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.”

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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.