The Hardest Things — Mood Swings

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

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.

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. 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 extremes 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.

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 — The Beginning

One of the hardest things for a caregiver to do immediately after a diagnosis of Alzheimer’s is concentrate on today’s challenges.

Most people discover slowly that a relative has Alzheimer’s . Symptoms begin to emerge, and we wonder; then they’re gone and we think maybe we imagined them. Symptoms show up more often, and we’re afraid it really is Alzheimer’s; but some days are still normal, so we tell ourselves it’s just signs of aging. Eventually, however, our worry becomes real fear. Symptoms come and stay longer. New ones appear. We try not to panic. And whatever emotions we’re experiencing as we watch our loved ones change, we can be pretty sure they’re feeling the same things, but with an intensity far beyond ours.

If we’re lucky, the person we’re concerned about decides on her own to see the doctor. If not, we may have to do some persuading—even persuade ourselves, because no one wants to hear the doctor say “Alzheimer’s.” Sooner or later, the doctor is consulted. Please note: Sooner is always better, because maybe the symptoms aren’t caused by Alzheimer’s. Maybe the doctor will find evidence of a different illness, one that’s treatable, and we’ll wish we had investigated earlier.

But if the doctor does say Alzheimer’s, we feel the shock of a death sentence for our loved one. And, though we probably don’t acknowledge it, it feels like a ton of bricks has fallen on us. We’re broken; we can’t breathe; we think we’ll die if we can’t get out from under all the ways life is going to change now that a loved one has Alzheimer’s.

Fix it! we tell ourselves. Stack up all these bricks again, maybe in a new pattern, but stack them, every single one. Now! Fix this now!

So many decisions: can she live alone a while longer? When she can’t be alone, who will take her in and care for her? Or will someone move in with her? If it’s a family member, what will happen to that person’s job? How can someone work 40 hours a week and still be available to give Mom all the help she’ll need? How soon will she need care in an Alzheimer’s facility? How much will it cost?Whoa! Not all the questions need immediate answers. Yes, it’s true that we must acknowledge the big picture, face the reality of what will come and even begin to plan for it. But in most cases the truth is that, so far, only one brick has fallen. Or maybe a couple, even three. Yes, we’re hurt when they land on us, but we’re not buried. We can still think and plan and make wise decisions, beginning with the issues our loved ones are struggling with right now.

That means maybe only the first question is of critical importance: if our loved one lives alone, is she safe to continue on her own for a while longer or does she need help, at least during the day? Other immediate considerations: Are there neighbors who can check on her? Is she eating well? Does she need help with cooking or cleaning or bathing? If another adult lives in the same house, how is his/her health? Is that person capable of helping?

We and, in most cases, our loved ones know the symptoms will increase in number and severity. Our loved ones may struggle to understand what’s happening to their minds, while we struggle to find a way to handle their worsening dementia.We try to plan, but it’s hard to see far into a future that grows dimmer, not brighter.

Even so:The things that matter first are today’s needs. If caregivers can stabilize the current situation—do what is necessary to manage the current symptoms and monitor or manage their loved ones’ overall well-being—everyone will benefit from taking the time to accept and adjust to the diagnosis.

I remember my affliction and my wandering…I well remember them, and my soul is downcast within me.Yet this I call to mind and therefore I have hope: Because of the Lord’s great love we are not consumed, for his compassions never fail.They are new every morning;great is your faithfulness”  (Lamentations 3:19-23 NIV).

Father, we trust You, even when all seems hopeless. Even as panic roars in our ears, You let us hear You. You tell us of Your compassion and Your love for us. Thank You, Father. “Great is Your faithfulness.”

Hair and Hats and Other Surprises

We simply never know.

Caregivers never know how a day will turn out. How an event will end. What effect any one action may have on a loved one with Alzheimer’s.

What we do know is that whatever affects our loved ones and their lives also affects us and our lives. We try to expect the best and avoid the worst. We think we know the difference.

Sometimes, though, we’re surprised.

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Even before Mom had Alzheimer’s, she wasn’t adept at cutting hair. As a child, I  always got down from her hair-cutting stool with bangs that looked like elbow macaroni. Mom would wet them with a comb dipped in water and then cut them again and again, trying to get the length even from one side to the other. After her scissors did their work, my naturally curly hair did its own thing: as the bangs dried, they curled up and gathered like macaroni artwork at the tip-top of my forehead.  “They’ll grow,” she always told me. “They’ll grow out.”

But after Alzheimer’s took over Mom’s life, after she virtually shaved her own hair with a pair of desk shears, Dad and I could only tell her the same thing: “We can’t do anything to fix it. Your hair will have to grow.”

We did buy her two hats. She liked them for a couple of days, then refused to wear them.  Soon they disappeared. Completely.  Many things Mom claimed to dislike disappear completely.

But within a couple of weeks, we saw the miracle. We witnessed the wonder that redeemed the Hair Massacre:

Mom’s self-inflicted haircut accomplished what all our meeting with and explaining to and questioning of doctors could not.

The family doctor assigned to my parents at the senior healthcare center had decided—out of a wealth of experience, I’m sure, but experience that did not include living with this patient and her pain and her moods 24 hours a day—that the symptoms he saw in his office were not those of a depressed or anxious woman. He decided Mom had Alzheimer’s.  And the symptoms he had not yet seen?  The ones Dad and I brought to him verbally and also written in careful detail?  He simply refused to consider them.

Until he saw the haircut. About two weeks after the Hair Massacre, Mom’s regular doctor’s appointment found us once again persuading and prodding her into his office.  Once again her angry and hostile behavior evaporated as we entered the medical building.  Once again Dad and I came armed with written questions and descriptions of Mom’s anxiety, paranoia, and anger. Once again we were prepared to plead for the doctor’s help.

We didn’t have to say a word. When the doctor walked in and saw Mom’s hair, his face registered instant alarm.

He looked at my father and asked, “Did she do this?”

Dad just nodded.

Mom sat smiling while the doctor asked Dad questions about her behavior. Dad answered patiently, and when the questions slowed, handed the doctor the sheets of paper we’d brought. Instead of stuffing them into the back of her file as he’d done twice previously, the doctor read them, asking for clarification or more details, taking notes. Then he told us he was prescribing a strong antidepressant. He emphasized it would do nothing to improve her memory or lessen her confusion, but it should relieve her anxiety and brighten her mood somewhat. He went on to explain that a geriatric psychiatrist came to this office once a month; he would set up a time for him to see my mother.

The turn-around that took place in the examining room was a wonder to experience. After a year of trying to get the doctor’s attention—to make him begin to treat my mother, not just the symptoms he witnessed—it was neither me nor my father who made him see the light. It was Mom and her haircut. Mom and what the doctor called her “self-destructive tendencies.”

I call it a miracle. Before she ever took one of the little pills that would prove so critically important in improving the quality of her life and ours, I knew it was a miracle that had gotten us to this point. Only a miracle could take the pain and madness of that afternoon in front of the bathroom mirror and turn it to some healing use.

Using heretofore undiscovered skills, I cut Mom’s hair from that day on, gently and playfully ambushing her with a burgundy plastic cape and tiny silver hair shears on mellow afternoons as she sat at the table chuckling at my father’s corny jokes. Those afternoons became more plentiful after she began taking the antidepressants.

And the doctor? The change in him was dramatic, too. He realized, I guess, that his short visits with Mom in his office weren’t giving him an accurate picture of her health. So, at last, he accepted input from all three of us. Finally he was on our team.

A miracle.

Remind me, Father, that Your love and Your power are tenderly working for Mom. In every circumstance, joyful or painful, let me see You here, with us, protecting, redeeming, again and again.

The Lord is righteous in all His ways and faithful in all he does. The Lord is near to all who call on Him, to all who call on Him in truth.   (Ps.145:17-18   NIV)

Hard of Hearing

Do they hear? Do they understand?

As we care for loved ones with Alzheimer’s, we’re desperate for them to feel our love, to be steadied by it, to feel safer because of it. But do they hear? Do they understand?

Sometimes we find it almost as difficult to get through to relatives and friends. Their understanding of what it’s like to live with Alzheimer’s can offer us both emotional comfort and practical help. But as they try to protect themselves from the pain that comes with a close-up view of Alzheimer’s, do they really hear and understand?

Keeping our fear and frustration and pain bottled up inside can damage our own health, both mental and physical.

The first step is knowing we need to speak up. Then it’s up to us to make certain someone is listening—someone we trust, someone who will make the effort to understand. If we can’t find such a person in our circle of friends or family, we can go to an Alzheimer’s support group.

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Ever felt like yelling “Is anybody out there?”

Yes, I see people, I talk to them, but are they listening?

Dad, for instance. He hears only what he wants to hear. If I say “Mom took her pills just fine! No problem,” I’ll usually get a grin from him. That smile tells me he got the message. But a few days ago, I told him “Dad, we must get disposable underwear for Mom. The regular ones won’t work anymore.” No response. I waited, but nothing. He neither agreed nor disagreed. It’s like his brain just refused to take in my words. Why? He knows Mom will resist the change. So it doesn’t matter how necessary the underwear is. Dad won’t hear of anything that will upset Mom.

Mom’s doctor, it would seem, is also deaf to my voice. I’ve spoken to him about Mom’s black moods. I backed up that conversation with written descriptions of her behavior. “She tries to hit other shoppers with her cart at the grocery store,” I wrote. “She growls at little children and smiles when they cry. At home, she slams her fist against the wall or the furniture. What if she starts hitting my father instead?”

I expected the doctor to address our concerns when we brought Mom in for her appointment. But nothing. No talk of depression or extreme moodiness, no questions to Mom about symptoms, no discussion with me and Dad about possible causes. Nothing at all until the very end of the appointment, when the doctor finally asked, “Mrs. Bailey, are you depressed?”

Mom smiled. “Oh, no, Doctor.”

He smiled back at her, said he’d see us in four months, and left the room.

Easiest to explain but hardest to bear is Mom’s faulty hearing. If I tell her “I love you” and she hears, and she knows what that means, wouldn’t she say “I love you” back? Or smile? Wouldn’t I at least see some warmth in her eyes? No. Alzheimer’s has robbed her of understanding and trust. And robbed me of the ability to erase the anger on her face or the fear I see in her eyes.

So I talk to You, Father. I listen for Your answers.

I pray as I buy the new disposables. You suggest I take all the old underwear out of Mom’s drawer and put these in their place. Yes! Having only the new kind to wear, and finding them just where she’s always found her underwear, might keep her from fighting us so hard.

I ask You for patience and make another appointment with the doctor. You tell me I’ll have to speak up, make myself heard. Yes, I should have done that last time. I pray for courage for myself and enlightenment for the doctor. You remind me You’ll be there, with the doctor, with Mom, with all of us.

I confide in You, confess my pain that Mom can’t understand me. I ask for a miracle, and follow Your prompting to continue talking to her. On the good days, I remind her of happy times we had when I was a little girl–the funny expressions I used and the silly games we played. I tell her I love her and I’ll be right here for her, like she was there for me. I expect no response, so her sometimes-smile is always a surprise, a delight I can carry forward to other days. I know the smiles are Your gift, to Mom and to me.

Thank You, Father, for always hearing my prayers. Whether I’m complaining or praising, whining or rejoicing, You listen. When I can’t find the words to pray, You supply them. Your answer is always help and strength. May my words carry those gifts to others.

“But certainly God has heard me; He has attended to the voice of my prayer. Blessed be God, who has not turned away my prayer, nor His mercy from me.”  Ps. 66: 19-20  (NKJV)

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)