Tissues in Your Pocket

Most Alzheimer’s caregivers realize early on that we have little control over what any day will bring. Planning each day in advance may give us a sense of control, but so much of Alzheimer’s is unpredictable. Based on my experience, caregivers spend at least as much time reacting as acting.

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One of my mom’s major goals in life was to be prepared for anything that might happen to her or her family. I remember her purse was both tool box and first aid kit, containing a screwdriver, bandages, string, scissors, various nuts and bolts she had found on streets and sidewalks—once I even saw a fish stringer in there. But the things we used most often were the tissues she always carried. She stuffed her already bulging purse with them and stashed them in every pocket on any piece of clothing she wore, “just in case.”

“Just in case.” That phrase covers a lot of territory for caregivers. We can’t predict what might happen in the next few minutes, much less the next few hours. But…unpredictable doesn’t have to mean unprepared.

For caregivers, being prepared is a state of mind.

I wish I had seen that truth earlier. Instead, of all the emotions that rolled over me during my first weeks of caring for Mom, fear was predominant.

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Fear hung around long after shock left. I spent only a couple of weeks being surprised at things like Mom putting Dad’s shoes in the trash, or telling me how lovely the artificial flowers smelled at the grocery store, or accusing the neighbors of peeking into the windows. I soon learned such things were simply to be expected.

Anger lasted longer. I was angry at the disease, at my father for hiding it for so long, at myself for missing the signs, and, yes, sometimes at my mother who often seemed to enjoy the chaos she created. But after a while, anger became a motivator. My frustrations prodded me to look harder for cause and effect relationships I could use to smooth the rough road we traveled each day.

For example: I learned I didn’t always have to explain to Mom what I was going to do. Announcing I was about to brush her hair or help with her shoes often resulted in a barrage of “No’s,” maybe because she felt I was telling her what to do. So I began to say less and simply do what had to be done. When my actions were a surprise to Mom, it took a minute or two for her to puzzle them out. By that time the job was usually finished. Using the disease against itself lessened my anger and fueled my confidence.

Still, fear of catastrophe stuck around for a long time. I was afraid the time would come when I couldn’t control Mom’s anger and she or someone else would get hurt. Would I be able to get her to take her medications every day? What if I couldn’t make her get into the car? Or out of it?state-of-emergency

Adding to the pressure of my fear was the feeling I absolutely had to make things work. I had stepped into caregiving of my own accord. No one asked me to. Dad couldn’t do it alone, and he refused to allow a nurse or professional into their home. So, ignorant of what I would be facing, I just jumped in. But after only a few weeks, I began to question whether I could manage Alzheimer’s alone. I started each day with dread, praying for help, praying for a miracle.

And you know what? Miracles came. Not the sudden cure I hoped for, but miracles nonetheless. Little ones I almost didn’t notice at first, like a close-in parking space when we were running late to an appointment. There were big ones, too, huge ones like the doctor who finally found that Alzheimer’s wasn’t the only danger Mom faced: He diagnosed her severe depression and prescribed the medication that gave her, for a while, more good days than bad.

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In fact, so many miracles came my way, I began to expect them. On some otherwise-impossible days, Mom would at least agree to take her meds. When we were out of the house, I realized people seemed to sense her instability. I learned how to steer her away from situations that, I knew from experience, might provoke her anger. If she refused to get in the car, I postponed the errands and rescheduled the doctor’s appointments. If she refused to get out, I sat with her until she got tired of saying no.

Although some of the solutions worked pretty reliably over time, I knew no amount of advance planning could ever address the daily challenges of Alzheimer’s. But I was freed from paralyzing fear because I began to expect an answer in difficult situations. And because my trust was based, not on my power, but on the power and faithfulness of God, I stopped imagining disaster. Because I believed  the Giver of all good gifts, the Maker of all miracles,was on my side, I could think more quickly and clearly, come up with a way, find one more miracle.

As the Alzheimer’s progressed, Mom continued to pick up her tissues and put them in the pockets of the old green cardigan she wore every day. I took a few out every now and then, secretly of course, so she’d have room to add more. The day came, though, when it no longer occurred to her to pick them up. So Dad and I did it for her. Putting a fresh tissue, carefully folded, into her sweater pocket made us feel a bit more powerful in the face of Alzheimer’s. “Now, Mama,” I’d say. “Now we’re ready for anything.”

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For me, the miracles that carried us down the rocky roads of Alzheimer’s are like tissues I saved in the pocket of my spirit. There were so many problems, but so many more miracles. And each problem solved was a promise of more solutions to come.

I pray you fill your own pockets with confidence. Begin to expect miracles. Watch for them. And in the hardest times, remember the ones God has already sent. Each one carries His assurance: He is with you, to help you. He will never leave you alone.

With a pocket full of faith, we’re ready for anything.

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You will not need to fight in this battle. Position yourselves, stand still and see the salvation of the Lord, who is with you….Do not fear or be dismayed… for the Lord is with you.     (2 Chronicles 20:17   NKJV)

Loving Father, we know You are on our side. We know You can do all things. We know You want us to come to You with our fears and our needs. Thank You for fighting on our behalf. Even in the face of Alzheimer’s, Your constant love casts out our fear.

 

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Parenting Our Parents

An incident I witnessed on a vacation many years ago continues to shine a light on one of the hardest tasks of caregiving.

During our hike through a national park, our family stopped in a picnic area to have lunch. As I made sandwiches for my three young sons, I could hear wails from the picnic table next to ours.

“But Mom, it’s my money.” The little boy’s face was red; his eyes were swollen.

An older girl and another boy, siblings, I’m sure, looked almost as sad. They watched the mom as she said, “John, I know you worked hard for this money. But you aren’t taking good enough care of it. If I hadn’t seen it and picked it up, your allowance would still be back there on the counter in the gift shop. You can spend it, but I’ll carry it with me.”

I tried not to stare, but I couldn’t escape hearing John’s next plea: “But Mom! I’m old enough! I’ll do better. Please?”

monkey parent“Johnny,” his mom answered, and I’m pretty sure I heard tears in her voice, too, “I don’t want you to lose everything you worked for. If you lose it, all of us will be unhappy. I’ll take care of it for you.”

I remember how sorry I felt for Johnny. But I hurt for his mom as well. We want so much to make our children happy, but there are times when we just can’t. Sometimes we have to say no.

Since my children are grown now and have children of their own, I thought I was free from having to make those hard choices. I was mistaken. Like many caregivers, I had to step back into the parenting role again.

Parenting my parents.

Mom was in her sixties when Dad realized she could no longer balance the checkbook. Mom had always paid the bills; Dad took over that job, too. As pots and pans were scorched on the stove because Mom forgot about them, Dad became the cook. When he ran out of clean clothes, he started doing laundry. They went to the grocery store together; Dad did the shopping while Mom wandered up and down the aisles, stopping to look at greeting cards or artificial flowers or bars of soap.

Dad kept these changes to himself for as long as he could, but eventually Mom’s behavior became so bizarre it could no longer be hidden.

“Why didn’t you tell me, Dad?” I asked after one of Mom’s harder days.

“Now Katrinka, I wasn’t hiding anything. I figured your mama just wasn’t interested in her old routines anymore.”

Balderdash. You don’t raise your children or your parents without coming to know them inside and out. And I know that, inside, Dad was 1) afraid of the possibility Mom was ill, and 2) determined that if she was ill, he would keep their home running just as it always had. “Normal.” That’s what he wanted. The two of them living in the pink brick house, taking care of each other, as they had ever since they were married.

help when you need it

While they did stay in their home, “normal” became me spending my days with them in the pink brick house. At first I helped Dad take care of Mom. Later on, when macular degeneration rendered Dad almost blind, I found myself more often in the role of parent, mainly to Mom, but sometimes to both of them.

Remember when you put things like scissors and knives and matches away, out of sight and out of reach of your children? That’s one of the first things I did when I discovered Mom had Alzheimer’s. I hid anything I could imagine might cause her harm if she used it incorrectly.

And that was just the beginning.

Dad and I had to watch closely to make sure Mom didn’t turn on the range or other appliances. Once I found her using one of Dad’s screwdrivers to open a package of paper table napkins, so the tools were moved to a safer place. We no longer left Mom at home alone, even when she insisted she’d “be fine.” She would sit right where she was, she said, while I drove Dad to the bank or the post office. But I had to say no; Mom had to come with us. She didn’t cry like little John did. She became angry, shouting and waving her arms. We’d wait, ask her later if she’d like to go for a ride, and sometimes she said yes. When she said no, Dad and I postponed our errand.

Out of desperation, sometimes I treated Mom as I had treated my sons when they were children. I often bribed her with ice cream or lunch at her favorite café if she’d go to the doctor with us first. Sometimes I made up stories about the magical powers she would gain by taking the medications she didn’t want to take.

Like Johnny’s mother, I knew I had to take charge. Certainly Mom, and often Dad, too, simply weren’t capable of using good judgment when making choices and decisions. Mom, of course, was impaired by Alzheimer’s.

rabbits eye to eyeDad’s judgment was impaired by his love for Mom.

The no’s to Dad were always hardest. No, it wasn’t a good idea to plan a big party at a restaurant for Mom’s birthday. No, taking Mom camping “one last time” in their bright yellow tent might be fun for him, but not for her. No, I didn’t think it was wise to take a long trip in their travel trailer. No. No. No.

Like Johnny, Dad made promises. He promised to ask people to be quiet at the party. He would gladly pat Mom’s back ‘til she fell asleep in the tent. He was sure she’d love a trip in the trailer, but if she asked to come home, he’d bring her home, right away. He promised to tell me when he couldn’t see well enough to drive.

normalFrom Dad’s perspective, I’m sure it didn’t seem too much to ask for simple, normal life. How I wanted to give him just that! And I tried. But from my perspective, it was a struggle to maintain whatever modicum of normal we could hold on to.

Of course, Alzheimer’s was the problem. Both Dad and I tried to say no to Alzheimer’s. Neither of us was successful…except in one regard: somehow we managed to say no to the disease stealing all our joy. Specifically, I kept my eyes and ears and heart alert for the occasions when life felt like old times. I made sure Dad noticed on mornings when the three of us sat at breakfast with toast and tea. I rejoiced openly when we arrived home from the store and Dad and I put away groceries with Mom telling us what to put where. I prayed with gratitude as my husband and I watched Gunsmoke with my parents: Mom asking the name of each character, Dad answering her and then offering everyone something to drink.

foxesNormal.

As I held on to as many of the routines as I could, I also held on to my temper. Usually I was able to resist the frustrated tone that tried to creep into my voice; instead, I held on to the respectful attitude I had learned from my parents. There was no question in my mind that each of them deserved my respect as much at this time of their lives as they ever had.

Easy? No. Whoever said, “The hardest thing about everyday life is that it’s every day” spoke truly. And most caregivers recognize the words as an extreme understatement.

But let’s also be sure to recognize the bigger truth of caregiving:
As we work to preserve what we can of the “normal” life of the past, we’re also safeguarding—in the present—something even more precious: our loved ones’ dignity.

Children, obey your parents in the Lord, for this is right.  “Honor your father and mother,” which is the first commandment with promise: “that it may be well with you and you may live long on the earth.”   (Eph. 6:1-3 NKJV)

Father, help us to be patient with those we care for as You, Father, are patient with us.

The Hardest Things — Anxiety

The unknown is frightening. To all of us.
Just imagine how much of what is known becomes unknown for someone with Alzheimer’s.
And as caregivers, we have already seen how much of Alzheimer’s is unknown to us.
So there’s plenty of anxiety to go around. And seeing it, either in these words or in person, can be disheartening.

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But we don’t have to surrender to it. Weapons are available to fight anxiety.

In the early stages of Alzheimer’s, symptoms come and go. One day Mom knows exactly where her sweater is: where it always is when she’s not wearing it, lying across the back of the living room couch. A couple of days later, she looks for it “everywhere,” not even seeming to recognize it when she sees it on the couch. The next day, she’s able to grab it as we go out the door to breakfast. Mom doesn’t say anything to me or Dad about the confusion, but she’s tense now. Every day.

Later, when the symptoms are more serious and almost constant, Mom is upset about many more things. Anything she sees or hears may become cause for worry. A news story about a bank being robbed: “Is our money in the bank? I want to see it. Did someone get it?” Hail on the roof during a storm: “What is that? Who’s beating on our house? Someone’s trying to break in!” If she can’t find her sweater, she is certain someone has stolen it, telling us to call the police, louder and louder, until I put the sweater in her hands.

Still later, she understands much less of what she sees and hears. She doesn’t talk much anymore. But she still gets anxious occasionally. I can see it in her eyes, the expression on her face, the shuffling of her feet. I try to determine what’s bothering her: Is she hungry? Thirsty? Does she hurt somewhere? Too hot? Too cool? What does she need? Sometimes, with miraculous assistance from the Almighty, I’m able to find something, a change of some kind, that makes her face relax. Sometimes I can even see the tiniest of smiles, not on her lips, but in her eyes.

As for me and Dad, in the early stages, we’re continually trying to stay one step ahead of the symptoms. Continually surprised by new ones. Questioning whether this or that odd behavior really happened yesterday, because Mom’s totally normal today. We know something’s wrong, but we don’t want to upset Mom, so we pretend all is well. But the strain reveals itself in a tone of Dad’s voice, or a puzzled look on my face. As hard as we try to protect Mom from our anxiety, we’re not always successful.

Later, we are worn by the constancy of the symptoms. Mom gets upset so often, we’re on guard all the time. But even when she herself is relatively calm, Dad is exasperated by her repeated questions, her reluctance to eat, her lack of exercise. I’m worried about Mom’s incontinence, conscious of her dirty hands and hair, concerned about her hygiene in general.

As Alzheimer’s steals more and more of Mom’s awareness, Dad and I are more determined to keep her comfortable and well. And less able to do so. The difficulty in determining her needs causes us both anxiety and pain. Again we see evidence for our belief that Alzheimer’s is harder on patients in its early stages, but gets easier for them as they lose awareness of their situation. For caregivers, Alzheimer’s doesn’t ever get easier to bear.

Maybe you’re wondering about the statement we made in the beginning of this post:
We don’t have to surrender to anxiety. Weapons are available to fight it.
It’s true. Please keep reading.

known landscapeIn presenting ways to handle the anxiety and stress Alzheimer’s brings, we’re going to change the order of the presentation: we’ll address helps for caregiver stress first, before we look to helping our loved ones.

There’s a reason for that:

The caregiver is the most important and effective weapon against the anxiety of the one cared for. Helping the caregiver is absolutely essential to helping the person with Alzheimer’s.

The most effective way to deal with the stress of caring for someone with Alzheimer’s is talking. Talk to a spouse, a friend, someone you trust. Talk to someone in a support group who’s been in your shoes. Talk to a pastor or counselor. Just talk. Speaking about what you’re going through doesn’t change what you’re going through, but it can change your attitude and approach to caregiving. You have someone to share the experience with you. Even sharing only in words relieves the feelings of isolation and loneliness a caregiver may feel. You may find that friends, a counselor, a support group member may have suggestions you haven’t investigated yet. And just speaking your concerns, frustrations, and pain to a sympathetic listener somehow makes the burden seem lighter.

The next most effective weapon against caregiver stress is help. Bring someone in to stay with your loved one and give yourself a break. Bring someone in to help with bathing or cooking or housework and enjoy the support and the company they can provide. Seeing, understanding, and experiencing the truth that you do not have to do everything yourself will lighten the burden you carry, refresh your body and spirit, and make you a better helper for your loved one.

• And finally, do what is necessary to take care of your mental and emotional health, as well as your physical well-being. Caregiver stress and burn-out can cause serious and lasting medical problems. By all means, let your physician know you’re a caregiver. He/she can help you deal with the added stress on your body and mind.

What can we do when anxiety attacks the one we’re caring for?

• First, believe that you will find a solution. You will always find a way to defuse a tense moment. Reminding yourself of that truth will motivate you to keep trying, think creatively.

Listen as calmly as possible. Just let your loved one talk. Sometimes she will forget what she’s concerned about—or just get tired of talking.

Answer questions patiently. Again, creativity helps. Arguing with someone with Alzheimer’s never helps.

Use actions as well as words to show that all is well. Show your loved one a bank statement to reinforce your assurance that her money is safe. Explain what the statement shows; she may no longer understand it, but the confidence in your voice and the official-looking papers may give her a sense of security. Walk your loved one to the window so she can see the hail, or bring some inside for her to see and feel. After you find the missing item and show it to her, go to each exit door and click the locks, demonstrating that no burglars will be able to break in.
Employ distractions. Playing music or offering a snack or looking at photos or taking a drive—any distraction that doesn’t frighten your loved one may direct her eyes to something different, giving her time to forget her anxious feelings.

Try touch. Even when you cannot determine the source of your loved one’s anxiety, your touch may bring her calm or comfort or peace. Holding her hand or putting your arm around her shoulders or lying beside her in the bed may help. Perhaps rub lotion on her hands or feet. The sense of touch and the distraction of your actions may do what words and objects cannot.

Pray. Don’t wait until “nothing else works” to pray. Pray right away. Any time. Pray out loud or silently, but pray, knowing that you will receive help, and many times, you will see a miracle.

My soul finds rest in God alone…He is my fortress, I will never be shaken (Ps. 62:1 NIV).

Lord, make us aware of Your presence with us. Help us realize You are beside us, doing what we’re doing: working to help our loved ones. Sometimes, we find a way to bring relief to the ones we care for. Sometimes the only explanation for the relief that comes is Your power working for us in miraculous ways. But always, we can do nothing without You. Thank You, Lord, for being here.