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.

Are We There Yet ?

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

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

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

lonely road

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

I think Mom wanted a feeling, not a place.

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

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

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

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

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

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

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

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

flock-birds-all going home

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

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

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

Time — You Have to Take It!

If you’re an Alzheimer’s caregiver, you know that even well-established routines eventually go by the wayside. And we have to let them go. Fighting to make our loved ones comply with a schedule they no longer remember or understand is upsetting to everyone involved, and usually futile.

So how do we help those we care for meet the necessities of life? We develop a different mindset: a watch-for-the-opportunity mindset and a seize-the-opportunity approach to caregiving. Eating, drinking, bathing, dressing, even visits to the bathroom—we‘ll find we have a sort of radar that tells us, “Now’s the time. Go for it!”

I like schedules. I get that from my mother. In our house, there was a set time to go to bed and a time to wake up. A time to get dressed and a time to leave for school. A time to come home and a time to do homework. A time to eat and a time to refrain from eating. There was no time for snacking, sleeping late on weekends, watching “silly” shows on television, or talking on the phone. On Wednesdays, you changed the sheets on your bed. Groceries were purchased on Fridays. Though you took a bath every day, or rather, every night, just before you brushed your teeth and went to bed, you washed your hair only once a week, on Saturday afternoons.

No wonder I like routines. My time was meted out to me so carefully, without a schedule I wouldn’t have known how to spend it.

all timesBut caregiving changed my perception of time.

While those in the early stages of Alzheimer’s often respond well to a predictable schedule, Mom didn’t. The disease quickly erased all her lists and plans. It took away her expectations and left her with confusion about what was going on and fear of what might happen next.

I could have insisted we adhere to our agenda and occasionally she might cooperate. But, for example, if she refused to eat at breakfast time, should I deny her food until lunch? That might have satisfied my desire for order and routine, but it would not have met her needs. So I stopped insisting and improvised instead. Dad and I ate in front of Mom in hopes it would make her hungry. I offered—and by offered I mean prepared and placed in front of her—non-traditional breakfast items, like a meatloaf sandwich or mashed potatoes and gravy. If she still refused to eat, I put the food away and waited for the next promising opportunity.

That’s the key: be ready for the next opportunity. When it comes, don’t demand. Offer.

timeExperience taught me there would be another chance to get Mom to cooperate. Most days, her moods were as changeable as Texas weather: it might be cold and dreary in the morning, warm and sunny a couple of hours into the day, and cloudy and cool at bedtime. So I waited for a change of mood. How did I know, for example, she might consent to eat? I watched for her to be restless. When she began looking around as though searching for something, I offered food. Maybe she’d eat “breakfast” just before noon, and “lunch” just after. But all that mattered is that she ate and felt well. It made no serious difference whether she took a bath twice a month or once in two months; as long as she was clean enough to be healthy and comfortable, we were fine.

In general, the time to wake up was when Mom woke. The time to dress was when she would allow herself to be dressed. The time to eat was when she was hungry, or when she saw some delectable dish—potato chips or ice cream or tomatoes—she wanted.

I recommend that, when watching the clock doesn’t work, watch the cues you receive from your loved one instead. You may find you have to make your offers many times, but eventually you—and your loved one—will succeed.

One more point, as important as any in this blog: be sure to take your time. When you have a break in caregiving, don’t spend the free time cleaning or catching up on work. Instead, do something you enjoy—read or listen to music or talk on the phone with a friend. Even better, have a friend or volunteer come spend a morning or afternoon with your loved one so you’re completely free to follow your own pursuits. Even a break of an hour or so will allow you to get outside, take a walk, breathe more freely.  Scheduled or unscheduled, free time is tonic for caregivers. Claim as much of it as you can.

Let the notion of time change as it must. If you work with it, not against it, you will free yourself and the one you care for from its demands and, instead, indulge its possibilities.

What time I am afraid, I will trust in thee.  In God I will praise his word, in God I have put my trust….  (Ps. 56:3  KJV).

Father, we know that all time is in Your hands. Guide us to use it for the well-being of our loved ones and to Your glory. We trust You, all the time.