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 — Hygiene, Incontinence

Keeping a loved one clean and comfortable is one of the hardest but most important tasks an Alzheimer’s caregiver performs. The disease not only takes from our loved ones the ability to control bodily functions, but also renders them incapable of bathing, brushing their teeth, even washing their hands.

one lilyHYGIENE

With the decline of mental and physical capabilities, just getting dressed and undressed comes to be a challenge. The movements which for most of us are instinctive—not just buttoning and zipping, but moving an arm in the proper direction to get it out of a sleeve or lifting a leg to put on underwear, slacks, socks, shoes—those movements become a greater and greater ordeal for the Alzheimer’s patient, both physically and mentally. Taking a bath or shower adds the necessity of getting wet, and being surrounded by the plethora of  items needed for washing—soap, shampoo, washcloth, bath chair, towel, brush, toothbrush, toothpaste. It’s easy to see how the ones we care for can be overwhelmed and resist all forms of hygiene.

To reduce their fear and help them cooperate with hygiene tasks, we can rely on some of the same tools that help us with mood swings and hostility. We can agree instead of argue, keep talking, and use distractions.

Agree
It cannot be said too often: arguing with an Alzheimer’s patient is not good. It almost never helps the situation, and often makes things even more difficult. So if a loved one complains about changing clothes or washing hands or some other aspect of hygiene, we do well to agree. “Yes, Mom. It’s a hassle. It will take a few minutes. We have to move around a little.” Once we’ve listened to and acknowledged their feelings, we can just keep talking, hoping our own words will make tasks easier.

Talk
Now we can speak about whatever we want. Teamwork, for example. We’ll be doing this task together. We’ll be a team. And together we can be very fast. We keep up the chatter, on any subject at all, as we move to the bathroom. All our attention—words and looks and even touch—should be focused on the one we’re caring for. Our non-stop talk can continue as we wash hands, change clothes, whatever. Even if our loved ones don’t understand the words or the subject, if they are listening to us, the urge to resist may be diminished.

yellow lilies

Use Distractions
The idea is to use a distraction that appears completely unrelated to the task at hand. For example, if Mom didn’t want to get up and wash her hands, I’d wait a few minutes and then bring a pail of water to the table and set it down in front of her. What was this? This was never here before! I’d leave the water there while I went after soap and a towel, which I carried to the table like a surprise behind my back and set down on a chair behind me. What did she put down? What’s happening? I’d put my hands in the water, then hers, as if it was just what we’d planned. By this time, Mom was either sufficiently confused or sufficiently delighted to let me to wash and dry her hands. Another example: If she needed a bath, I’d walk with her down the hall, carrying a plastic cup of lemonade. Once we turned into the bathroom, I’d ask Mom to hold the cup while I took off her clothes, then I’d take it back and set it on the counter. When she was sitting safely on the bath chair, I’d start bathing her, telling her we had to do this quickly so she could get her lemonade.

Please note: Bathing an adult is not easy. If you consider getting professional help, even on a very limited basis, bathing, or hygiene in general, is the first need I would address. In some cases, an aide is accepted more easily than a family member. Mom and I didn’t have issues of shyness; she didn’t mind me seeing her undressed. But by far the greater issue is safety. Helping Mom move around and keeping her stable when she was wet required strength and expertise. A professional caretaker would have made bath time much safer for Mom and easier for both of us.

orange liliesINCONTINENCE

Incontinence is a particularly difficult aspect of Alzheimer’s. Let’s be honest: Changing an infant’s diaper is much easier than changing an adult’s wet or soiled underwear. But many products originally designed to be used with infants are now available to make things easier for adult caregivers.

Disposable Underwear
These products are miracles in themselves. They are super-absorbent, and made in varieties that open on the sides (easier for bedridden patients), or pull up and down, or both. Not having worn them, I can’t vouch for the comfort, but Mom never complained about them. Believe me, that says a lot. What Mom did complain about was our making her wear them in the first place. Though she insisted she didn’t need them, strong evidence indicated otherwise. Only after we removed all her regular underwear and put disposables in their place did she agree to wear them.

Wipes
Wipes designed for adult use are larger than baby wipes, and stronger. They make cleanups much easier for caregivers and are convenient to carry when you’re going out. When neither talking nor distractions could coax Mom into the bathroom, she sometimes sat in wet or soiled underwear for hours. When she finally allowed me to tend to it, I cleaned everything as best I could without getting her into a tub or shower. Wipes were a tremendous help. I did what was possible and, by the daily miracles that always saved us, it was enough.

Waterproof Pads
Dad and I were fortunate in that Mom usually slept soundly all night. But as absorbent as disposable underwear are, they were often no match for eight or ten hours of sound sleep. We used disposable waterproof pads on top of the sheet to eliminate the need to wash bedclothes every day. The pads come in at least two sizes and can also be used to protect car seats and furniture. In addition, we used washable waterproof mattress pads. They go under the bed sheet and cover the entire mattress.

 

Once again, we must remind ourselves that we don’t have to handle everything ourselves. If the time comes when, in spite of our best efforts, lack of hygiene causes or threatens to cause health problems for those we care for, the time has come when outside help is not just advisable, but necessary.

lilies of the fieldAs we face the particularly difficult tasks associated with hygiene, it really will help if we can act out of love in addition to simple necessity. Working in that attitude, we elevate the task and we honor our loved ones. And the miracle is that in the midst of our work, our love grows.

Consider the lilies of the field, how they grow: they neither toil nor spin; and yet I say to you that even Solomon in all his glory was not arrayed like one of these.

(Matthew 6: 28-29 NKJV)

Father, we ask for patience, that both our actions and the thoughts of our heart may be pleasing to You. We ask for humility, that we may serve as You served. We ask for love, that we may honor You and our loved ones with our service.

 

The Hardest Things — Anxiety

The unknown is frightening. To all of us.
Just imagine how much of what is known becomes unknown for someone with Alzheimer’s.
And as caregivers, we have already seen how much of Alzheimer’s is unknown to us.
So there’s plenty of anxiety to go around. And seeing it, either in these words or in person, can be disheartening.

unknown

But we don’t have to surrender to it. Weapons are available to fight anxiety.

In the early stages of Alzheimer’s, symptoms come and go. One day Mom knows exactly where her sweater is: where it always is when she’s not wearing it, lying across the back of the living room couch. A couple of days later, she looks for it “everywhere,” not even seeming to recognize it when she sees it on the couch. The next day, she’s able to grab it as we go out the door to breakfast. Mom doesn’t say anything to me or Dad about the confusion, but she’s tense now. Every day.

Later, when the symptoms are more serious and almost constant, Mom is upset about many more things. Anything she sees or hears may become cause for worry. A news story about a bank being robbed: “Is our money in the bank? I want to see it. Did someone get it?” Hail on the roof during a storm: “What is that? Who’s beating on our house? Someone’s trying to break in!” If she can’t find her sweater, she is certain someone has stolen it, telling us to call the police, louder and louder, until I put the sweater in her hands.

Still later, she understands much less of what she sees and hears. She doesn’t talk much anymore. But she still gets anxious occasionally. I can see it in her eyes, the expression on her face, the shuffling of her feet. I try to determine what’s bothering her: Is she hungry? Thirsty? Does she hurt somewhere? Too hot? Too cool? What does she need? Sometimes, with miraculous assistance from the Almighty, I’m able to find something, a change of some kind, that makes her face relax. Sometimes I can even see the tiniest of smiles, not on her lips, but in her eyes.

As for me and Dad, in the early stages, we’re continually trying to stay one step ahead of the symptoms. Continually surprised by new ones. Questioning whether this or that odd behavior really happened yesterday, because Mom’s totally normal today. We know something’s wrong, but we don’t want to upset Mom, so we pretend all is well. But the strain reveals itself in a tone of Dad’s voice, or a puzzled look on my face. As hard as we try to protect Mom from our anxiety, we’re not always successful.

Later, we are worn by the constancy of the symptoms. Mom gets upset so often, we’re on guard all the time. But even when she herself is relatively calm, Dad is exasperated by her repeated questions, her reluctance to eat, her lack of exercise. I’m worried about Mom’s incontinence, conscious of her dirty hands and hair, concerned about her hygiene in general.

As Alzheimer’s steals more and more of Mom’s awareness, Dad and I are more determined to keep her comfortable and well. And less able to do so. The difficulty in determining her needs causes us both anxiety and pain. Again we see evidence for our belief that Alzheimer’s is harder on patients in its early stages, but gets easier for them as they lose awareness of their situation. For caregivers, Alzheimer’s doesn’t ever get easier to bear.

Maybe you’re wondering about the statement we made in the beginning of this post:
We don’t have to surrender to anxiety. Weapons are available to fight it.
It’s true. Please keep reading.

known landscapeIn presenting ways to handle the anxiety and stress Alzheimer’s brings, we’re going to change the order of the presentation: we’ll address helps for caregiver stress first, before we look to helping our loved ones.

There’s a reason for that:

The caregiver is the most important and effective weapon against the anxiety of the one cared for. Helping the caregiver is absolutely essential to helping the person with Alzheimer’s.

The most effective way to deal with the stress of caring for someone with Alzheimer’s is talking. Talk to a spouse, a friend, someone you trust. Talk to someone in a support group who’s been in your shoes. Talk to a pastor or counselor. Just talk. Speaking about what you’re going through doesn’t change what you’re going through, but it can change your attitude and approach to caregiving. You have someone to share the experience with you. Even sharing only in words relieves the feelings of isolation and loneliness a caregiver may feel. You may find that friends, a counselor, a support group member may have suggestions you haven’t investigated yet. And just speaking your concerns, frustrations, and pain to a sympathetic listener somehow makes the burden seem lighter.

The next most effective weapon against caregiver stress is help. Bring someone in to stay with your loved one and give yourself a break. Bring someone in to help with bathing or cooking or housework and enjoy the support and the company they can provide. Seeing, understanding, and experiencing the truth that you do not have to do everything yourself will lighten the burden you carry, refresh your body and spirit, and make you a better helper for your loved one.

• And finally, do what is necessary to take care of your mental and emotional health, as well as your physical well-being. Caregiver stress and burn-out can cause serious and lasting medical problems. By all means, let your physician know you’re a caregiver. He/she can help you deal with the added stress on your body and mind.

What can we do when anxiety attacks the one we’re caring for?

• First, believe that you will find a solution. You will always find a way to defuse a tense moment. Reminding yourself of that truth will motivate you to keep trying, think creatively.

Listen as calmly as possible. Just let your loved one talk. Sometimes she will forget what she’s concerned about—or just get tired of talking.

Answer questions patiently. Again, creativity helps. Arguing with someone with Alzheimer’s never helps.

Use actions as well as words to show that all is well. Show your loved one a bank statement to reinforce your assurance that her money is safe. Explain what the statement shows; she may no longer understand it, but the confidence in your voice and the official-looking papers may give her a sense of security. Walk your loved one to the window so she can see the hail, or bring some inside for her to see and feel. After you find the missing item and show it to her, go to each exit door and click the locks, demonstrating that no burglars will be able to break in.
Employ distractions. Playing music or offering a snack or looking at photos or taking a drive—any distraction that doesn’t frighten your loved one may direct her eyes to something different, giving her time to forget her anxious feelings.

Try touch. Even when you cannot determine the source of your loved one’s anxiety, your touch may bring her calm or comfort or peace. Holding her hand or putting your arm around her shoulders or lying beside her in the bed may help. Perhaps rub lotion on her hands or feet. The sense of touch and the distraction of your actions may do what words and objects cannot.

Pray. Don’t wait until “nothing else works” to pray. Pray right away. Any time. Pray out loud or silently, but pray, knowing that you will receive help, and many times, you will see a miracle.

My soul finds rest in God alone…He is my fortress, I will never be shaken (Ps. 62:1 NIV).

Lord, make us aware of Your presence with us. Help us realize You are beside us, doing what we’re doing: working to help our loved ones. Sometimes, we find a way to bring relief to the ones we care for. Sometimes the only explanation for the relief that comes is Your power working for us in miraculous ways. But always, we can do nothing without You. Thank You, Lord, for being here.

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 — Withdrawal

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

withdrawal

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

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

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

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

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

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

talk directly

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

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

kitten  man with pet

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

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

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

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

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

 

 

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 — 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?far away snowfieldWhoa! 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:iglooThe 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.”

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.

Who’s Driving?

Alzheimer’s isn’t a simple here-to-there journey. Instead of a superhighway, it’s a winding road, with switchbacks and opportunities to turn here, or there, or maybe on that path up ahead.take the wheel

Whoever sits in the driver’s seat chooses the route.

When a loved one has dementia, the issue of decision-making moves front and center almost immediately. Sometimes there’s no question as to who should make the choices your loved one can no longer reason through. But in other cases, family members may have very different opinions about how to meet the challenges, large and small, associated with dementia. Those differences of opinion—between a parent and children or among siblings—can add immeasurably to the difficulties of caring for a loved one.

A spouse who isn’t able to find and consider all the options may yet insist on being the only decision-maker. Or one sibling may have to defend her role as the one best equipped to evaluate conditions and make choices for a parent, while brothers and sisters demand an equal say.

Choosing who is in the best position to make choices in caregiving matters may appear easy from the outside looking in. Surely it would be the relative or friend who has the most daily contact with the person being cared for, right? Would that it were so simple. First consider the fact that the decisions to be made are usually painful ones: Should we take away Dad’s car keys? Is Mom safe to go out into the neighborhood alone? Should someone assume control of finances, home maintenance, medications, purchases, donations, etc.,etc.,etc.? In addition, Alzheimer’s is a disease that affects a whole family. So questions of capability, trust, motivation, and judgment may erupt among family members just at the time when they most need level heads and teamwork.

In my own case, I know I shouldn’t have allowed my father to make all the decisions about Mom’s care. He was healthy, his mind was spry and rational, but he was determined that his life with Mom would not change. His choices were based on emotion, not common sense. So why didn’t I challenge him?

From childhood, Mom taught me to leave Dad alone. To avoid her wrath, I complied. To the letter. After all, Mom called all the shots in our house

Until Mom got Alzheimer’s.

I met Alzheimer’s the day Mom went berserk (I don’t know what else to call it—that’s what it looked like, sounded like, and felt like) in my son’s apartment. Her struggle with me and Dad exhausted her. She landed on the couch like a thrown log, stiff and leaning to one side, but eventually she lay down.I put a pillow under her head and said a prayer of thanksgiving when she fell asleep.

Right about then, Dad’s behavior became almost as mystifying to me as Mom’s had been. He sat in my son’s old thrift-store recliner, staring down at his hands. He turned them palm up, then palm down, then put them on his knees. He neither looked at me nor spoke.

Trained as I was to avoid upsetting Dad, I kept quiet also. No questions – Have you seen her act like that before? Does she do it often? Have you talked to a doctor about it? Not even a puzzled look. I did my best to ignore the tension in the room as completely as Dad was ignoring me.

When my son came home from work, Mom woke up, smiled at him, and called him by name. As I rejoiced that she was “back to normal,” Dad gave me a look that said, “This afternoon never happened. Don’t mention it.”

My obedience to that silent command set the stage for the rest of my caregiving days. I was never in charge. Or, more correctly, I never took charge.

Dad said he and Mom could manage fine; I didn’t disagree. Instead, I simply came to their house every day to “help.” Dad saw no need to take Mom to the doctor. When at last I convinced him, he let Mom do all the talking. Dad said nothing about her bizarre behavior; so neither did I. The many times I asked Dad to get professional help, even for just one day a week, he refused. With a trained aide, Dad would have been able to do whatever he wanted for a day. I would have had a day off. Mom would have gotten more exercise, been safer taking a bath. She would have gotten used to having someone else help her, just in case a day came when neither Dad nor I could be there. (Those days day did come.) But I didn’t insist. Not even for the sake of Mom’s well-being. I didn’t take control, even when I knew Dad was making a bad decision.

As crazy as it seems to me now, I let Dad stay in the driver’s seat while I just hung on, praying we wouldn’t crash.

driverBut you don’t have to do that. Instead of just riding along, you can drive.

The one who makes decisions regarding the care of someone with Alzheimer’s holds an awesome responsibility. The position requires not just common sense, but strength and courage. The choices are seldom easy, and they go on for the rest of your loved one’s life.

Information is a decision-maker’s best friend. Consulting your doctor, an Alzheimer’s support group, your local senior citizens center, and your local office of the Alzheimer’s Association will show you more options and help you evaluate each one. With that information, you can be more confident you’re choosing wisely for your loved one.

I instruct you in the way of wisdom and lead you along straight paths (Prov. 4:11).  (NIV)

Lord, we’re doing our best to guide our loved ones through the wilderness of Alzheimer’s. Please lead us with Your wisdom to make sound decisions. We thank you for Your tender love, Your mercy, and Your faithfulness to all Your promises.

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.