Depression and Alzheimer’s

“Depression is never normal.”  

Not even for someone with dementia.

In the most recent series of posts, we’ve been spotlighting some “what-ifs”: the sudden questions that can blindside caregivers as they contemplate what challenges the future might hold. Today, however, we’re taking a side trip to look at the issue of depression and the impact it can have on a loved one with Alzheimer’s.

According to the Alzheimer’s Association, it’s not uncommon for people with Alzheimer’s to be depressed, especially in the early and middle stages of the disease. In fact, the Association says, “Experts estimate that up to 40 percent of people with Alzheimer’s disease suffer from significant depression.”

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And yet, “depression is never normal.” Shortly after I became Mom’s caregiver, I heard those words from well-known Dallas-area geriatric psychiatrist Dr. David Crumpacker. He was addressing a group gathered in a comfortable public room at an assisted living facility. The subject was Alzheimer’s.

Speaking for myself, the fact that 40 percent of people diagnosed with Alzheimer’s become depressed doesn’t surprise me. But Dr. Crumpacker’s words did surprise me. “Depression is never normal.” Not even for someone with Alzheimer’s? No, not even for someone with Alzheimer’s.

What does that mean? Why did the doctor make such a point of saying that, even when someone is diagnosed with such a cruel disease as Alzheimer’s, depression shouldn’t be considered a “normal” consequence?

Because, unlike Alzheimer’s, depression can be treated. And available treatments, the Alzheimer’s Association says, can lead to “significant difference in quality of life.”

And that’s information caregivers should act on. If you even suspect the person you’re caring for is depressed, pursue a diagnosis. As with virtually everything related to the changed behaviors that accompany Alzheimer’s, the first critical step for a caregiver is letting the doctor know.

You’re probably aware that Alzheimer’s can complicate the diagnosis and treatment of other illnesses. That includes depression. For one thing, the two illnesses share some symptoms, such as isolation, loss of interest in activities and hobbies, confusion and impaired thinking. And the cognitive impairment our loved ones experience may make it more difficult for them to describe their feelings and symptoms. Because of this, the Alzheimer’s Association says, “It may be helpful to consult a geriatric psychiatrist who specializes in recognizing and treating depression in older adults.” But caregivers can begin by talking to the primary care physician.

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Don’t assume that, because he or she knows your loved one has Alzheimer’s, the doctor will automatically know the issues that most dramatically affect your loved one’s health and quality of life. Moods or behavior you observe that concern you should be brought to the doctor’s attention. I emphasize this because, as a new caregiver, I wrongly assumed the doctor would take the lead. I made the mistake of thinking, “The doctor knows this disease. He knows all the important topics to be discussed, all the important problems we’re encountering in caring for Mom.  If he doesn’t bring it up while we’re here in his office, it’s not really important.”

I was wrong. But I was fortunate. The results of my mistake could have been far more serious than they were.

In the next post, I’ll describe how I learned about the effects of depression on someone with Alzheimer’s. But for now, the facts are clear:

  • Depression is never normal.
  • Depression is not uncommon in Alzheimer’s patients.
  • Depression can be treated.
  • Treatment for depression may lead to significant improvement in quality of life for the one you care for.

I’ve experienced that shift from dark to brighter; I pray you can, too.

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Why are you cast down, O my soul? And why are you disquieted within me? Hope in God, for I shall yet praise Him….   (Ps. 42:5  NKJV)

Father, be with us as we care for our loved ones. Help us to see what we need to see, and then do what is necessary to protect them. Thank You that we are never alone.

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.

bird open mouth

“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.

snowy bluebird

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.

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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.

 

Words: A Matter of Timing

As valuable as words may be in maintaining a calm attitude in those with Alzheimer’s, words can also make a bad situation worse.

In the beginning, I was certain I could make everything ok for Mom: explain away her fears, talk her down from imaginary ledges, even spin reality to suit her mercurial moods. It was a matter, I reckoned,buddy-birdsof being kind instead of threatening and accommodating instead of bossy.

 

But, to put it succinctly, I was wrong. My explaining and talking and spinning did little to help Mom find peace once she’d lost it. On the day she responded to my encouraging talk by throwing a chair in my direction, I learned that persuasion was not a caregiving strategy I should rely on.

As in many issues related to caregiving, when it comes to using words, timing is all-important. For example, quiet small talk about familiar things could distract Mom while we sat in a doctor’s waiting room. But on a difficult day, if Mom said no to leaving for an appointment, trying to persuade her did more harm than good. My words were very likely to turn her flat refusal into an all-out battle. A physical one. Mom couldn’t throw that chair hard enough to hurt me, but she did persuade me to leave her alone about going to the doctor.bluebird-fight

Another example: Sometimes Mom would sleep late, get up without our help, and skip the bathroom stop that was so critical to getting a good start on the day. I would gently take her elbow to lead her to the bathroom, but on some days she simply refused to go. She planted her feet, jerked her arm away from me, and said “No” in a voice that threatened to wilt the leaves on the ivy plants in the window.

So I’d try a different approach. In dread of a loud, angry day, I became too determined to make Mom happy. I’d offer juice, toast, a bath robe to keep her warm. Maybe a cup of tea?

In effect, I was only increasing her anger. My words-words-words, though meant to accommodate her wishes, were actually putting more pressure on her. Her confusion expressed itself in still more anger. Often Mom left the room to sit alone on the couch. And I was left to contemplate my failure.

bossy-bird2It took a while to shut me up, but gradually, as all caregivers do, I learned from experience. I found that using words to keep Mom comfortable was usually effective. But using words to make Mom happy when she wasn’t? No. To talk her into doing something she didn’t want to do? No. To make her believe I was doing what was best for her? No. At those times, words were worse than ineffective; they were fuel for Mom’s flame.

The solution turned out to be simple: I did the opposite of talking. When Mom said no, I backed off. I waited. And then I tried again. Beyond checking on her every few minutes with a smile but few words, I left her alone. I prayed she would find the kind of comfort she most craved, and I would sense any of her unspoken needs. When I went back to her, I always brought up the troublesome subject as if it were the first time we’d talked about it. Sometimes it took a while, but, with few exceptions, Mom eventually agreed to what we needed to do.

Yes, a lot of time could pass while I waited for Mom. Still, even if it made us late to an appointment, waiting was my only option. I would never use physical force, unless she was in danger. I did learn to make appointments later in the day. And I didn’t hesitate to reschedule if that became necessary.

Two more pieces of advice from one caregiver to another: In time, I ceased worrying about other people so much—their schedules, what they might think about how Mom looked or acted. And I gave up trying to keep everyone happy. It was never a good idea in the first place.

soaringDoing what was necessary to keep Mom in her life as long as possible became my major goal. With that goal in mind, I did my best to put my fear and dread away. We tend to create what we focus on; I made myself focus on peace and expect the best.

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And the Word became flesh and dwelt among us, and we beheld His glory, the glory as of the only begotten of the Father, full of grace and truth.  (John 1:14  NKJV)

Father, we thank you for sending Your Word, Jesus, to redeem us. Through Him, we accept Your constant companionship. May we use Your grace and Your truth to help our loved ones through this earthly life until they behold Your glory their heavenly home.

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.

are-you-ready

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.

 

No Time to Hide

Family members and caregivers who attempt to deny the signs of Alzheimer’s in a loved one will inevitably discover the cruel truth: hiding from Alzheimer’s doesn’t work. hide-and-seek-gameAlzheimer’s always wins the game of Hide (the symptoms) and Seek (to keep living as though nothing is wrong).

Why would we try to keep our loved one’s illness a secret?

Denial—it’s the first step in the grieving process: deny the reality of an event or situation that we simply find too painful to face. Because we know the magnitude of the changes Alzheimer’s will bring, not only to the person affected but also to everyone close to that person, many of us try to overlook symptoms for as long as we can. Even when we’re finally unable to ignore them, we can steadfastly refuse to consider Alzheimer’s. “It’s stress,” we tell ourselves. “Fatigue. Maybe old age.”

For months, neither my father nor I would even say the word “Alzheimer’s.” Not to each other; certainly not to anyone else. And as long as the doctor didn’t say it, we reasoned, we didn’t have to believe it.

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When the doctor did finally make the diagnosis, it came almost as a relief to us. Hiding from reality is exhausting.

Even then we kept Mom’s illness a secret. Why? Embarrassment. When I was a child, Dad had watched my grandfather die a slow and difficult death, from what people at that time described as “senility”—in my grandfather’s case, a particularly ugly form of senility. But when Mom’s doctor looked at her medical history, he told us Granddad probably suffered from Alzheimer’s.  That’s when Dad vowed he would never let anyone know Mom was sick “that way.” Yes, eventually he did tell people she had Alzheimer’s, but only after months of making excuses and inventing far-fetched stories to explain her behavior or her absence from family gatherings.

There was a time when many people felt as Dad did. Spouses and family were ashamed of the changes the disease wrought in their loved ones. Even today, when it seems almost everyone knows someone affected by Alzheimer’s, many families opt to stay “in hiding” rather than take their loved one out of the house. A patient who refuses to bathe or tend to other matters of personal hygiene is difficult to live with at home; in public, the sights and smells that accompany Alzheimer’s can be humiliating. Erratic or hostile behavior can be frustrating at home, but it’s even more difficult to manage in public. At home, sudden mood changes charge the atmosphere with tension; in public, such changes can be frightening.

under the deskBut we repeat: hiding Alzheimer’s—or hiding from it—doesn’t work. Efforts to deny it will end in defeat. Attempts to keep it under cover are sure to fail. Alzheimer’s symptoms and behaviors will not be ignored.

And, of course, they shouldn’t be! Because maybe it isn’t Alzheimer’s. Maybe it’s a different, treatable disease. No matter what the cause of symptoms, delaying a diagnosis out of fear is always a mistake.

If it is Alzheimer’s, hiding won’t get our loved ones the help they need. They need all the relief medical science and family and community can offer. They need us to be alert for the times and situations that make life even more difficult for them. We ourselves need support, physical and emotional, from friends, extended family, counselors, physicians, professional caregivers.

open your eyesAlzheimer’s isn’t pretty. It’s not amusing, not interesting, not easy to look at,
even from a distance.

But those who have the disease are still here with us. To see them, we must look at Alzheimer’s—or, more accurately, look through Alzheimer’s. Yes, as time passes, it gets more difficult, but if we keep our eyes open, we will reap the rewards, for ourselves and our loved ones. We can claim every good day—or hour, or minute—for them; every easy smile; every instance when our love and service overcome their fear and confusion.alzh sttrongFor God has not given us a spirit of fear, but of power and of love and of a sound mind.   (2Tim:1:7   NKJV)

Almighty Savior, You have told us we need never fear. Remind us, please, that You are our Protector in all things at all times. May we hide in You, using Your strength and care to serve those we love. Thank You, Jesus.

The Hardest Things — Mood Swings

The next item on our list of the hardest things for Alzheimer’s caregivers to deal with: mood swings.

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Though in the beginning stages of Alzheimer’s there are good days and difficult days, as the disease progresses, the good times may shorten to hours. In one day, those with Alzheimer’s may experience occasions when their minds function well, interrupted by periods when they’re ambushed by symptoms like confusion, anxiety, or inability to find words. dadson

Our loved ones feel the shocks again and again: being told their questions have been asked and answered many times already; finding themselves unable to balance a checkbook or follow a recipe; hesitating with a telephone or garage opener in their hands because the device doesn’t look familiar any more.

Alzheimer’s doesn’t fire a warning shot. It just attacks.

It’s no wonder, then, that our loved ones’ moods fluctuate, even in the earliest stages. The fear aroused by the onslaught of symptoms, the relief when symptoms go away—as sensitive as caregivers are to those feelings, the people we care for are immensely more so.

So…how to help them through mood swings? Here are four strategies.

1. Talk to them.
Early in the disease, our loved ones can tell us, more or less, how they’re feeling and why. Whether they choose to or not is a separate question. But even if they don’t, I believe it helps to talk to them.confusion woman And the best help we can give them is truth. Positive, affirming truth—it will help your loved one and you, too. You may or may not want to talk specifically about Alzheimer’s, but you surely can reassure them with matter-of-fact statements like:
• Yes, you get confused but I’m here to help you.
• I want to be here; I want to help you.
• You aren’t alone. We’re a team.
• We’ll be fine.
I found my mother’s reactions to those assurances usually matched the tone I used when I spoke. If my voice conveyed sadness or fear about the situation, I think she felt her fear or anger being validated. But if I spoke simply, and said the words as if they had always been the facts of our relationship, she caught my calm.

2. Agree with them.
It’s never beneficial to argue with someone who has Alzheimer’s. Our words won’t make our loved ones disbelieve their reality: they are certain the bath water is too hot, sure the dog ran away, positive someone stole the car. Instead of telling them they’re wrong, we do better to agree with them.

3. Demonstrate to them, in the most visible way possible, that we accept their reality. In other words, whether it’s perceived or real, fix the problem.
“Well, Mom, no wonder you’re upset. Let me test this water again/see what I can do about Charley-Dog/go check on the car.” Then do it. Stick your hand in the water and turn on the cold tap, even if only for a second. Go find the dog; bring him into the room, if necessary. Go outside to check on the car. When you return, you can say the absolute truth: things are okay.

4. Use distractions to capture their attention and direct it elsewhere.
As the disease progresses, the causes of change in mood won’t be as clear or reasonable. Distractions—maybe a new task, caring for a pet, food, a walk—may help to ease our loved ones away from the distractionextremes of negative moods. Use your imagination. You’re the best judge of what might calm frayed emotions or attract your loved one’s attention sufficiently to dispel bad feelings.

Two important notes:
If you don’t already have a pet at the onset of Alzheimer’s, this may not be a good time to get one. Things our loved ones perceive as new or different can cause them even more anxiety.
It’s important to keep the doctor aware of changes in mood and emotions. Depression is not uncommon in older adults, and it can add immeasurably to the challenges of Alzheimer’s. Moreover, depression can often be treated, giving you and your loved one better days and more of them.

If we were talking about a textbook patient, perhaps we could more readily think of ways to calm the fear or defuse the frustration. But these are people we know and love. Their pain and fear become ours, and sometimes we find ourselves in the swing next to them, flying forward with optimism, then backward to despair.

And of course we must bear in mind that what worked last time may not work this time. But, with the resilience of a caregiver, right after we accept that fact, we must insist that it just might work next time.

talk to them

Resilience. As dementia steals it from those we care for, we must stockpile it. We have to develop more and more of it, enough to fight the monster and keep our loved ones living well the life they have.

Though I walk in the midst of trouble, You will revive me… (Ps. 138:7 NKJ).

Lord, we know You are always here. Help us to be aware, not only of Your presence, but of Your very real assistance as we fight for the ones we love. May we be sensitive to Your promptings, knowing that You are able to keep them safe, to keep them living in the best ways possible, in spite of the cruelties of Alzheimer’s.

 

Begin with Trust…in Yourself

Everyone with Alzheimer’s has it a different way. The range of symptoms is wide. Not everyone develops all of them. And there’s no timetable for how fast or slowly the disease develops.

In addition, there’s no way to predict at what point the disease will reveal itself to outsiders. Depending on how much time we spend with them, how open they are about their daily activities, and whether they or a spouse or friends try to hide the symptoms, we may discover in the beginning stages of Alzheimer’s that our loved ones need care, or we may not find out until far enough along that we wonder why we didn’t notice sooner.

Given all the variables, how do we begin? Where do we start?

I discovered Mom had Alzheimer’s on a car trip I made with her and my father. Dad had been hiding her symptoms for a long time, but as we were together 24 hours a day, I witnessed the issues firsthand. Mom was absolutely incapable of deciding what to wear.  Ordering from a restaurant menu made her so nervous, she wouldn’t eat. She had major problems with incontinence. Some things I tried to pass off as the eccentricities of getting older. But when Dad and I told her she couldn’t go out for a walk alone–and barefoot–the severity of the symptoms couldn’t be ignored any longer. Mom screamed and kicked and hit us. It took both of us to get her to a sofa where she thrashed and fumed until exhaustion overtook her and she fell asleep.

Mom was still at the point where she had good days and bad days. The next day of our trip was miraculously good. Still, the introduction had been made. I looked Alzheimer’s straight in the eye—and panicked.

At home, as I talked to my husband about the shocking events, he said, “You’re talking like this is a crisis.”

I’m sure I shrieked my reply. “Of course I am! If this isn’t a crisis, what is?” A few minutes passed before I could take in his words. When I did, I realized he was right.

panic-or-calm-signpostWhat he was trying to tell me is that, no matter how hard I tried,  Alzheimer’s isn’t a crisis that, even with great expense of effort, can be dealt with and resolved. Instead, Alzheimer’s is a condition of life. It affects every facet of every day, for the patient and also for those who care for him or her.  It can’t be fixed and left behind like a bad memory. It moves in to stay.

Once I had taken time to let that reality sink in, reason and common sense made the next steps easier to find. I escaped the panic and sense of helplessness I felt in those first days, and began to, as the saying goes, just do the next right thing.

Here’s what I learned:

  •  I could not possibly do everything at once.
  •  But I could see the priorities; I could tackle them first. For example: Mom often wore the same clothes day after day, but what she wore was far less important than her health. So one of my first actions was to make an appointment for a complete check-up. Mom saw the doctor in clothes that were less than fresh, but I found out it was ok. The clothes-police didn’t even give us a warning ticket.
  • I couldn’t do it all.
  • I couldn’t do it alone, and I didn’t have to. I had a Helper with me every minute. And earthly assistance was abundant if I would search it out and ask for it.

 In other words, what I learned is that I could trust myself.

headed in right direction

Did I do everything the best way? Heavens no! In particular, I never learned to insist on having help. But everything that had to be done got done. And Mom lived as fully and happily as Dad and I could help her live…which made Dad and me feel happier than I ever imagined we could back in those first desperate days.

So, wherever you are in the caregiving journey, I urge you to trust yourself. You can do this. And ask questions. Ask for help. You don’t have to do it alone. You have more resources than you can imagine. One of them is right here in this blog. I’m praying for you.

God is our refuge and strength, a very present help in trouble. Therefore we will not fear,
even though the earth be removed, and though the mountains be carried into the midst of the sea…  (Ps. 46:1-2  NKJ).

Father, we know You are always with us. Help us trust in Your guidance and love and care, for ourselves and for our loved ones.. Trusting in You takes away our fear. Thank You, Father.

The Small Stuff — Part I

Alzheimer’s changes almost everything.

Caregivers can see the biggest changes easily. It’s impossible to miss the decline of abilities like making conversation, performing productive work, buttoning a shirt.

Other changes can sneak up on us. And, though they may appear small, they may eventually cause serious problems.

That simple knowledge can help us anticipate obstacles, give us more time to prepare for them, and thereby keep our loved ones safer.

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For Mom, it was her hair.

She likes it short. For over 25 years, she’s gone to the same little shop to see the same friendly hairdresser for the same simple cut and style. When Mom stopped driving a couple of years ago, Dad began taking her. He’d drop her off, go home, wait for her to call, and pick her up.

A few weeks ago, Dad waited an unusually long time for Mom’s call. She was outside the shop when he arrived. As the car door slammed shut, she began shouting. “I will never come back here. Ima Jean said I didn’t even have an appointment. She made me wait until she finished three other women before she even started my hair!”

Dad’s question as to whether Mom had actually made an appointment only made her angrier, he told me later.  Tiny alarms went off in my head. Should I have made the appointments? Should I have gone with her? Next time, I told myself. Next time I’ll go.

Next time didn’t come. Though Mom forgot many things in the next few weeks, she didn’t forget her promise. When I suggested we call to schedule a haircut, she glared at me. “I will never,” she repeated, “go back to Ima Jean.”

Neither would she agree to go to any other hairdresser. Persuasion didn’t work. My invitation to take her to lunch after a quick trip to my hairdresser didn’t work. Neither Mom nor Dad would agree to have someone come to the house to do Mom’s hair.

While I tried to come up with other ideas, Mom’s hair kept growing. I was lucky if she allowed me to wash it. When it brushed the back of her neck, Mom complained. When it touched the top of her collar, she raged, long, loud, and often. But just as long and loud and often, she refused to let anyone cut it.

The problem was on my mind again this morning. The answer came as I drove into my parents’ driveway: I can cut Mom’s hair. I’m no stylist, but surely anything will be better than the shaggy locks that so infuriate Mom. Why didn’t it occur to me before today? No matter. I walked into Dad’s cluttered kitchen certain I had come up with the perfect solution, for now and for the future.

Mom was dressed and drinking tea with Dad at the table, which would have been a happy sight except for the floppy brown hat sitting on Mom’s head.  Mom never wears hats.

I fixed my own tea, making small talk, asking questions Mom didn’t answer. Usually that means she’s angry, but today she didn’t seem so. She just sat with a smile that struck me as – what?  Sad?

“How do you like your mother’s hat?”  Dad asked. The light words he spoke didn’t match the heavy look in his eyes. His question filled every corner of the room with tension.

“Well, yes!” I grinned, hoping bright teeth would cover dark foreboding. “That was a surprise this morning!”

Now Mom’s face brightened a bit. “Daddy got this for me,” she said, reaching up to touch the brim of the hat. She shifted in her chair, almost stood, then sat again.

Even now, in the quiet of my bedroom, I have trouble believing what I heard and saw in the next minutes. Two things, however, have fixed themselves—immediate, solid, permanent—in my mind.

One burns: I must watch Mom closer, even in the “little things.” I must weigh her needs by her standards, not mine.

The other soothes: I am not the only one looking out for Mom. The Lord is watching. Always. Protecting. Always.

Lord, help me fight the guilt that’s smothering me now. But more, immeasurably more, thank You for Your care for Mom. And please show me how to learn more about her needs and about keeping her safe.

“Though the mountains be shaken and the hills be removed, yet my unfailing love for you will not be shaken…” says the Lord, who has compassion on you.   (Isaiah 54:10   NIV)

Move Forward

Let your eyes look straight ahead, fix your gaze directly before you.  Make level paths for your feet and take only ways that are firm.      (Prov. 4:25-26)

Still in my son’s little apartment in Colorado, I sit in the recliner, close my eyes, and try not to listen as Mark settles my parents in his bedroom.  He’ll sleep on the floor tonight.  I’ll be on the sofa.

I want quiet and calm as I go over the events of this day: Mom’s confusion and hostility when we arrived, my panic and fear as we fought to keep her inside the apartment, and the miracle of the lovely evening we just spent with Mark—the laughing, happy, normal evening.

Normal. I could use a little more of that, please, Lord.

When Mark emerges from his room, I see him holding the Lord’s answer in his arms: laundry. The basket he carries is full to overflowing with towels and sheets, T-shirts and running socks and blue jeans. He almost loses the whole load when he bends to pick up the detergent.

Peace can be found doing ordinary things.

“Got any quarters, Mom?” Mark doesn’t even have the good grace to look sheepish, just grins and jerks his head toward the door. “Almost midnight.  Laundry time.”

The door closes behind us and I know I must tell him. But how? We walk together past a line of doors and windows that open on rooms where, I imagine, life hasn’t changed much from yesterday to today.

In the darkest hours of the night, in the steamy little laundry room at the end of the apartment sidewalk, I talk to Mark. While the washer churns a super-size load of his jeans and flannel shirts, I lean against the coin-operated dryer and describe the nightmare we lived while we waited for him to come home from work.  I can’t hold back my tears.

When Mark was a little boy, he never admitted to crying. He maintained his eyes were leaking. They leak again tonight.

I’m still talking when the buzzer sounds on the dryer. While I fold and stack, Mark stands and listens. My words tumble over each other like rocks pushed downstream in a fast-running river.

At length, the torrent slows and Mark has a chance to speak.  He asks if he should drive us back to Texas. Suggests I start making notes for when we talk to the doctor.  “You’ll see someone right away, Mom, right?  If you’re going to fight this, you need information.” 

No trace of panic in his tone or his words, just that look in his eyes I recognize so easily.   I saw it when he climbed his first tree, wrestled with his older brothers, filled out college applications—that look that saw past  the circumstances, the obstacles, the pain, or whatever else stood between him and his goals.  I find strength in that look. 

Thank You, Father, for showing me the way forward. We’re not stuck in darkness; we can move toward the light, one goal, one step at a time. Help me focus my efforts on what is possible. I know I can get information. With information I can find out what kind of help we need. Once I know what we need, I can go after it. I ask for courage and determination and insight as I begin this quest.  With You, no mission is impossible.  

Lost, but Not Alone

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Is this Alzheimer’s?

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

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

I’ll deal with tomorrow tomorrow.   

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