What If…the one you’re caring for is injured or becomes seriously ill?

The What-Ifs of Alzheimer’s, those panicky thoughts and questions that pop into your head as you go through your days as a caregiver, can steal every tool in your caregiving arsenal: your energy, your strength, your confidence, your creativity. The key to getting rid of the anxiety is to replace it with a plan. Today we consider, “What if the loved one you’re caring for suffers a major injury or becomes seriously ill?”

I confess: this is a question that didn’t keep me awake at night. Why? Mom had always been healthy. She was a physically strong and active woman until depression and Alzheimer’s began stealing her life away.*

Perhaps because the disease attacked her mind so ferociously, I tended to minimize the effects it had on Mom’s body. Alzheimer’s affected her appetite, her willingness to get exercise, her hygiene. Yes, I saw. Yes, I was concerned. But my concern translated to fixing those problems. I couldn’t fight the tangles of protein in her brain, but maybe I could entice her with healthier food options, persuade her to walk with me a bit more, even bathe with her if that would get her into the tub. I knew that, minus any other fatal disease, Alzheimer’s would inhibit her brain function to a degree that would eventually cause her death. But I didn’t consider that, in the meantime, the effects of the disease on her body could shorten her life.

Even when I arrived at my parents’ home early one morning and found Dad trying to help Mom up off the floor in their bedroom, I wasn’t overly concerned.

“Does something hurt, Mama? Where do you hurt?” I asked. I touched her knees, her hips, her ankles. “Here? Here? Here?”

She smiled. “No.” And then, “I can’t do it.”

Dad and I had grown accustomed to Mom’s occasional inability to do what we asked her to do. Sometimes she just shook her head to signal she couldn’t open her mouth—unless we offered her a potato chip. Or she couldn’t get out of her chair to go to the bathroom—“I can’t stand up”—but her legs worked just fine to make an excursion to the coffee shop.

On this day, since Mom hadn’t had anything to eat or drink since the night before, I started there. I brought a straight-backed chair into the room, helped her onto the chair and into fresh underwear and clothes, and got her some orange juice. Then she wanted to go back to bed. So we helped her lie down, grateful she was dressed and had some nourishment.

Later that evening, she was still lying down, still in the same position on the bed. We could see no injury; she said again that nothing hurt. We called the doctor, then called an ambulance. Two days later her broken left hip was replaced with a new one made of titanium. But after the surgery, every rehab session was like the first one all over again. Mom remembered nothing from one session to the next. Eventually she refused even to try. One month and one day after she broke her hip, Mom died.

In our situation, there was little we could have done to change the outcome of the injury. Because Mom couldn’t do the rehab, with or without the surgery to replace her hip she would have been bedridden. She died—with Alzheimer’s, because of Alzheimer’s—of complications from being bedridden.

Still, while we weren’t able to prevent her death, there were issues we could have tackled in advance that would have made the time after her injury easier for everyone—especially for her. The information listed below will, I hope, help you to consider in advance some critical decisions you may one day have to make in a hurry.

• Because Alzheimer’s impairs your loved one’s ability to find the correct words, determining how he feels, what symptoms he’s experiencing, can be challenging. Accurate diagnosis of any illness, and therefore treatment, becomes much more difficult.     A primary care physician who is experienced in treating people who have Alzheimer’s is a treasure.

• As Alzheimer’s takes away their good judgment, it can be harder to convince our loved ones to eat nutritious foods and get sufficient exercise. Weakness and lack of balance can cause accidents and injuries.      Getting a professional aide in to help your loved one with exercise and hygiene is a good investment in terms of health and safety. As the disease progresses, you’ll need to be more and more alert to your loved one’s safety.

• As Alzheimer’s steals the willingness—and, eventually, the ability—to cooperate, recuperation from an illness or injury is more difficult. Rehabilitation of muscles and limbs may be much harder to achieve, or even impossible.   My experience tells me that any treatment requiring repetition of movement or speech will be difficult and perhaps impossible for someone with advanced Alzheimer’s to accomplish.

• Issues such as diet, sleep patterns, and patient cooperation make even the prescribing and administration of medications for an Alzheimer’s patient more complicated. Caregivers may have difficulty achieving the proper manner and scheduling for giving medication, and possible side effects will be more difficult to monitor.     Again, having a doctor who is familiar with the impact of Alzheimer’s on a patient is an immense help to caregivers.

• A sudden illness or injury may necessitate not only hospitalization, but also moving your loved one to a professional care facility for a time. My father and I were shocked when we were told Mom would be released at noon the following day but she could not go home. She would have to be placed in a nursing facility. I had done no research on professional facilities—what was available, where she would get the best care, what we could afford, what would be closest and most convenient for us to visit, etc. We were able to gain another 24 hours before Mom was released, but the surprise and stress and rush to make arrangements that would so deeply impact both my parents’ lives took a huge toll on our whole family.     There is no substitute for doing your research into care facilities before the need is anywhere in view. You may never need to make that choice, or you may end up with weeks to decide, or you may have only hours. Having a couple of options to choose from will free you from worry in the present and panic in the future.

• The time to transition from nursing care to hospice care can arrive suddenly, with little or no warning.     While being “prepared” for that eventuality may seem impossible, knowledge of what hospice is and what it isn’t, understanding how it can benefit a patient and family, and consideration of whether the concept of hospice care fits into your family’s caregiving philosophy—those things will help you if hospice care is suggested for your loved one.

A comforting answer to “What if my loved one with Alzheimer’s experiences a serious illness or injury?”  is this: We’ve thought about that. We’ve looked at many of the issues we need to consider. We’re aware of the options available to deal with those issues. We can always ask for help. We’re never alone. In short, we know we can do this.  

Yes, you can.

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*NOTE: Depression is a subject that’s treated in various other postings on my blog. Because it is such a huge complicating factor to Alzheimer’s, I encourage you to get more information about it. I’ll discuss in greater depth my own experience with how depression teamed up with Alzheimer’s to affect my mother in a new post to appear early in 2018.

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 And the arms of his hands were made strong by the hands of the Mighty God…by the God of your father who will help you, and by the Almighty who will bless you with blessings of heaven above….   (Gen. 49:24-25    NKJV)

Father, help us do our best for those we care for. We rely on Your strength, Your wisdom, and Your love for us and for our loved ones. Knowing You are always near makes us stronger, wiser, more loving. Thank You, Father.

 

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What If…?

The what-if’s of caring for a loved one with Alzheimer’s can defeat us before we even start to fight. They can be overcome—knowing the truth of that statement is the first step to victory—but defeating them requires action.

We’re all familiar with what-if’s. They pop up all the time, it seems. What if I get lost? What if I have a flat tire? What if I oversleep? What if…? What if…? What if…?

What if something bad happens?

Caring for a loved one with Alzheimer’s is difficult enough without entertaining the what-if’s. If you allow the Alzheimer’s what-if’s to get a foot in the door, they’ll suck all the air out of the room. Your caregiving creativity will faint from lack of oxygen and the confidence and determination that get you through your day will melt and run down your back like sweat.

Yes, it’s hard to escape fear. The extreme unpredictability that goes along with Alzheimer’s produces thoughts that can range from “What if Mom won’t get in the car to go to the doctor today?” to “What if I get sick? Really sick? Who’ll take care of Mom then?”

How do we turn those thoughts off? Well, we can’t just push them out of our heads. What we must do is replace them with other thoughts. In this case, we replace the negatives with positives, the doubts with certainties, the fears with strategies for action.

In short, we plan.

Plan. I know from experience that’s easy to say and hard to do. Deciding in advance what you’ll do in a particular situation is especially challenging when you’re dealing with a disease like Alzheimer’s. Symptoms vary widely. There’s no dependable time-line for progression of the disease. And each person experiences Alzheimer’s in an absolutely unique way. So where can a caregiver even begin to plan?

Actually, the starting point is simple to determine:

You start with what is. Right here, right now. Keeping your mind occupied with solving the challenges of the present can turn fearful thoughts into a feeling of accomplishment.

And don’t forget to watch for opportunities to laugh. Mom trying to chew with her dentures in upside down began as a mysterious problem and ended with laughter and a potato chip snack. Thinking and talking about good memories, short or long term memories, is better than imagining disasters.

For the larger questions and situations we anticipate will come up in the future, we engage in more formal planning. First determine the issues that must be planned for. Then study the information you find on the topic, talk to people who have knowledge and experience in each area, and come up with a list of options. Alzheimer’s caregiver support groups are an excellent source of information. You’ll meet people there who are facing or have already faced the situations you’re planning for. You’ll find candid discussions, information based on personal experience, practical advice and suggestions. In addition, there will be a trained group leader who can direct you to even more helpful resources.

Perhaps you’ll be able to rank the options in order of your preference, perhaps even determine exactly what you think is best to do. But at the very least, when the issue comes up and it’s time to take action, you’ll have a list of options.

Information is the best defense against the what-if’s. In the weeks ahead, I’ll be writing about some of the issues I faced as my mom’s disease progressed, things like the extra complications Alzheimer’s adds to other illnesses, legal documents you may need, the decision on if and when it’s time to consider admitting your loved one to a professional care facility, hospice considerations.  Listing those subjects here makes them seem cold and clinical and clear-cut. They are none of those things—instead, they’re intimate and emotional and confusing. But as you think about them, and as you read and hear how others in your position have dealt with them, you’ll find yourself putting your own head and heart into your own personal caregiving journey. The panicky “What-if’s” will give way to deliberate consideration of wise options for the one you love and care for.    

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How long must I wrestle with my thoughts and day after day have sorrow in my heart? But I trust in your unfailing love; my heart rejoices in your salvation.  I will sing the Lord’s praise, for he has been good to me.  (Ps. 13:2,5-6 NKJV)

Dear God, time is your creation. Protect us as we travel through it, holding tight to the hands and hearts of those we care for. Protect us from fear and doubt and panic.  Remind us of your unfailing love–help us revisit the many, many times you have held us up and helped us move forward. Give us Your wisdom to see what matters, deal with what is, and plan for what will be. In Jesus’ sweet name we pray. Amen.

 

 

 

 

 

 

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.

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.

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?

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.

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.”

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.

 

Just the Facts, Please

The only way to look at Alzheimer’s Disease is straight on. Unblinking.

Face reality.

Not easy. Especially in the beginning, the disease lures us into false visions. The good days look just fine. “Normal.”  Difficult times? It’s easy to tell ourselves they’re caused by a misunderstanding of some kind, or the aches and pains of getting older.

But the illusions last only so long—would that we could predict exactly how long!—before we can no longer ignore the reality of decline. At that point, we begin to feel as though we’re flying by the seat of our pants. Barely managing to keep the lifeboat afloat. Walking a tightrope in the dark…without a net. We navigate by instinct, bail as fast as we can, and slide ourselves across the chasm with a bravado born of blindness—the darkness hiding not only what lies below but also what looms ahead.

We hunger for information. Information is power; power gives us some level of control; and we long to gain control. But Alzheimer’s doesn’t come with a navigation system or weather forecasting or safety nets. There is no uniform set of symptoms, no universal timeline, no advance notice of sudden changes. Pinning down the facts, just the facts—the who, what, when, where, and why—of Alzheimer’s is a seemingly impossible task.

First we look to science: What signs should we look for? Any treatments on the horizon? Any cures?

But eventually—and always too quickly—we’re just searching for ways to get through each day. We want to know more about how to help our loved ones feel safe, stay connected, and live at their best—today. Here, definitive answers are even harder to come by, because the challenges of living with Alzheimer’s are unique to each person—as unique as his or her personality and experiences.

Is there no answer then to the question of when to take away the car keys? No answer to what does sundowning look like or how to handle wandering? Well, if we look at Alzheimer’s and caregiving factually, no, there is no one answer to those questions.

Realistically speaking, though,  we know there ARE answers. There are helps. Some we’ve seen. Some we’ve read about. THE answer for everyone? No. But options, YES! Looking realistically means letting go of the idea that there’s only one right answer to each question. Looking realistically means we can look at the WHOs instead of the WHO; the WHATs instead of the WHAT; the WHENs and WHEREs and WHYs instead of expecting a single, uniquely correct, factual response to our questions.

And looking realistically means that even though none of us has all the facts, we can share the information we do have.Our next five posts on this blog will do just that. We’ll explore each of those five issues: the WHOs, WHATs, WHENs, WHEREs, and WHYs of Alzheimer’s. We’ll be looking at each of the topics subjectively, dealing not with statistics but with common experiences. So we can learn and share.

Many questions and many answers make for many options.

Caring for a loved one with Alzheimer’s is a generous and loving but demanding and strenuous challenge. That’s a fact. But it’s also a fact that we need not face that challenge alone.

“Ask, and it will be given to you; seek, and you will find; knock, and it will be opened to you.” Matthew 7:7 (NKJV)

Lord, You are the source of our hope and our help. Please remind us that we belong to an army of caregivers, each of us fighting the same battle, all of us searching for the same answers. Help us help others as You help us all.

Are We Fighting FOR or AGAINST?

In the battle we wage for our loved ones with Alzheimer’s, we are not powerless.

No,  we can’t protect them from the disease.   We can’t slow it down.    We can’t stop it. If our battle is against Alzheimer’s, we cannot win.

But what if, instead of fighting against Alzheimer’s, we fight for our loved ones?     That’s a completely different war. We can win that war.

“Fighting for our loved ones.” What does that mean?  It means helping them live as long as possible.   So what does that look like?

 

Dad wants to take Mom on an overnight trip, a drive down to the hill country to see the wildflowers. Bluebonnets, winecups, prairie paintbrushes! But I know spending a night in a hotel room would frighten and confuse Mom to the point of disaster. So I suggest a short drive to some nearby bluebonnet fields. We take sandwiches and eat in the car. It’s good: Mom is relaxed, looking out the car window, chewing her egg salad with serene deliberation. In Dad’s opinion, though, the flowers are a bit sparse. So after we eat, I turn the car toward home. Once there, we take cold drinks out to the back yard and sit in the shade, where we admire Dad’s petunias and periwinkles and coneflowers and the little yellow blossoms on his tomato plants. Victory!

Christmas decorations and brightly wrapped packages cause Mom to ask endless questions. Her shuffling feet show us these sudden additions to the décor are making her nervous. So we back the tree into a corner and put the gifts in the closet for a while. But later we find a funny little motorized tree that we bring to the kitchen table. Only a few inches tall, it revolves, playing carols and shining with tiny multicolored lights. Mom’s not sure about it ’til Dad talks to her, very softly, telling her—the story of the first Christmas tree? No. He’s telling her about the technology that makes the lights glow and fade and glow and fade. And gradually she relaxes. She even smiles. Victory!

Mom has finally had to go to a nursing facility. She’s bedridden with a broken hip, unable—mentally or physically—to do enough rehab to keep the new hip joint in place. Mom’s not talking much, but I’m grateful she seems unfazed by the move from the hospital to yet another unfamiliar place. Dad, on the other hand, is heartbroken. His greatest wish remains unchanged and unfulfilled: he wants her with him. He expected to bring her home from the hospital; instead, she is in another “home.” He will never be happy, he thinks, without her. But the next day, my sister arrives with a small lamp and a comfy chair and a radio, which she promptly tunes to the “oldies” station. And less than a week after the sadness of moving day, Frank Sinatra is serenading Mom while Dad drinks the coffee the lunch room ladies give him every day. Not home, but comfortable. And together. Victory!

Our weapons in the battle for the lives of our loved ones are not complicated to operate, but it does take some practice to learn to use them in this particular war.

Patience—to withstand the onslaught of questions and complaints. Planning—to ease transitions and nip difficulties in the bud. Creativity—to find new substitutes for old habits and favorite activities. Gratitude—to encourage us to accept the help others offer. Determination—to keep us steady in the face of constant change. Optimism—to persuade us that, no matter what new pain Alzheimer’s inflicts, we will find a way to keep our loved ones OK.

And most effective of all, love—to convince us to fight, not simply for our loved ones’ survival, but for their lives.Lord, we can accomplish nothing without You, but with You, we can do everything You call us to do. Thank You for helping us bring Your abundant Life to our loved ones.

“Take my yoke upon you and learn from me, for I am gentle and humble in heart, and you will find rest for your souls. For my yoke is easy and my burden is light.”      (Matthew 11:29-30  NIV)

A Different Kind of Gratitude

Thankfulness that  what-might-have-been  wasn’t  is a different kind of gratitude.

Most of us express it from time to time. Something bad happens and we say, “Oh thank goodness! It could have been so much worse!”  Nothing good has occurred, but we’re thankful anyway.

Relief in the face of difficulty is still relief. Ask any Alzheimer’s caregiver.

But first give us time to regain our balance. A diagnosis of Alzheimer’s is like a punch in the stomach. It knocks the breath out of patient and caregiver alike. The shadowy present turns dark and the future fades to black.

Yet, life goes on. We adjust our vision to what is. We alter our expectations for the future. We adapt to a new normal, because we must.

Life goes on, and with the help of our faith and our friends, we begin again to be grateful for it. Nothing changes for the better…except our perspective.

Our loved ones need us in ways neither we nor they ever imagined, but we’re able to help them.
Conversation becomes more one-sided, but we learn how to reassure and comfort both our loved ones and ourselves with our words.
We sometimes feel overwhelmed with the weight of caregiving, but we learn to ask for help and to accept the help we’re offered.
Smiles from our loved ones are fewer, but those smiles—the ones on their lips and the ones we see in their eyes—bring us more joy.
We mourn that we can’t restore our loved ones to the lives they once lived, but when they can no longer anticipate the new life they are moving toward, we anticipate for them for them, we prepare, and we grow. We, in ourselves…we grow.

Relief in the face of difficulty is still relief.

For the help we can give loved ones and the care we can take;
For the words still between us, spoken and unspoken;
For the smiles we can give and the ones we can see and the ones we only feel but believe in nonetheless;
For the growth we experience through helping our loved ones;
For softer hearts and stronger hands, deeper faith and truer hope and love received through giving love;
Lord, make us truly thankful.

“We give You thanks, O Lord God Almighty,
The One who is and who was and who is to come,
Because You have taken Your great power and reigned.”  (Rev. 11:17  NIV)

Father, there may be different kinds of gratitude, but You are the one Source of all blessings. Give us the faith and wisdom to recognize Your good gifts in all their forms and disguises, and remind us always to thank You.

Making Assumptions

Making assumptions can be a good strategy for caregivers. Why? Because making an assumption will lead us to try something, take some kind of action that just might improve life for the ones we care for.

So many times in a day I was baffled by my mother’s actions. Or her words. Or the expression on her face. I could try to guess what she needed or wanted and come up with a lot of possibilities. But then I spent time trying to decide which possibility was the correct one. And as the clock ticked on, Mom either got upset because I wasn’t helping her, or she said—by word or action—“Never mind. Just forget it.”

My guessing game left us both unhappy.

But what if I had assumed? “Assume” carries the idea, not simply of guessing, but of acting on a guess. And where our loved ones who have Alzheimer’s are concerned, trying to do something for them is almost always better than standing around worrying about what they want.

A simple example:
Dad, Mom, and I walk into a large discount store. She’s pushing a shopping cart and I’m right beside her. Dad goes ahead of us with his own cart.

Usually Mom and I sit for a while in the coffee shop while Dad roams the store. So I gently steer the cart toward our regular table. Mom gives me an angry look. Asking her what’s wrong gets me no response. So I try again to turn the cart. This time Mom hisses, “No!” Before her temper is fully engaged, I stop to investigate. Her shoe isn’t untied. She’s not trying to sit down. Her hands aren’t in her pocket searching for a tissue. She’s just staring straight ahead. So I look that direction—and see a large display of poinsettias. They’ve arrived just in time for Thanksgiving.

And I assume that’s what Mom wants to see. Rather than ask her, I simply steer the cart in the direction of the flowers.

The closer we get, the bigger Mom’s smile grows. We walk around and around the large display, circling the blooms of red and pink and green and cream, some glitter-sprinkled, and all stretching their graceful necks above gold and silver foil collars.

After Mom’s admired and sniffed and pointed for a few minutes, I see her shoulders start to droop and assume she’s getting tired. So I start talking about our favorite table and the hot coffee we can enjoy there. And soon we’re there, sipping our coffee, Mom pointing toward the flowers again, me talking about each color, the three sizes of pots, and gold and silver ribbons.

I could have asked, of course. “Mama, do you want to see the flowers?” In the absence of a reply, I’d likely have gone on, “Or do you want to look at the popcorn tins? Or walk down the produce aisle? Or go find Daddy? Or….”

But on that day as on most days, Mom either couldn’t or wouldn’t have answered. The frown on her face would grow deeper with each question. So, knowing that almost any pleasant action is better than another question, I made an assumption and started moving. If I had found my assumption was false, I could have made a different one and moved in a different direction.

There are, of course, two other possibilities to consider:

Maybe Mom didn’t know what she wanted; maybe her reactions had more to do with a difficult mood than a specific desire. In that case, steering with my shoulder and my body, I’d have led her over to sit down or outside to wait in the car.

Or perhaps I had no idea what Mom wanted to do. What then? Well, I could still try all the likeliest possibilities, and sooner or later the activity would tire her and we’d just sit and wait for Dad.

The thing to remember is that making an assumption leads to some kind of action. For the caregiver, doing something feels better than standing around wondering. And for those with Alzheimer’s, our actions, even trial-and-error actions, are easier than questions. Even if what we end up doing isn’t what our loved ones had in mind, all our attention is focused on them. We’re touching them, talking to them, smiling at them. In Mom’s case, all of those gentle realities were less threatening to her than a question she couldn’t answer.

For me, doing something was progress. Finding out Mom would eat cranberries when nothing else pleased her, seeing that sometimes she wanted me to help with the left shoe first instead of the right—making discoveries like those helped me to see that I wasn’t just watching and waiting with her. I was helping her live a life, her life, in spite of Alzheimer’s.

He will feed His flock like a shepherd; He will gather the lambs with His arm, And carry them in His bosom…. Isaiah 40:11 (NKJV)

Lord, we ask you to guide our actions with our loved ones. Show us the possibilities, the opportunities we have to help them continue to live here on earth until You show them the infinite beauty of life with You.
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The Hardest Things — Withdrawal

On the list of issues caregivers find hardest to deal with, withdrawal is one of the most challenging. If a loved one begins a sentence and suddenly finds she can’t come up with a word she needs, she’ll probably hesitate to speak up next time. If she asks a question and is told she’s already been given the information she wants, many times in fact, she may decide to live in ignorance rather than ask questions. When she sees a familiar face in a family gathering but can’t identify the person by name, much less relationship, it’s easy to understand why she might retire to a corner.

Because it’s so easy to imagine why someone with Alzheimer’s would shrink from social interaction, it’s difficult, at least at first, to see how to keep them connected to family and friends.

One of the first things I learned as a caregiver had to do with this very issue. Soon after my mother began displaying symptoms of dementia, experience convinced me that keeping her as involved as possible in the current moment was beneficial. Her mood was more stable and her mind less confused when we kept her attention focused on the activity around her. But I watched her interact less and less day by day.

So what can we do to keep our loved ones “present” in our lives – and their own – for as long as possible? Here are some suggestions.

Talk to – not around – your loved one.   As Mom lost the ability to carry on conversation, I realized Dad and I were prone to talk around her. Sometimes, eyebrows raised, she leaned forward in her chair, looking at us, smiling broadly when she caught someone’s eye. I thought she might need something, but when I asked she shook her head. Did she have something to say? No. She kept smiling but said nothing.

I tried to remember for her: what did her conversations look like? Before Alzheimer’s, a wink, taps on my knee under the table, and “secrets” whispered in my ear were trademark facets of a conversation with Mom. So as Dad and I talked, I smiled at her, winked, and sometimes whispered comments to her. And it worked, at least sometimes. She stayed with us instead of retreating to her couch. She smiled when we smiled, frowned when our voices got more serious, and sometimes even interjected a comment.

Talk simply.   In the middle of a conversation with Dad on the economy, I’d take a break to ask Mom a simple question, like “Do you like my earrings?” Sometimes she answered. But even if she didn’t, I continued to talk directly – and only – to her. “I wasn’t sure they’d go with this color, but I think they’re okay, don’t you?” I learned not to say too much at one time; Mom tended to lose track and get nervous. I also learned to brace myself for her sometimes unkind or critical replies. But often such an interruption to my talk with Dad reaped sweet rewards: a smile, maybe a pat on the hand, sometimes even that “connected” look in her eyes.

As far as possible, stick with the familiar.   The more familiar the surroundings, the people, the activity, the more comfortable your loved one will be. For Mom, being at home eating a meal with Dad, and maybe my sister and me and our husbands, was clearly easiest for Mom to enjoy. Eating a meal with me and Dad at the super-center was good, too. Mom’s comfort didn’t extend far beyond those boundaries.

Pets are good.   If you don’t have a pet, the onset of Alzheimer’s probably isn’t the best time to get one. But if your family already includes one, you probably know what a help they can be. My parents had Charley-Dog, a usually scruffy but sometimes quite handsome silver miniature poodle. Charley was a sweet constant in Mom’s days.

  

He offered warmth and affection without making any demands on her memory or requiring any cooperation from her. He could make her smile when nothing else worked. Even when she refused to speak to me and Dad, Mom could always interact with Charley.

And keep in mind that even if your pet makes no noise and eats no food, it still offers your loved one unconditional love.

If someone lives long enough with Alzheimer’s, their virtually complete withdrawal from the world around them is inevitable. But there are ways to keep them “with us” longer. Yes, in this area as in most issues associated with Alzheimer’s, we’ll be operating on a trial and error basis: maybe this way will work, maybe not; maybe it won’t this time, but it might next time. Still, in my experience, the effort is well worth the expenditure of time and creativity. I strongly believe that the chance to express herself in an easy way, with a nod or a yes or no answer, let Mom feel some power. I think it helped her maintain her place in the family.

Though I have fallen, I will rise.
Though I sit in darkness, the LORD will be my light (Micah 7:8 NIV).

You are our strength, Lord. You show us the way when all seems lost. You keep us trying when we might give up. Bless our loved ones, Lord, and inspire and enlighten our efforts to help them.

 

 

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.

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. 

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.

Are We There Yet ?

Most caregivers hear them every day: questions. Or rather, a question, asked repeatedly, with only minutes or even seconds in between. We give answers, but the answers don’t help; they’re either rejected or immediately forgotten. Caregivers may get used to this phenomenon, but dealing with it never gets any easier.

Mom’s questions usually dealt with something that made her anxious.  “Where is the car? Is it safe?” Or “Did you pay the light bill?” Or “Do we have enough money?” At best, her litany sounded like what I used to hear from the back seat of the car: “Mom, are we there yet? Are we there yet?”

The hardest of Mom’s questions, however, had to do with “going home.” She would look at me with complete trust, her eyebrows raised in anticipation of her wish being granted. “Are you going to take me home now? I want Mama. Can we go home now?” As Alzheimer’s took more and more of Mom away from us, I armored my heart with thicker layers of protection. I made it hard and heavy as granite. But each time she gave me that look of sweet expectation and asked me to take her home, I felt the rock crack and another piece of it fell away.

So how do we answer when our loved ones ask for this impossible thing?  Well, first we can think about what they really want. In my mother’s case, I knew she wasn’t referring to the physical structure where she and Dad had lived for almost fifty years; we were in that home. Yes, it’s possible she didn’t recognize it at that particular minute, but Dad was always with there and she never lost knowledge of who he was. Perhaps she would have remembered her childhood home if we’d taken her there, but somehow I don’t think so.

I think Mom wanted a feeling, not a place.

“Home” is a word that carries powerful feelings. Maybe it makes us think of safety and security, maybe just a place to sleep and eat, maybe a place of danger and pain. I think Mom realized at some level that this house where she lived now was a place dominated by confusion and fear. The man she knew and, I believe, still loved couldn’t make it comfortable for her. Though he took loving care of her, he also tried to make her do things she didn’t want to do. Neither he nor I could answer her questions and when she didn’t understand what we were saying, she was afraid.

But the home of her childhood seemed to carry no threats. Mom had always spoken of her mother as gentle and loving. My experience from childhood to early adulthood is that my grandmother and Mom shared absolute trust and devotion.

And that’s what I think “going home” meant to Mom: getting back to a place where she was sure she was loved by people she could understand and trust.

I’ve heard other caregivers voice the same kind of heartbreak I felt: anguish that I couldn’t take Mom back to her childhood; sadness that I couldn’t explain to her why it was impossible to go back; and despair at my inability to make her feel safe and secure today.

But gradually I found there were things I could do to help her when she asked about home.

I showed her pictures of houses and asked her what her house looked like. Was it big? Did it have a tree in front? Was the house white? Simple yes or no questions, posed slowly, one at a time, would sometimes distract her from insisting she had to go there. The wording of the questions gave her words she could use to answer me.

I talked about my grandmother, repeating things Mom had told me. “She came to the United States on a ship, right? And she read books to you at naptime. Did she like tea? Or coffee?” At times it seemed to me Mom remembered the things I talked about. But even when she didn’t, I think at least some of my comments and questions found tiny niches in her brain where they could settle without confusing her.

Handling these difficult questions about a home our loved ones cannot return to is like many other aspects of caregiving: it’s easier when we approach from the positive side of the subject.  

We can look at pictures and smile and tell old stories that seem new to our loved ones. And in our hearts we can remember we’re not alone. Other caregivers face what we’re facing, feel what we’re feeling. Of course, the biggest encouragement for all of us is the glorious knowledge that one day our loved ones will be home. We’ll all be home. Safe and secure. At last and forever.

“In My Father’s house are many mansions;if it were not so, I would have told you. I go to prepare a place for you.And if I go and prepare a place for you, I will come again and receive you to Myself; that where I am, there you may be also”   (John 14: 2-3  NKJV).

Father, thank You that we live out of the firm belief that one day You will bring us home again. Even though our loved ones may not understand that truth, let them see and share the comfort it brings us.