The Power of Need

As much as we love them, we still get tired.

As much patience as we show them, we still get frustrated.

As many times as we come back to the caregiving task, and come back and come back and come back, we still wish it were easier. More pleasant. Or over.

But the task goes on and here we are.

Why?

For the same reason we showed up that very first day: need. When we look at our loved ones, the need we see in them has the power to pick us up and keep us going. It makes us dig deep for more patience. And it draws us back to the caring, day after day.

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Need. In my parents’ home, I could see it, yes, but I could also feel it, like an atmosphere that weighted the air.

I left the early morning scent of grass and pansies behind as I stepped over the threshold.

“’Mornin’, Katrinka!” Dad bellowed from the kitchen.

I smiled as I always did when Dad called me by the name that only he used. But my radar had already detected a something’s-not-right signal in his voice. Couldn’t be Mom; she sat at the table, tea in front of her, a little orange juice left in her glass, and toast spread with her favorite plum jelly cut into bite-size pieces on her yellow breakfast plate. Charley-Dog sat at her feet, waiting for the treats that were sure to drop down to him. Everything in order—but not right.

“How are you this morning, Mama?” I asked as I made my own tea in the kitchen.

No answer.

I sat at the table and tried again. “You doing ok, Mama?”

She shifted in her chair, smiled, and tapped one index finger against her cheek.

Dad sat down hard and gave a loud sigh, like steam escaping from a pressure cooker. “See that?” he said, nodding toward Mom. “That’s all she’s done all morning. Drank her juice ok, but took one bite of her toast, spit it out, and won’t eat another thing.”

When I looked back to her, Mom’s lips were still smiling. But the rest of her face frowned.

“What is it?” I stood over her and studied her cheek. When I touched it she backed away. “Does something hurt, Mama?”

Again, the tapping. Again, Dad’s sigh, to which he added harsh words: “Marie, tell us what you want to say.” Then, to me, “I looked in her mouth. Can’t see a single thing wrong.” And back to Mom, softer this time, “Marie, eat some of your toast. You’ll feel better.”

Surprisingly, Mom complied. She picked up a little square, one with a big glob of jelly on it, and put it into her mouth. As soon as she closed her jaws, they snapped open again. She worked her lips and tongue until the toast fell out.

“Daddy, it has to be her teeth,” I said. “Or something with her jaws.”

“I thought so too. But I checked and her teeth look fine. Her jaws? How could she hurt her jaws?”

By now Dad’s voice was so loud, it had blown the smile from Mom’s face.  She half stood, sat again, shuffled her bare feet on the floor beneath her chair. While she shuffled, I gently touched her jaws. “Will you open your mouth for me, Mama?” She lifted her head, but kept her mouth closed. “It’s ok,” I said. “I won’t touch anything; I just want to look.”

In this blog, we’ve talked about the drastic decline in Mom’s personal hygiene. Barely often enough, I managed to get her into the bath tub. Far less often, I sneaked in a shampoo. But her dentures? I hadn’t ventured there. Getting them out, cleaning them, and getting them back in? The right way? No. I had drawn the line at teeth. A perforated line, maybe, but broad and bold. Dad used to run a toothbrush around in Mom’s mouth occasionally, but she hadn’t allowed that in a long time. Years. So I really wasn’t anxious to examine Mom’s mouth and teeth.

But, need. This room—Mom with no breakfast and that tapping finger, Dad with the anger he always wore when he was worried about her—this room was full of it. Scooting through a gap in the line I’d drawn, need demanded I help.

When Mom opened her mouth, I saw the problem immediately: a line of teeth pointed down into her bottom gums. The dentures on top were fine, but the bottom ones were upside down. Teeth-side down. So when Mom tried to chew, the top teeth pressed the bottom teeth into her guns.

“It’s easier to get forgiveness than permission.” In the course of our caregiving days, Dad and I had come to believe in that principle. Heartily. So despite my promise to “just look,” I reached into Mom’s mouth and grabbed the bottom teeth. Immediately, her torso drooped, in relief, I’m sure. Mine stiffened as I realized what I held in my hand. Without looking too hard or thinking too long, I turned the dentures over and dropped them, right side up, back into Mom’s mouth.

This time her smile covered every feature of her face. Dad sputtered his relief, though he simply couldn’t understand how in the world Mom had managed to engineer a way to bite herself. “Oh, I know she didn’t mean to do it,” he said as I washed my hands. “But she did it! No wonder she couldn’t eat!”

A still greater wonder to him was the fact that he had looked in her mouth but hadn’t seen anything wrong. I waited till later in the afternoon to tell him that, in a case like this, he must call me to check things out. His macular degeneration made us unable to trust anything he saw, or didn’t see.

Once the problem was solved, we had a good laugh about it. Mom ate all her toast and wanted more, so Dad made more and we all had some.

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Need. It’s always there for caregivers. It’s the enemy we fight and the reason we keep returning to the battlefield.

And there is another, more personal way need can help caregiversSurely we have needs of our own. We crave rest to battle exhaustion. Relaxation to replace stress. Certainty in the face of confusion. Hope to overcome despair.

How do our own needs serve us? They remind us to look up. They turn us to the Lord, the one Source of all power and strength and courage and mercy. Our needs teach us to ask for what we need, and to be grateful for what we receive.

Then your light will break forth like the dawn, and your healing will quickly appear; then your righteousness will go before you, and the glory of the Lord will be your rear guard. Then you will call, and the Lord will answer; you will cry for help, and he will say: Here am I (Isaiah 58:8-9 NIV).

Lord, remind us to look to You every day and night. You alone can give us the strength, wisdom, and perseverance to meet the needs of our loved ones. You alone can comfort, strengthen, and encourage us. You are All in all. We praise You. We thank You.

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Be Prepared

The death we experienced in our family a few months ago began as an emergency. The ensuing tragedy stopped me cold. I’m on my way back now from that black pit, but getting past the shock and learning to accept the pain has taken time. And lots of work. Thank you for your prayers for our family.

Emergencies are pretty much a fact of life. They will come. Some will be big; some, small. All will be unexpected and all will require immediate action that takes us away from our everyday tasks.

Now I find myself wondering: If this tragedy had struck while I was taking care of Mom, how would I have handled it? Alzheimer’s doesn’t give anyone a break, even for emergencies. Caregivers can’t demand that life stop to let them grieve or be ill or even go to the dentist. There’s no time-out while we buy groceries or get a flat tire fixed.

What are caregivers to do?

The answer: we must take care of ourselves. And I don’t mean be careful not to get sick and be sure to keep good tires on the car. I mean, in two words, be prepared.

We’ve talked before in this blog about the wisdom of bringing in help to assist at-home caregivers. We’ve emphasized that caregivers need breaks. We’ve noted that a loved one with Alzheimer’s will often be more cooperative with a stranger than with someone more familiar. We’ve made a point for safety—professionals have expertise and experience that make certain caregiving tasks, bathing for example, easier and safer. Any one of those reasons may justify bringing in a helper, professional or not.

But a still more compelling argument can be made for having backup: Emergencies will arise. Not if, but when they do, they can’t be ignored. Caregivers get ill; their cars break down; other family or friends suddenly need their support. Maybe there’s a funeral they must attend, a time of grieving they cannot avoid.

During a particularly difficult time in my mother’s illness, I faced the kind of emergency I had feared but not prepared for. Dad was struck with a life-threatening heart ailment. Obviously, I couldn’t be with him at the hospital and at home with Mom at the same time. By the skin of my teeth, I was able to get someone to stay with Mom during the day. At her bedtime, I left the hospital to be at home with her until morning.  In spite of my lack of planning, we managed. But the time would have been easier for Mom if she were already accustomed to staying with someone else. And Dad and I could have avoided the additional stress of worrying about her.

“We’ll have no outside help.” Dad voiced that order many times in my early caregiving days. I should never have agreed to it. As the months passed and I saw the folly of his words, I should have challenged them. I should have gathered a lineup of helpers—or at least one!—who could step in if I was called away. Just the security of having people I could count on to give me and Dad a break would have made all three of us safer and healthier. But I didn’t speak up. And I regretted it.

Spelling Game says Help MeSo I urge you, if you’re an at-home caregiver, ask for what you need. Be prepared. Have someone who can take your place—when you need a break, when you need help with a particular task, or in an emergency. That’s taking care of yourself. And taking care of yourself is taking care of your loved one.

And if you know someone who is a caregiver, remember that life doesn’t stop for Alzheimer’s. Taking over care duties for a few hours is great, but if you’re not comfortable with that, rest assured there are other ways to assist. Pick up a grocery list and do the shopping now and then. If the need arises, take the caregiver’s car to be repaired or be the stand-in to meet service or delivery people.  Maybe volunteer to provide a meal occasionally.

Though we all need help sometimes, we know there are seasons and events in life when some of us need more and others have more to give. Isn’t it wonderful how that works out? Let’s get together. No matter which side of the situation we’re on, let’s be prepared.

 Day after day men came to help David, until he had a great army, like the army of God (1Chron 12:22   NIV).

Father, make us both humble and bold as we care for our loved ones. Let us not be proud, thinking we can do it all alone. Neither let us be fearful or ashamed of asking for the help we need. Thank You, Lord, for your faithful guidance.