’t notice her mismatched clothes and dirty hair. In restaurants I was so afraid she’d lose her grip on a cup or a glass, I practically held it myself.

How could I solve this problem with Mom, I asked myself. How could I get her to dress right and act right and be more careful?

I worked hard–and made a lot of mistakes.

  • I timed our errands carefully, trying to choose a good time on a good day. But those times were utterly unpredictable, not only as to when they would occur but also as to how long they would last.
  • I put some of Mom’s favorite clothes aside, the ones she liked that still looked presentable. I saved them for her to wear on errand days. But telling her what to wear on any day was seldom successful. So I withheld her favorites from her when she wanted to wear them and tried to make her wear them when I wanted her to.
  • Mom usually enjoyed going out to eat, but her hands were unsteady. Fearing she’d spill something, I made the meal an ordeal for both of us, as I cautioned her with every bite and reached across her to steady her tumbler of water or tea.

What was I thinking??

The problem is that I wasn’t thinking. I was only feeling.

dog afraid

One day as a waitress was serving us breakfast, I held Mom’s hands back so she wouldn’t reach for the plate herself. The waitress looked at me and said, “You don’t have to hold her. She’s all right.” Then she focused on Mom and smiled. “We can work together here, can’t we?” she said. Mom’s face lit up like sunrise.

That incident prompted me to look harder at myself. I had told myself I was protecting Mom’s dignity, protecting her from embarrassment.  But looking back on the happenings of that morning, I saw clearly that the waitress was right. And I was wrong. I had felt I was taking care of Mom. But I wasn’t doing a very good job of it.

As I accepted that I was wrong, I knew I had to change something. I thought about it. A lot. What I discovered as I dug into my feelings—journaling about them and sharing them with those close to me—is that the motivation for my actions was not concern for Mom’s dignity, but for mine.

I was protecting myself from embarrassment. Adding stress to our days by trying to predict Mom’s moods. Denying her the pleasure of wearing her favorite clothes by hiding them until I decided the time was right. Stealing her fun in eating out by treating her like a rowdy child.

Once I identified what I was really feeling, I realized I was the only one who could fix my mistakes. Take Mom out of the equation. So I thought some more.

  • I began to see that how Mom acted in public was important only insofar as it affected her safety.
  • Experience led me to understand that what she looked like was much less important than what she ate, how well she slept, how regularly she took her medications.
  • And instead of worrying about her spilling a glass of tea, I solved the problem by simply asking that her drinks be served in a small paper cup, lighter, easier for her, and safer. 

stock-dog playing

The stress level went down, for me at least. And because Mom seemed more relaxed as we prepared to go out, errand days became a little easier. But more important to me than either of  those benefits was the realization that my feelings of satisfaction  associated with helping Mom live fully and happily were far more pleasant than the embarrassment and frustration provoked by my false pride and embarrassment.

Of course it’s impossible to tell ourselves what to feel. But we can and must control the actions we take as a result of our feelings. Whether the emotion is guilt, fear, embarrassment, anger or any other of the feelings most caregivers experience, we can think about it, name it, and then either help ourselves or ask for the help we need.

When we take care of ourselves, everyone is better off.

I instruct you in the way of wisdom and lead you along straight paths. (Proverbs 4:11 NIV).

Father, please open our eyes to see clearly our loved one’s needs, and also our own. Guide us to the truth, and help us use it for the good of those we care for, to bring them, and ourselves, more abundant life.

How To Help A Caregiver

It’s easy for caregivers to feel invisible. Too often they see their own lives being swallowed up by the needs of the people they care for. And in the case of Alzheimer’s, those needs only grow as time passes. So even as caregivers step up and step up to do more and do more, they still wonder if they’re doing enough. The cycle of worry, fatigue, and unnecessary guilt is disheartening, at best.

 one alone

What if you could help? What if you could help care for a caregiver?

  •          Do you have to be trained? No.
  •          Do you need experience in caregiving? No.
  •          Is it going to take a lot of time? No.
  •          Is it hard? No.

Really? Is that true?  Absolutely.

Being the one in charge of someone’s care isn’t easy. Generally it takes a lot of time. Experience doesn’t necessarily make things run more smoothly. And some days it’s very hard indeed. How nice it would be to have someone around who can clean the house while we try to figure out what our loved ones want to eat. Finding someone who can talk them into taking a shower would be…like…a miracle! And if someone would watch after them while we take a couple of hours off, we’d be giddy with excitement.

But you know what? As important as it is to have help with the tasks of caregiving, and it’s very important indeed, caring for the caregiver is equally important. Maybe more so. Because somehow we can recruit help for caregiving tasks, or we can find a way to do them ourselves, or we can pay someone to do them. What we can’t do is make ourselves less lonely. Talking to ourselves doesn’t give us a lot of support or encouragement. We can try to fight the doubt and the guilt, but it’s hard to convince ourselves we’re doing all we can, all we should, to take care of our loved ones.

That’s where you come in, if you will. Helping the caregiver doesn’t have to be complicated or time-consuming or tiring.

  •       If you know how to be a friend, you’re trained.
  •        If you’ve ever visited with someone, in person or on the phone, you have               experience.
  •        The amount of time it takes is completely up to you.
  •         Helping isn’t hard. In fact, it’s a piece of cake. Or a cup of coffee. Or a few minutes on the phone. Or a knock on the door.

lean on me What if you came to visit for a bit while we’re working? You wouldn’t have to do anything except be yourself, someone who doesn’t need anything, just there to give us some company. Or maybe you could phone, or we could have coffee occasionally. We’d have someone to tell about the latest caregiving strategy we’ve figured out, or maybe just someone to vent to.  Or—imagine!—we could talk about anything except caregiving.

Caring for a loved one with Alzheimer’s or any other debilitating disease is a task filled with blessing and burden, opportunity and impossibility, love and fear and enormous self-doubt. Having someone who will come alongside, listening, encouraging, affirming, is help beyond measure.

Are you a caregiver? This is one kind of help you cannot afford to be without. Ask for it, please.

If you’re not a caregiver but you know one, you can be a help. Beyond measure.

“Which of these three do you think was a neighbor to the man who fell into the hands of robbers?”  The expert in the law replied, “The one who had mercy on him.”  Jesus told him, “Go and do likewise”  (Luke 10: 36-37  NIV).

O God, our loving Father, thank You for all those who reach out to us with support and encouragement. They are faithful to You, sent by Your hand and filled with Your love. Please bless them as they bring Your comfort to us.