Begin with Trust…in Yourself

Everyone with Alzheimer’s has it a different way. The range of symptoms is wide. Not everyone develops all of them. And there’s no timetable for how fast or slowly the disease develops.

In addition, there’s no way to predict at what point the disease will reveal itself to outsiders. Depending on how much time we spend with them, how open they are about their daily activities, and whether they or a spouse or friends try to hide the symptoms, we may discover in the beginning stages of Alzheimer’s that our loved ones need care, or we may not find out until far enough along that we wonder why we didn’t notice sooner.

Given all the variables, how do we begin? Where do we start?

I discovered Mom had Alzheimer’s on a car trip I made with her and my father. Dad had been hiding her symptoms for a long time, but as we were together 24 hours a day, I witnessed the issues firsthand. Mom was absolutely incapable of deciding what to wear.  Ordering from a restaurant menu made her so nervous, she wouldn’t eat. She had major problems with incontinence. Some things I tried to pass off as the eccentricities of getting older. But when Dad and I told her she couldn’t go out for a walk alone–and barefoot–the severity of the symptoms couldn’t be ignored any longer. Mom screamed and kicked and hit us. It took both of us to get her to a sofa where she thrashed and fumed until exhaustion overtook her and she fell asleep.

Mom was still at the point where she had good days and bad days. The next day of our trip was miraculously good. Still, the introduction had been made. I looked Alzheimer’s straight in the eye—and panicked.

At home, as I talked to my husband about the shocking events, he said, “You’re talking like this is a crisis.”

I’m sure I shrieked my reply. “Of course I am! If this isn’t a crisis, what is?” A few minutes passed before I could take in his words. When I did, I realized he was right.

panic-or-calm-signpostWhat he was trying to tell me is that, no matter how hard I tried,  Alzheimer’s isn’t a crisis that, even with great expense of effort, can be dealt with and resolved. Instead, Alzheimer’s is a condition of life. It affects every facet of every day, for the patient and also for those who care for him or her.  It can’t be fixed and left behind like a bad memory. It moves in to stay.

Once I had taken time to let that reality sink in, reason and common sense made the next steps easier to find. I escaped the panic and sense of helplessness I felt in those first days, and began to, as the saying goes, just do the next right thing.

Here’s what I learned:

  •  I could not possibly do everything at once.
  •  But I could see the priorities; I could tackle them first. For example: Mom often wore the same clothes day after day, but what she wore was far less important than her health. So one of my first actions was to make an appointment for a complete check-up. Mom saw the doctor in clothes that were less than fresh, but I found out it was ok. The clothes-police didn’t even give us a warning ticket.
  • I couldn’t do it all.
  • I couldn’t do it alone, and I didn’t have to. I had a Helper with me every minute. And earthly assistance was abundant if I would search it out and ask for it.

 In other words, what I learned is that I could trust myself.

headed in right direction

Did I do everything the best way? Heavens no! In particular, I never learned to insist on having help. But everything that had to be done got done. And Mom lived as fully and happily as Dad and I could help her live…which made Dad and me feel happier than I ever imagined we could back in those first desperate days.

So, wherever you are in the caregiving journey, I urge you to trust yourself. You can do this. And ask questions. Ask for help. You don’t have to do it alone. You have more resources than you can imagine. One of them is right here in this blog. I’m praying for you.

God is our refuge and strength, a very present help in trouble. Therefore we will not fear,
even though the earth be removed, and though the mountains be carried into the midst of the sea…  (Ps. 46:1-2  NKJ).

Father, we know You are always with us. Help us trust in Your guidance and love and care, for ourselves and for our loved ones.. Trusting in You takes away our fear. Thank You, Father.

Good Morning? Yes!

Morning problems, in my experience, have to do with getting started.

Clean clothes

Food and drink

Medications

Those are Mom’s immediate needs when she gets out of bed. The problems arise when she refuses clean clothes, food and drink, and/or medications. If she refuses one, she will often go on to refuse all three.

Two actions are called for on those days:

1) I have to expect that — sooner or later — Mom will cooperate; and

2) I have to step back if she refuses, wait, and try again later as if it were the first time.

Taking those actions always produces positive results for me.

And yes, both are ACTIONS.

Expecting success has to be more than a thought. It must be a conviction: Mom WILL cooperate and she will probably do it right away. That expectation leads me to act in a certain way. Caregivers soon realize that their own stress and anxiety spills over onto their loved ones, and can complicate a good situation or make a difficult one even harder to resolve. Similarly, our expectation of success translated into calm, assured words and movements can influence our loved ones in a positive way. So foreseeing a good outcome lets me be relaxed. I can smile as I take Mom’s arm and lead her to the bathroom.  If she refuses to cooperate right away, my expectation of eventual success prompts me to take additional actions: I watch for signs she’s ready for help; I stay prepared with clothes at hand, food and drink kept warm or cold, medications close by and ready. And expecting success gives me more patience, more energy to keep trying.

Backing away when Mom refuses to let me help is hard in a lot of ways. When she doesn’t want to get clean and dressed, the threat to her health from lack of hygiene is bad enough. But messes of all kinds can result from Mom not being clean. When she goes without food and drink after having nothing during the night, her physical/mental/emotional condition can decline quickly.  And the need to take medication on at least a fairly regular schedule is critically important. So backing away when Mom says “No!” is very hard to do. But what is the choice? I never use my physical strength to get Mom to do something unless she’s in immediate danger. I can clean the messes later. And if I become concerned that lack of food, drink, or medication has gone on too long, I can call the doctor for help and advice. So I back away.

And wait. But again — this is an active waiting. I watch for a change in Mom’s expression, a look in my direction, restless movement, maybe shuffling her feet. I listen for a word, a sound. Those can be signals that Mom’s “in a different place” and might feel more agreeable. The more important point is that I let some time pass, usually just a few minutes.

Then, even if I see no outward indication of any change,  I try again. Maybe I use different words. Maybe I approach the task differently. Or maybe I do things exactly the same way as last time. And maybe Mom will say yes this time, maybe not. But my actions and attitude are based on my absolute conviction that she will cooperate. Probably soon.

Finally, when I try again, I make sure to do it as though this is the first time today we’ve started this activity. I say nothing about Mom having refused earlier. I make no mention of time or being late. We’re simply doing what we do every day: getting dressed and eating and taking medications.

These actions work for me on every difficult morning. Of course they also apply to other situations at other times of day, but mornings are special, especially for caregivers. Our loved ones likely won’t remember in the afternoon or evening whether their morning went smoothly or not. But beginning the day well is a real boost for us caregivers.

Father, You have promised that when I call, You will hear and answer. I experience the truth of that promise daily.Thank You for allowing me to trust You completely.

In the morning, Lord, you hear my voice; in the morning I lay my requests before you and wait expectantly  (Psalm 5:3  NIV).

The Certainty of Uncertainty

Living with Alzheimer’s means life is unpredictable. Things that used to be second nature to your loved one—routines and schedules, even basics like getting dressed and eating meals and going to the bathroom—are forgotten. They’re lost slowly or quickly, for now and then or forever, but lost to the point that life becomes as unpredictable for you, the caregiver, as it is for your loved one.

What is certain is that we aren’t alone. So we can manage, even the unpredictable.

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When it comes to dealing with Mom, Dad and I don’t know what to expect any more. Will she wake up happy or angry? Will she be able to go to the bathroom and dress on her own or will she need help? If she needs help will she accept it or refuse it?

The answers to those questions carry special weight this morning. Mom has an appointment with the doctor today. Dad and I will get information today. We’ll find out how to help Mom today.

If she agrees to go.

I wasn’t here the day of Mom’s last appointment, but things were predictable then. It’s likely she had the appointment scheduled early so she and Dad could go to breakfast afterwards. Of course Mom would have bathed, probably the night before. She probably went through the normal exam sequence without complaint, allowing the nurse to get her blood pressure, temperature, pulse, and weight. I can imagine her sitting calmly while the doctor listened to her chest and told her, as he surely did every visit, to stop smoking. I can picture him asking about her medications for cholesterol and high blood pressure—they were having the desired results, but were they causing her any difficulty? “No, no,” she probably said. “They’re fine.” Some smiling and shaking hands would have ended the visit, and Mom and Dad would have stopped by the desk to make another appointment for the next year.

But today isn’t a year later; it’s just over six months. Yet, so much has changed. Mom refused to bathe last night. She woke later than usual so there’s no time for a bath this morning. She comes into the kitchen wearing what she wore yesterday: black slacks, decorated with a bit of catsup from dinner, and a wrinkled red t-shirt.

“Honey, I know you don’t have time for a bath,” Dad tells her, “but at least you want to put on clean clothes, right?”

Mom’s face darkens like a cloud heavy with rain. “No, I want to wear these clothes.” She walks to her chair at the table and sits. “That’s why I put them on.”

I stifle Dad’s complaint with a don’t-make-waves look and a tap to the face of my watch.

But we’re already tossed by rough water. I give Mom her hair brush; she drops it on the floor. I fetch her tennis shoes from the bedroom, but no, she wants the green ones. I ask if she’s hungry and get no response at all.

Since she’s making no move to put on the shoes, I bend down to do it for her. “Well, I am!” I say. “I’m hungrier than a dog that hasn’t eaten in a thousand years.” The expression is one my sister and I made up back when we were growing up in this house. It earns me a smile from Mom. I feel like a first-grader with a gold star on my homework.

Mom’s still smiling as we drive to the doctor’s office. Dad is silent, his knuckles white against the steering wheel. Me? I’m praying. Surely the doctor will see how drastically Mom has changed in six months.

He must see, Lord. Please help him see. Help him help us.

In these days when nothing is predictable, thank You, Father, for the certainty of Your care. I know we can rely on You to guide us through the present darkness. You can move reluctant feet toward healing. You can draw sad hearts to hope. You can bring new smiles to faces made hard by confusion and fear. Thank You, Lord, for loving us forward.

 “I wait for the Lord, my soul waits, and in his word I put my hope. My soul waits for the Lord….for with the Lord is unfailing love.”   (Ps. 130:5-6, 7)