Holding On

The last on our list of “The Hardest Things” for caregivers to deal with is loss of our identity. We have been someone special to our loved one; now we could be anybody.

Or nobody.pls stand by

People with Alzheimer’s, their own personalities long since stripped away by the disease, can eventually lose the ability to identify even those who are closest to them. Not just names are lost, but also faces and voices and the feeling of family or friendship. This effect of the disease arrives sooner for some patients, later for others. Those who escape it do so by virtue of dying before they experience it.

For the Alzheimer’s patient, all connections are dissolved. He or she is alone.

For the forgotten sons or daughters or spouse or friends, loss of identity in relation to their loved one is exquisitely painful. The caregiver has now become a stranger. In especially cruel cases, unknown loved ones and caregivers may provoke fear or anger in an Alzheimer’s patient. But even if caregivers are perceived to be kind and helpful, they’ve become kind, helpful strangers.who are you

One reader told me he is an only child, caring for his mother who has Alzheimer’s. She asks him repeatedly if he knows her son. He tries to tell her he is her son, but she doesn’t believe him. She continues to ask.

Perhaps you’re the spouse of an Alzheimer’s patient. You and your wife are together virtually every minute of the day, yet she never says your name anymore. There’s no glimmer of recognition in her eyes when she looks at you. The years you’ve been married appear to count for nothing now.

Maybe a faithful friend who visits your loved one regularly is no longer greeted with a smile, but with a blank face instead. The friend is heartbroken. She believes she’s of no help anymore.

When we’re no longer known by those we love most, the lack of connection leads to a lack of words, an emptiness that’s hard to describe. The person with Alzheimer’s is beyond the point of recognizing the loss. But the caregiver, the son, daughter, spouse, friend—these people suddenly experience what may be the most devastating pain inflicted by the disease: where once we were needed, special, able to touch the heart if not the mind of our loved one, now we’re invisible.

girl jacketIt’s easy to understand the caregiver’s thought that maybe now is the time to give up.

Fatigue and despair tell us, The road is too hard. The non-stop work doesn’t improve anything; it only brings you closer to the end. You can’t hide the pain anymore. It’s too big to carry. Surely someone else can do the job now. Your name means nothing to your Mom anymore. Anyone else’s face could take the place of yours; anyone else’s hands could do what yours do. You’re lost to your mother now. She’s lost to you.

But have we truly lost our connection with the one we’re caring for? I don’t think so. We just have to carry it on our own now. It’s up to us to hang on to it through the hardest times of Alzheimer’s. The person we’re caring for has been robbed of the ability to live out her identity, but she is still the person she was before Alzheimer’s. The relationship we had still exists; it’s just that now, only one of us is able to make the connection visible. The curves and angles, the highs and lows, the deep and the wide—one of us must keep them now for both of us.

mom and daughterSince any time is a good time to bring in help with caregiving tasks, now is perfect. Since it’s always helpful to share thoughts and feelings with someone who will listen with mind and heart, now’s a great time for that, too. It’s a fine time for a break, to get away for a while, to rest mind, heart, and body. I pray you do those things.

Because if you do, or maybe even if you don’t, you’ll be in a better position to see the real nature of your caregiving. The bigger picture. Perhaps at this point, with no more rewards of a smile, a few words, a pat of recognition, you’ll finally understand that the caregiving has been a gift. To both of you. Every facet of it has defined or reinforced who you are in relation to the one you care for. And you affirm the identity of your loved one, also. As long as you relate to her as a daughter, she is still a mother. As long as you care for him as your spouse, he is still a husband.

caregiverThough our loved ones have been robbed of the ability to live out their own identity, they are still God’s unique creations. When we’re with them, holding the essence of our relationships in our hearts and in our caring hands, the people we care for are real. They maintain their person-hood.

They live bigger than Alzheimer’s. And that’s a victory.

 But now, this is what the Lord says–he who created you…he who formed you…:”Do not fear, for I have redeemed you; I have summoned you by name; you are mine.”

Is. 43:1  NIV)

Father of us all, You know who we are. You made each of us unique. Help us as we guide our loved ones on their journey back to their true identities, back home to You. Thank You for Your assurance that we are all loved, each one as if there were only one. Show us how to give You glory, Lord. Amen.

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.

In the Blink of An Eye

Most caregivers discover that’s just how quickly moods can change. In the proverbial blink of an eye, those with Alzheimer’s or other forms of dementia can go from sullen and uncooperative to relaxed and quiet. Just as quickly, conversation and smiles may become shouting and restlessness. Obviously, it’s not too challenging for caregivers to keep up with positive change. But how do we shift gears when a positive mood suddenly becomes negative?

  • Listen

After a morning of easy talk, easy smiles, easy cooperation, Mom scowls, first at me, then at the plate I’ve just set before her. I study the plate but find nothing that might have upset her.

“It’s just lunch, Mom,” I tell her.

No doubt she can’t hear my upbeat, positive voice over her own shouting. “What is that? I don’t want it. I don’t eat here.”

sun and lightning

I’ve learned to pay close attention to what Mom says when she’s angry. The angrier she is, the harder I listen.  Sometimes her words tell me nothing; often her shouting contains no words. But this time she’s hinted at three possible causes for her anger. I address them one by one.

“This is your lunch, Mom. It’s pimento cheese, one of your fav—“

 “No! No, no, no!”

“OK. If you don’t want it right now, I’ll wrap it up and put it away for later.”

No shouting this time. She lifts one bare foot and kicks my shin.

I back away. “If you don’t eat here, where would you like to eat?”

 “At home. With Mama. Take me home!”

 An impossible request. Now what?

  •  Stay calm. And try to take your feelings out of the situation.

I take the plate away, sit with her at the table, and do my best to wipe my face clean of emotion. If I’m sympathetic, she often gets the wrong message. In this case, she might read my attempt to comfort her as “OK, I’ll take you home now.” But if I look stern or tell her what to do, her anger escalates. So I try to erase all emotion from my voice, too. “I know you want to go home, Mom, and we will. Soon. But right now we have work to do here.”

More shouting. “No, no, no, no!”

  • Try distraction.

I point out the window. “Look Mom! It’s that squirrel you saw yesterday! I hope he doesn’t go to the garden and eat another tomato off the vine.”

Without even turning her head, she says, “Take me home now.”

I try other distractions: folding pillowcases, taking a walk, a cup of tea. Each activity is met with a loud “No!”

  • If the situation allows it, wait until the storm passes.

So we sit. Or sometimes we walk; if Mom gets out of her chair, I follow her. This always makes her even more furious, but safety requires it. Eventually the shouting appears to be too much of an effort for her. She sits without a word. Is she ok now? Sometimes, but usually she’s still angry, glaring at me. Trying to keep my face neutral, I watch her and say nothing. I’ve found Mom can get angry in an instant, or sad in an instant, but happy takes longer.  I’ll have to be patient. Wait for her to give me the next cue. It could take 5 minutes or it might take an hour or more. But if I watch and listen, I’ll catch her cue.

rainbow

This time it’s hunger. Mom glances toward the kitchen a couple of times, so I get up, retrieve her sandwich, and set it in front of her again. I smile, but don’t say anything. The quiet calms her, I think, and her brain can rest instead of trying to make sense of what I say. If she wants the sandwich, she’ll eat it. If not, she’ll leave it alone or push it away.

In this instance, I wasn’t able to give Mom what she wanted. All I could do was stay close by and let her anger play itself out in a safe place. I had listened; because her request was impossible to grant, I tried to distract her with other activities; but at the end, I could only wait with her.

  • Sometimes you can’t wait for the mood to pass.

As difficult as it is when we can’t do what our loved ones want, it’s far more difficult when the option to wait is also taken away. For example, when Mom stops in the middle of the street, saying she’s tired, she wants to sit down right here, I don’t have the option of waiting until she decides to take another three or four steps to the curb. I must get her moving right away, and that means I have to take physical control. Keeping up a steady stream of calm conversation about anything at all, I stand with my shoulder behind her shoulder blade, put one arm around her waist, and hold her elbow with my other hand. I’m bigger than she is, so when I start walking, slowly, my body pushes her’s along. The element of surprise is also in my favor.

Of course we would never knowingly ask our loved ones to do something they’re too weak to do, but if we’re in a spot where they could be injured and they suddenly decide not to cooperate any more, we must have a plan to get them to safety, whether they help us do so or not.

It’s another sad truth caregivers must accept: we can’t keep those we’re caring for from experiencing feelings of anger, fear, sadness, suspicion. But having accepted that, we must also understand that there are ways to help them deal with those feelings. Focusing on what we can do keeps our own feelings more positive, our minds more creative, and our spirits attuned to gratitude instead of dread and fear.

Even to your old age and gray hairs I am He, I am He who will sustain you. I have made you and I will carry you; I will sustain you and I will rescue you (Isaiah 46:4 NIV).

Give us patience and strength, Father, as we care for our loved ones. We watch with faith and hope as You fulfill Your promise to carry and sustain them. Please give us wisdom as we work with You to rescue them from the pain of dementia.

How to Handle Sadness

Sadness stalks caregivers. It’s brazen, approaching us with no regard for where we are or what we’re doing.

Early on, the disease that has attacked our loved ones plants a dull ache in our hearts. Without warning, the ache can become a sharp pain, sharp enough to overwhelm us. A caregiver overwhelmed by sorrow cannot give care. So we must arm ourselves in advance with healthy ways of handling sadness.

First, a few things to avoid.

snowy trees

  • Don’t deny your sorrow, to yourself or anyone else.

If you try to pretend you’re not feeling pain when you are, at some point your mind and body will rebel. Using the tools they have, they will insist you acknowledge your feelings, first to yourself and also, at least to some degree, to those who know and love you. Their tools are formidable: insomnia, lack of appetite, depressed mood, and inability to concentrate are a few.

  • At the same time, don’t go looking for sorrow.

Chronicling the progression of the disease is a good practice, but it tempts us to watch only for the negatives. In addition to noting new incapacities, keep track of your loved one’s capabilities. Look—actively, intentionally—for things to be thankful for.

  • Don’t feel guilty because you’re not sad.

Maybe you think you should be sad when you take a break from caregiving, but you’re not. Maybe you think you should feel sad when your loved one must be moved to a care facility, but you don’t. The truth is, we don’t order up our feelings. They’re delivered to us at wildly random times in plain unmarked packages. There are no rules to govern them. The only thing we can control is our response to them. Responding to lack of sorrow by trying to manufacture guilt doesn’t make sense.

  • Don’t project your feelings on your loved one.

This is something I used to do with my mom. An example: I’d be brushing Mom’s hair in front of the bathroom mirror, remembering how her hair used to hang in long waves, shining clean, around her face. Seeing it as it was in the mirror—short, straight, dirty—led me to mourn the stylish woman she used to be. And because she could see everything I saw, I decided she must be sad, too, at growing old, with her hair and clothes so different from the past. So I’d start comforting her—both of us, really. The results became predictable: either she heard the emotion in my voice and became sad along with me, or she’d hear and not understand, which made her angry. Obviously, neither was good. I urge you to assume nothing with regard to the one you care for; instead, take your cues from them.

 

So what are the actions we can take to handle the sorrow of Alzheimer’s in a healthy way?

  • cardinal in treeTalk about your feelings with someone you trust.

Maybe this will be a good friend, or your spouse or pastor. Another excellent place to share feelings is at an Alzheimer’s support group meeting. The simple act of honest sharing with someone who cares about us, with people who have experienced what we’re going through, somehow brings relief. Once we shine the light on the truth, we no longer have to hide from it, or bear it on our own. In addition, the person we talk to can probably see the situation more objectively, and may be able to make helpful suggestions. Options—they’re always out there, just hard, at times, to see.

  • Allow yourself to be comforted.

This goes along with “Don’t deny the sadness.” Allowing others to comfort us emotionally and even assist with the tasks of caregiving means setting aside our ego. We must be able to say, “This is difficult. I need help.” Asking for help makes us stronger, not weaker; more effective, not less.

  • Journal about your sorrow.

Putting our feelings into words on paper can bring us much the same kind of relief as talking to a friend. While the paper doesn’t respond to us with words of understanding and care, the act of simply writing whatever comes to mind, knowing we are the only ones who will read it, frees us to be absolutely honest. Journaling can reveal and help us to understand thoughts and emotions and ideas we didn’t know we had.

  • Replace sad thoughts with happier truths.

Simply telling ourselves not to dwell on sad events and feelings doesn’t work. In fact, just pushing thoughts away can make it even harder to get rid of them. The better practice is to capture negative thoughts, send them away, but fill the hole they leave with another thought, one that is both positive and true. For example, instead of dwelling on “Dad didn’t recognize me yesterday,” concentrate on “Dad still trusts me to help him.” Replace “Mom hardly talks anymore” with “Mom likes it when I tell her the old family stories.” And don’t have the positive statements only as replacements; remind yourself of them often. “Chocolate ice cream is still Dad’s favorite.” “Sometimes Mom smiles when I sing.” “Dad still enjoys big hugs.” The more we speak the positive truth, the more we—and our loved ones—benefit.

  • And, of course, we can pray about our sadness.

The Lord doesn’t promise to take away pain in our earthly life, but He says He’ll never abandon us to it. He sends His comfort through our friends and family, in nature and music and beauty of all kinds, in ways we can feel with our senses and in secret ways only He and we know.

We caregivers can’t escape sadness. Watching a loved one, in spite of all our best effort, lose more and more of life can seem unbearably sad. But we are called to care. And so we’re enabled to bear the pain—not walk through it as if it weren’t there, but bear it, carry it with us as we help our loved ones on their way to an eternity free of all pain and sorrow. Their future makes our burden lighter.

“Surely He took up our infirmities and carried our sorrows….and by His wounds we are healed” (Isaiah 53:4,5 NIV).

Lord Jesus, as we see the suffering of our loved ones, You alone know the heaviness of our hearts. Comfort us, please, with Your love and care, so that we may be comfort for others.

Are We There Yet ?

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

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

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

lonely road

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

I think Mom wanted a feeling, not a place.

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

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

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

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

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

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

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

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

flock-birds-all going home

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

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

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

The Power of Need

As much as we love them, we still get tired.

As much patience as we show them, we still get frustrated.

As many times as we come back to the caregiving task, and come back and come back and come back, we still wish it were easier. More pleasant. Or over.

But the task goes on and here we are.

Why?

For the same reason we showed up that very first day: need. When we look at our loved ones, the need we see in them has the power to pick us up and keep us going. It makes us dig deep for more patience. And it draws us back to the caring, day after day.

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Need. In my parents’ home, I could see it, yes, but I could also feel it, like an atmosphere that weighted the air.

I left the early morning scent of grass and pansies behind as I stepped over the threshold.

“’Mornin’, Katrinka!” Dad bellowed from the kitchen.

I smiled as I always did when Dad called me by the name that only he used. But my radar had already detected a something’s-not-right signal in his voice. Couldn’t be Mom; she sat at the table, tea in front of her, a little orange juice left in her glass, and toast spread with her favorite plum jelly cut into bite-size pieces on her yellow breakfast plate. Charley-Dog sat at her feet, waiting for the treats that were sure to drop down to him. Everything in order—but not right.

“How are you this morning, Mama?” I asked as I made my own tea in the kitchen.

No answer.

I sat at the table and tried again. “You doing ok, Mama?”

She shifted in her chair, smiled, and tapped one index finger against her cheek.

Dad sat down hard and gave a loud sigh, like steam escaping from a pressure cooker. “See that?” he said, nodding toward Mom. “That’s all she’s done all morning. Drank her juice ok, but took one bite of her toast, spit it out, and won’t eat another thing.”

When I looked back to her, Mom’s lips were still smiling. But the rest of her face frowned.

“What is it?” I stood over her and studied her cheek. When I touched it she backed away. “Does something hurt, Mama?”

Again, the tapping. Again, Dad’s sigh, to which he added harsh words: “Marie, tell us what you want to say.” Then, to me, “I looked in her mouth. Can’t see a single thing wrong.” And back to Mom, softer this time, “Marie, eat some of your toast. You’ll feel better.”

Surprisingly, Mom complied. She picked up a little square, one with a big glob of jelly on it, and put it into her mouth. As soon as she closed her jaws, they snapped open again. She worked her lips and tongue until the toast fell out.

“Daddy, it has to be her teeth,” I said. “Or something with her jaws.”

“I thought so too. But I checked and her teeth look fine. Her jaws? How could she hurt her jaws?”

By now Dad’s voice was so loud, it had blown the smile from Mom’s face.  She half stood, sat again, shuffled her bare feet on the floor beneath her chair. While she shuffled, I gently touched her jaws. “Will you open your mouth for me, Mama?” She lifted her head, but kept her mouth closed. “It’s ok,” I said. “I won’t touch anything; I just want to look.”

In this blog, we’ve talked about the drastic decline in Mom’s personal hygiene. Barely often enough, I managed to get her into the bath tub. Far less often, I sneaked in a shampoo. But her dentures? I hadn’t ventured there. Getting them out, cleaning them, and getting them back in? The right way? No. I had drawn the line at teeth. A perforated line, maybe, but broad and bold. Dad used to run a toothbrush around in Mom’s mouth occasionally, but she hadn’t allowed that in a long time. Years. So I really wasn’t anxious to examine Mom’s mouth and teeth.

But, need. This room—Mom with no breakfast and that tapping finger, Dad with the anger he always wore when he was worried about her—this room was full of it. Scooting through a gap in the line I’d drawn, need demanded I help.

When Mom opened her mouth, I saw the problem immediately: a line of teeth pointed down into her bottom gums. The dentures on top were fine, but the bottom ones were upside down. Teeth-side down. So when Mom tried to chew, the top teeth pressed the bottom teeth into her guns.

“It’s easier to get forgiveness than permission.” In the course of our caregiving days, Dad and I had come to believe in that principle. Heartily. So despite my promise to “just look,” I reached into Mom’s mouth and grabbed the bottom teeth. Immediately, her torso drooped, in relief, I’m sure. Mine stiffened as I realized what I held in my hand. Without looking too hard or thinking too long, I turned the dentures over and dropped them, right side up, back into Mom’s mouth.

This time her smile covered every feature of her face. Dad sputtered his relief, though he simply couldn’t understand how in the world Mom had managed to engineer a way to bite herself. “Oh, I know she didn’t mean to do it,” he said as I washed my hands. “But she did it! No wonder she couldn’t eat!”

A still greater wonder to him was the fact that he had looked in her mouth but hadn’t seen anything wrong. I waited till later in the afternoon to tell him that, in a case like this, he must call me to check things out. His macular degeneration made us unable to trust anything he saw, or didn’t see.

Once the problem was solved, we had a good laugh about it. Mom ate all her toast and wanted more, so Dad made more and we all had some.

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Need. It’s always there for caregivers. It’s the enemy we fight and the reason we keep returning to the battlefield.

And there is another, more personal way need can help caregiversSurely we have needs of our own. We crave rest to battle exhaustion. Relaxation to replace stress. Certainty in the face of confusion. Hope to overcome despair.

How do our own needs serve us? They remind us to look up. They turn us to the Lord, the one Source of all power and strength and courage and mercy. Our needs teach us to ask for what we need, and to be grateful for what we receive.

Then your light will break forth like the dawn, and your healing will quickly appear; then your righteousness will go before you, and the glory of the Lord will be your rear guard. Then you will call, and the Lord will answer; you will cry for help, and he will say: Here am I (Isaiah 58:8-9 NIV).

Lord, remind us to look to You every day and night. You alone can give us the strength, wisdom, and perseverance to meet the needs of our loved ones. You alone can comfort, strengthen, and encourage us. You are All in all. We praise You. We thank You.

Be Prepared

The death we experienced in our family a few months ago began as an emergency. The ensuing tragedy stopped me cold. I’m on my way back now from that black pit, but getting past the shock and learning to accept the pain has taken time. And lots of work. Thank you for your prayers for our family.

Emergencies are pretty much a fact of life. They will come. Some will be big; some, small. All will be unexpected and all will require immediate action that takes us away from our everyday tasks.

Now I find myself wondering: If this tragedy had struck while I was taking care of Mom, how would I have handled it? Alzheimer’s doesn’t give anyone a break, even for emergencies. Caregivers can’t demand that life stop to let them grieve or be ill or even go to the dentist. There’s no time-out while we buy groceries or get a flat tire fixed.

What are caregivers to do?

The answer: we must take care of ourselves. And I don’t mean be careful not to get sick and be sure to keep good tires on the car. I mean, in two words, be prepared.

We’ve talked before in this blog about the wisdom of bringing in help to assist at-home caregivers. We’ve emphasized that caregivers need breaks. We’ve noted that a loved one with Alzheimer’s will often be more cooperative with a stranger than with someone more familiar. We’ve made a point for safety—professionals have expertise and experience that make certain caregiving tasks, bathing for example, easier and safer. Any one of those reasons may justify bringing in a helper, professional or not.

But a still more compelling argument can be made for having backup: Emergencies will arise. Not if, but when they do, they can’t be ignored. Caregivers get ill; their cars break down; other family or friends suddenly need their support. Maybe there’s a funeral they must attend, a time of grieving they cannot avoid.

During a particularly difficult time in my mother’s illness, I faced the kind of emergency I had feared but not prepared for. Dad was struck with a life-threatening heart ailment. Obviously, I couldn’t be with him at the hospital and at home with Mom at the same time. By the skin of my teeth, I was able to get someone to stay with Mom during the day. At her bedtime, I left the hospital to be at home with her until morning.  In spite of my lack of planning, we managed. But the time would have been easier for Mom if she were already accustomed to staying with someone else. And Dad and I could have avoided the additional stress of worrying about her.

“We’ll have no outside help.” Dad voiced that order many times in my early caregiving days. I should never have agreed to it. As the months passed and I saw the folly of his words, I should have challenged them. I should have gathered a lineup of helpers—or at least one!—who could step in if I was called away. Just the security of having people I could count on to give me and Dad a break would have made all three of us safer and healthier. But I didn’t speak up. And I regretted it.

Spelling Game says Help MeSo I urge you, if you’re an at-home caregiver, ask for what you need. Be prepared. Have someone who can take your place—when you need a break, when you need help with a particular task, or in an emergency. That’s taking care of yourself. And taking care of yourself is taking care of your loved one.

And if you know someone who is a caregiver, remember that life doesn’t stop for Alzheimer’s. Taking over care duties for a few hours is great, but if you’re not comfortable with that, rest assured there are other ways to assist. Pick up a grocery list and do the shopping now and then. If the need arises, take the caregiver’s car to be repaired or be the stand-in to meet service or delivery people.  Maybe volunteer to provide a meal occasionally.

Though we all need help sometimes, we know there are seasons and events in life when some of us need more and others have more to give. Isn’t it wonderful how that works out? Let’s get together. No matter which side of the situation we’re on, let’s be prepared.

 Day after day men came to help David, until he had a great army, like the army of God (1Chron 12:22   NIV).

Father, make us both humble and bold as we care for our loved ones. Let us not be proud, thinking we can do it all alone. Neither let us be fearful or ashamed of asking for the help we need. Thank You, Lord, for your faithful guidance.

I Was Wrong.

I confess: I complained.

To my husband, my sister, and my close friends, I complained. Sometimes with loud, angry words; sometimes with quiet, hopeless words; sometimes with wordless tears. I whined about being too tired to enjoy an evening out or too sad to plant my annual vegetable garden or too stressed to relax, even when I wasn’t taking care of Mom.

The people I complained to were also the people likeliest to visit Mom and Dad—my husband, my sister, and one or two other close family members. Dad discouraged visits from almost everyone else. Actually, he pretty much told them not to come.

Dad could say “No” to company in a plethora of ways. “The house is a mess. I can’t find time to do much cleaning. We’re in and out a lot. Marie might be asleep at any hour of the day. We don’t have any kind of schedule.”  Dad stored all his reasons right on the tip of his tongue and they were, eventually, very effective.  Although early in Mom’s illness, a few neighbors and friends tried to ignore his words and visit anyway, they surely noticed, even from the sidewalk, the front windows barricaded by the blinds Dad kept closed for just that circumstance. Still, he complained, some persisted. They knocked and/or rang the doorbell, but after waiting in vain for someone to open the door, they finally gave up, stepped off the porch, and didn’t return.

Dad would have his way, no matter what.

What he called protecting his privacy became, for me, isolation. Every morning, I arrived with a heavy uncertainty of what the day would bring. And at the end of the most difficult days, I spent much of my drive home preaching to myself: “Do not carry this frustration home with you. Don’t spend your free time complaining. Mom can’t help her behavior. Dad tries his best. You at least get a break. He’s there all the time. Don’t criticize him for wanting to do this his way. And don’t complain and whine when you get home. There’s nothing anyone can do about it. Just forget about it and relax.”

My preaching seldom worked. Almost every night I filled my husband’s ears with grumbling and complaints, his mind with the difficult scenes of my day, his spirit with the weight and the cruelty of Alzheimer’s. Later, as I lay in bed, I spent sleepless hours beating myself up for dumping my pain in his lap. “Wrong! You’re so wrong to whine and complain. What good does it do you to help when you make other people miserable with your pain? You’re weak. You must be the weakest daughter in the world. The weakest wife in the world.”

I was correct in saying I was wrong. Wrong in so many ways. But not in the ways I thought.

  • I was wrong not to challenge Dad about visitors. Seeing more familiar people might have kept Mom engaged in the family—more engaged, for a longer time.
  • I was wrong to think that because Dad was there with Mom all the time, he knew better than I what would work and what wouldn’t, what would help and what wouldn’t. The uninterrupted stress and anxiety he dealt with clouded his vision and interfered with his judgment.
  • I was correct that Mom couldn’t control her behavior, but I sometimes forgot the truth we had observed in so many circumstances: Dad and I could influence her reactions. We might have learned that Mom enjoyed visitors, even if Dad didn’t.
  • I was wrong to believe that talking to other people about the caregiving problems we faced was a bad idea. Talking to others was a good thing, if I did so believing that something good could come of it. People able to look at situations and behaviors more objectively than I could make fresh suggestions. Thank goodness, I learned that truth early enough to benefit from it.
  • I was wrong to think that talking about my pain was weak. Again, if I could share my frustration, anger, hurt, and sadness with someone who knew me well—if I could do that in the belief that something positive could come from it—then sharing was a good thing. A very good thing. There’s something about talking, just talking, about a problem that gives us relief. I can’t explain it, but I know from experience it’s blessedly true.
  • I was wrong to think I was the weakest daughter, the weakest wife. Good heavens and thank goodness, there’s no scale to measure such things. I was just feeling sorry for myself. I was saying “I must be the weakest, because no one else has to deal with what I have to deal with.” And of course that was wrong, too. There’s no scale by which we can compare our pain with someone else’s. What we can do is look at our own situation and choose: Will I continue to fight this battle or not? We all choose; we just decide.
  • Finally, I was wrong to call myself weak. Alone, I was weak, but I was never alone. God, almighty Creator of the universe, was with me every second. He strengthened my spirit, and He sent me people with knowledge, experience, listening ears, and kind hearts to fight at my side.  Some of those people were friends and relatives. Some were medical professionals. Many were fellow caregivers I met and talked to in Alzheimer’s support groups. And many were people I didn’t even know who prayed–and still pray–every day for caregivers. Like the presence of the Lord, those people were with me; they kept me from the weakness of feeling alone.

I pray you remember:

  • Trust yourself.
  • You have options.
  • You can choose. You can decide.
  • Share your feelings. Share your experiences. You may keep someone else from feeling alone.

But [the Lord] said to me, “My grace is sufficient for you, for my power is made perfect in weakness.” Therefore I will boast all the more gladly about my weaknesses, so that Christ’s power may rest on me. That is why, for Christ’s sake, I delight in weaknesses, in insults, in hardships, in persecutions, in difficulties. For when I am weak, then I am strong  (1 Corinthians 12:9-11  NIV).

Yes, Lord, I believe that Your power is sufficient for me. I am comforted by the vision of You standing beside, fighting for me, for my loved one. Thank You for reminding me: I am never alone.