The Hardest Things — Hostility

On the list of the hardest issues for caregivers to cope with, hostility due to Alzheimer’s is one we hope we never have to face. But we can face it. We just need to be prepared.

be prepared 2Loss of the ability to exercise good judgment and control impulses leads some Alzheimer’s patients to become verbally and even physically hostile. If that is the case with your loved one, you must be prepared to keep both of you safe—yourself and the one you care for.anger with caregiverFirst, we must understand once again: not every patient experiences every symptom of the disease. Perhaps your loved one is argumentative at times—or unfriendly or irritable or demanding—but not hostile. Perhaps he or she displays none of those traits, but instead is cooperative and easy-going most of the time. If so, we rejoice with you! If, however, you as a caregiver have experienced hostility from your loved one, you already know the importance of being prepared to handle it appropriately.

The mention of “hostility” in an Alzheimer’s patient can suggest many things. Some people with AD become angry—or, if they’ve always had a difficult personality, angrier. Some use language they never used before, or fuss about the news on TV. But the word “hostility” implies an attack, and it’s that aspect of Alzheimer’s patients’ behavior we’re talking about here. Attacks may be verbal or physical, but all are directed toward a person, not a situation.

My parents were devoted to one another. They argued occasionally, but seldom for long. They always appeared to maintain their respect for each other, even when they disagreed. But after Mom got Alzheimer’s, she was quick to express her anger at my father, without the niceties. She called him “the big man” in a derisive tone, informing us she wasn’t afraid of “the big man,” because “the big man” was stupid. (“Stupid” was a word never heard previously in our home; my mother didn’t allow it.) When Dad told Mom he loved her, he eventually stopped inviting her to reply in kind. His “Don’t you love me, honey?” was usually answered with “I do not.” Or worse, an ugly smile, a stare, and stony silence.

Such verbal assaults can wear on caregivers, on their hearts and spirits and even their bodies. My father reacted to them with a despair he didn’t need to voice; it was visible as his face paled and his body slumped so low in his chair, finally all I could see were his hands clasped around his head. He ate little on those days, and sometimes drank too much. He spent hours sitting with his head in his hands, “too tired,” he said, for the exercise and activity he used to crave.

head in handsI knew I had little chance of changing Mom’s mind or attitude. It wasn’t her heart speaking, after all, it was her disease. I couldn’t make her say or do anything to lift Dad’s spirits, heal his heart, or give him back his appetite for life. So I had to do it. At least I HAD TO TRY. Whether it is ourselves or another loved one who is injured by verbal abuse caused by Alzheimer’s, we must fight the consequences as best we can.

How?

With my father, the thing I didn’t do was talk. Not at first. I let some time pass. I didn’t deny his pain or even interrupt it; I knew he needed to feel it and I needed to acknowledge it.

After a few minutes, I used touch. A hand on his shoulder, a pat on his arm, maybe a hug with my front to his back could usually distract him from Mom’s ugly words and bring his attention back to me. I fancy I represented “normal” to him. Or at least the chance for normal. Hope.

Finally I spoke what he already knew. “She doesn’t realize what she’s saying. She’ll be telling you she loves you by bedtime, Daddy. Let’s have some dinner; then maybe you’ll feel like taking a walk. Remember–walking always seems to help.” I made sure he recalled we’d been through these times before and survived, to laugh again and see Mom laugh with us.panic-or-calm-signpostPhysical hostility is a different situation. We’ve said that arguing with an Alzheimer’s patient is worse than useless, and yet there will be occasions when you’ll have no way to accommodate your loved one’s desires—or no way to accommodate them safely. At those times, you’ll need to be prepared to take the action necessary to keep yourself safe as well as the one you care for. Even if you are strong, someone with Alzheimer’s can cause significant injury with an unexpected kick or shove.

My father and I had to exert physical pressure with Mom only two or three times during her illness. We were surprised to discover two things that appear to bolster the strength of those with Alzheimer’s: anger and frailty. Mom’s anger made her utterly unafraid and absolutely fierce in mind and spirit. At the same time, her frailty made our struggle more difficult because we were so afraid of hurting her.

helpIf you feel you would be unable to physically restrain your loved one if it became necessary, be prepared with a plan. Note that Dad and I had a distinct advantage over many caregivers: there were two of us. You’ll want to have a neighbor or friend or family member you can call for immediate help. Or, if all else fails,be prepared to call the police for assistance. Perhaps such a situation will never arise, but you’ll be able to care for your loved one with more confidence and calm if you have faced the possibility in advance and are prepared either to take action yourself or to get help.

You can keep yourself and your loved one safe; your local Alzheimer’s Association, your doctor, and your local senior center can help you get the assistance you need to resolve this problem.

Do not rebuke an older man harshly, but exhort him as if he were your father. Treat…older women as mothers… (1 Timothy4:1,2 NIV).

Lord, we ask You to keep special watch over us and our loved ones when pain threatens to overwhelm us. Please help us to be prepared. We trust You will guide and protect us if the time ever comes when we must restrain a loved one. We praise and thank You for being the great Comforter and our great Help in every situation.

The Hardest Things — Mood Swings

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

ok couple

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.

 

The Hardest Things…Lead to the Biggest Miracles

Amid all the challenges presented by Alzheimer’s, some things stand out as particularly difficult. They usually demonstrate that something else has been lost or some new indignity has moved onto the scene, meaning that we caregivers must help our loved ones live without the one and in spite of the other.

But if we can do that—if we can help our loved ones live, really live, even through the hardest things—we can defeat the hopelessness of Alzheimer’s.

Listed below are some of the biggest challenges I had to deal with as a caregiver. For now, we can simply name them. Starting next week, we’ll look at each one individually. We’ll see how we and our loved ones can survive each of them, and even all of them together. What is required is our determination to expect joy. And miracles.

dark tree

  • The beginning/acceptance/adjustment

A diagnosis of Alzheimer’s doesn’t have to be the end of living. Though at first it seems we must prepare for the worst, caregivers can learn to think and act differently. We can learn to focus on the positive, on capabilities instead of losses. We can learn to expect help and miracles from the Lord. We can learn that life with Alzheimer’s is still lived one day at a time, so the challenges of this day are all we have to deal with.

  •  Mood changes

Mood and personality changes often accompany Alzheimer’s. Some can be explained logically: irritability, frustration, and anger are natural reactions to the many kinds of confusion Alzheimer’s thrusts on our loved ones. If depression is also present, it can bring on sadness, hopelessness, and even more anger. We caregivers will come upon ways to help our loved ones navigate the sea of mood swings, but we must be looking for them, expecting to find them. Emotional help comes in many forms, unique to each individual. In addition, you’ll find that keeping your doctor fully informed is necessary and helpful.

  • Withdrawing

Someone with Alzheimer’s is likely to withdraw into silence in social settings and even at home with family. Difficulty recognizing people, inability to follow or contribute to a conversation, noise, a crowded room—many aspects of being with a group of people may make someone with Alzheimer’s uncomfortable. But again, if we look for them, we’ll find ways to help those we care for continue to participate in family life. These will be some of the most satisfying strategies we’ll bring to our loved ones.

  • Hostility

 Loss of the ability to exercise good judgment and control impulses leads some, not all,  Alzheimer’s patients to become verbally and even physically hostile. But you can keep yourself and your loved one safe; your local Alzheimer’s Association, your doctor, and your local senior center can help you get the assistance you need to resolve this problem.

  • Anxiety

When we don’t know exactly what is going on in the moment and have no idea what to expect in the future, it’s no wonder we feel anxious. Anxiety, though understandable, can be overpowering, mentally and physically. Both caregivers and those with Alzheimer’s are subject to it. The miracle is that we don’t have to surrender to it. Weapons are available to fight anxiety. We can learn to use them for ourselves and for our loved ones.

  • Incontinence

Eventually, those with Alzheimer’s lose the ability to control their bodily functions. Having to tend to loved ones in this situation is a painful reminder for caregivers that roles have changed. But if we act out of love in addition to simple necessity, we elevate the task and we honor our loved ones. And the miracle is that in the midst of that, our love grows.

  •  Hygiene

Alzheimer’s complicates hygiene. Tasks as simple as washing hands become demanding and exhausting. But we learn to do what we can. And we learn to ask for the help we need.

  • Isolation

At-home caregivers and their loved ones usually don’t have much company. Friends and neighbors are hesitant to visit; they don’t know when to come, what to expect, what to talk about. So caregivers get lonely. But we can tell others how we feel. We can learn to ask for what we need. When we do, we have more control over our situation.

  • Lack of Recognition

For many people with Alzheimer’s, the day comes when they no longer recognize friends and family members. Even those closest to them may become strangers. Perhaps they simply cannot call them by name, or perhaps they have no recognition or knowledge of them at all. Painful? Yes. But it doesn’t have to be tragic. The miracle is that even strangers may become friends.

bright treeThe hardest things—your list may differ from mine. But the point isn’t that certain things are so much more difficult than others, but that in a disease filled with so much pain, for the patient and everyone close to them, even the hardest things can be borne. Even the hardest things will succumb to miracles. And if we look we’ll see miracles every day.

Rejoice always, pray continually, give thanks in all circumstances; for this is God’s will for you in Christ Jesus (1Thessolonians 5:16-18  NIV).

Faith in You, Lord, is our surest resource. Even in the hardest times, we trust you will show us Your wisdom. We know you are always with us, and where You are, miracles abound.

Best Laid Plans

It’s great when caregivers have time to plan in advance for a challenging event. Although our plans don’t always work perfectly, thinking ahead helps us handle difficult times more calmly and effectively.

But Alzheimer’s has a way of blowing away our expectations. We plan for one set of obstacles and find we’re faced with others we never anticipated. What then? We simply do our best—that is, the best we can do at that moment .

New caregivers, take heart. Time and experience bring new skills. The more difficult situations we work ourselves through, the more we realize we can rely on our instincts and judgment. We find we can work for our loved ones with confidence, strength, and trust in a Wisdom far greater than our own.

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This trip with Mom to the doctor is a carefully orchestrated event.

First I made a plan, which, to my surprise, Dad readily agreed to. A few days before the appointment, we’d let the doctor know our concerns, not by telephone, but in writing.  I’d deliver the information to the nurse in person and ask her to have the doctor review it prior to Mom’s appointment.

We carried out the plan to the letter. A week ago, Dad gave me a sheet of yellow legal-size paper on which he had hand-printed a list of the issues that most trouble him: Mom’s confusion; her repeated questions; her frequent refusals to eat, bathe, take her medications. He also included her anger, saying that, although it’s usually directed toward him, it’s now occurring both at home and in public. He ended by expressing his opinion that Mom’s sadness and anger are indications she is depressed.

To Dad’s sheet I added a printout of a computer file I started soon after the Colorado trip. The file, titled simply “Mom,” contains descriptions of her bizarre behavior on that trip and documents how that behavior has intensified in the weeks since. Like Dad, I mentioned Mom’s hostility. I described how she slams her fist into the furniture at home and told of her more recent tendency to get angry with people she doesn’t even know. I included a description of how she aims her shopping cart at other shoppers in the grocery store, noting she hasn’t hurt anyone, but only because I’ve intervened. I mentioned her incontinence, saying I don’t know whether she’s no longer able to tell when she needs to go to the bathroom or simply chooses not to go.

Four days ago, I met with the nurse at the geriatric clinic. I gave her the envelope containing our notes and requested she have Mom’s doctor review the information before her appointment. The nurse assured me she would place the notes in Mom’s file.

Now, as I sit with Mom in the waiting room, Mission accomplished, I think. The facts are on the examining table, so to speak, so I’m sure we’ll get help.

Finally Mom’s name is called. On our way down the hall, we stop for her to be weighed. She’s all smiles as she steps onto the scales and then chats about the weather with the nurse who takes her pulse, temperature, and blood pressure.

When the doctor enters, Mom greets him with another wide smile, which he returns. Is that surprise I see in his eyes? “No need to get up on the table,” he says.  “We can do this right here in your chair.” 

With scarcely a glance to Dad and me, he listens to Mom’s heart and lungs. In the next couple of minutes he educates her on the value of exercise and she politely agrees to stop smoking. He mentions nothing about the notes I delivered, but I see the corner of a piece of yellow paper sticking out of the file beside him on a desk. I wait.

Finally he opens the file. After flipping through the pages stacked inside, he at last takes action on the information Dad and I provided…with a five-word question to Mom. “Mrs. Bailey, are you depressed?”

Mom looks at Dad, not the doctor. “Depressed? Oh, no. I’m fine. We’re fine, aren’t we, Daddy?”

Patting Mom’s shoulder, the doctor answers, “Good! See you in four months.”

Is that all? I want to scream. Is that all? Will you just watch for ten minutes, see Mom’s smile, hear her words, and dismiss the experience of the people who live with her all day every day? Is that all?

In the time it takes the doctor to gather his notes, turn to the door, grasp the knob, and turn it, my brain presents my choices.

Step up, speak out, make him listen. If Dad’s eyes blaze or he tries to interrupt, ignore him. If Mom gets upset, so much the better. The doctor can see it for himself. Isn’t that what you want?

No! Play it safe. Who knows what Mom might do if you make her angry? She might throw a chair, grab the needles, smash the equipment.  Just leave. Try again next time.

Silent, I watch the doctor walk through the doorway. I hear the door close behind him. I’ve chosen escape. Escape from the situation without doing anything to hurt Dad. Leave before the wild woman who lives in my mother’s body can make herself seen. 

Coward. I keep silent and we walk to the car. 

Until today I have utterly underestimated the extent of my father’s denial.  Mom’s confusion and questions, her anger and fear, the hitting and shouting and all her refusals of food and medication—all were apparently erased from Dad’s memory when she looked at him and said, “We’re fine, aren’t we, Daddy?”

His denial is maddening. And I’m incensed by the doctor’s casual “See you in four months.”  But I save most of the anger for myself. My fear infuriates me.

Four months. Four months. Next time I’ll be ready. I won’t rely on paper in a file. I won’t be intimidated by a man in a white coat. Four months from now, I’ll make myself heard.

Lord, I feel I’ve failed. I had the opportunity to get real help for my parents, and I let them down. I’m too ready to depend on someone else to see the hard facts and say the hard words. Remind me, Lord, to depend on You. I can do nothing without You and everything with You. Remind me, Lord, please: we can do it together.

“You will not have to fight this battle. Take up your positions; stand firm and see the deliverance the Lord will give you…. Do not be afraid; do not be discouraged. Go out to face them tomorrow, and the Lord will be with you.”   2 Chronicles 20:17 (NIV)

Family Ties

“I will be a Father to you, and you will be my sons and daughters, says the Lord Almighty.”   (2 Cor 6:17  NIV)

Despite my resolve, I sit here day after day, swallowing the words I should say. I try to swallow my anger as well, but it just won’t go down.

I’m angry with Mom, though I doubt she can control her wild behavior. I’m angry with Dad, though I know he’s afraid.  

Mostly I’m angry with myself.

Anger. It lives in this house. Mom’s anger dozes on the green couch, oblivious to the smells of urine and cigarette smoke that cling to the cushions.  Dad’s stares out the kitchen window, cursing the weeds in the lawn. Mine sits at the kitchen table, drumming its fingers on the vinyl cloth.

As I look at Mom now, I remember the scene just a few days ago: her eyes ablaze with rage over a comment Dad made about her hair, her hand slamming down on the table, hot coffee erupting from a cup and spilling onto the floor. That irrational behavior isn’t going to change on its own. In fact, it doesn’t take much for me to imagine that scene ending with someone burned by whatever hot liquid might be on the table next time.  I can even see the day when Mom might slam her hand against Dad instead of the table. 

Deal with that thought, I tell myself. Deal with that.

If only I could see these people—my parents—as strangers. Just an older couple I happened to meet. If they were anyone other than my parents, maybe I would take charge, with common sense, strength.

“Get your wife to a doctor, Sir,” I could say. “And if she won’t go, find a doctor to come to your home. She’s irrational. At times she’s out of control. She’ll hurt herself. Or you, Sir. It’s just a matter of time.”

I’d stop him when he claims she’s just tired, maybe depressed. “This goes ‘way beyond tired, Sir. And I don’t know enough about depression to say if it can cause behavior like hers, but I know she needs a doctor. Just waiting for something to change won’t help.”

At this point the older man might have his head in his hands. Or he might be staring at me, pain in his eyes, or fury. But I’d continue, no matter how sad or angry he looked.

“I can see what you won’t acknowledge,” I’d tell him. “I see how bad it can get. Your wife’s actions will hurt someone if you don’t intervene.”

Maybe he’d say, “I’m here! Nothing’s going to happen I can’t handle.”

But I’d keep the pressure on. “You can’t be with her every second. And even if you could, she fights you. I’ve seen it. What will happen when she hurts you? Worse, what will happen when your hands bruise her or your fingernails scratch her or when she fights so hard to get away from you she falls and breaks a bone? How will you feel then, Sir?”

By this time he might have tears in his eyes. Or he might turn and go out the door, slamming it behind him. Regardless, I would have said what needs to be said. He would have heard what he needs to hear.

But these people aren’t strangers. It’s my father I’d be talking to, my mother I’d be talking about. I am their child. The one who feared making waves, who always tried to please, who’s still programmed to accept her father’s words as fact, as law.

I am their child. But I have to be the adult here now. If anything can be done to set their lives on more stable ground, I have to do it.

God help me.

Lord, you know me. You know my parents. And you know Alzheimer’s. As I look at those three things, I see weakness, denial, and destruction. But when you look at them, you see hope. A plan. Miracles. Strengthen me, please, to see as You see and act according to Your inspiration. Remind me to expect miracles.   

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.