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.

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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.