How to Turn “No” to “Yes”

In my early days of caregiving, Mom’s “No!” was one of my greatest fears.  I felt powerless against it. It meant a fight. And I could not fight my mother. Sometimes, of course, what Mom was refusing to do was a task that could be put off until another day: letting me trim her nails, for example. If that was the case, I didn’t push very hard. But often, even though the task was a simple daily chore, it was important, for health or hygiene’s sake. So I had to learn to fight.

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Three ways to turn “no” into “yes”:

• Add a distraction or two.
• Don’t ask. Just do it.
• Wait and try again later, as if it’s the first time.

 

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Some days Mom could turn Alzheimer’s into a two-letter word: NO. Regardless of the issue or question at hand, her response to it was “No.” She could say it in a variety of ways:

• Sometimes she ignored me. Mom became an expert at avoiding eye-contact, simulating deafness, or speaking over me to any other face in the room—like my father’s, or Charley the poodle’s, or the weatherman’s on TV.
• Sometimes she used body-language. If I asked about putting on her shoes, for example, she’d wedge her bare feet tightly under her chair. Or if I wanted her to take her medications, she slapped her hands over her mouth.
• And sometimes she simply spoke up with a sturdy “No,” again and again if necessary, louder each time.

What to do?

• Add a distraction or two.

Distractions, of course, will vary from person to person, because each of us has different likes and dislikes. Extreme likes and dislikes make the best distractions. With Mom, I used a favorite food; or a sudden search for what-looked-like-a-flea in Charley-dog’s fur; or a new face on the evening news team. Once I discovered the value of distractions, I began to collect them in my mind like precious gems.

Example: Mom developed a dislike for taking her medications. Though they were clearly a necessity each day, I discovered the less emphasis I put on her taking them, the better. If she said no when I offered them to her, I’d wait a while, then introduce a distraction. Maybe…potato chips! A small handful of potato chips on a napkin were well-nigh irresistible, both for Mom and for Charley. As Mom munched and shared, munched and shared, I’d casually put her medications into her empty hand. As if by reflex she put them in her mouth, drank a sip of the water I offered, and went back to munching and sharing. Distractions could keep Mom from asking quite so many questions in a row. Distractions let me brush her hair. They were a God-send.

• Don’t ask; just do it.

If you know what the answer will be, why ask the question? Especially if you need a
“yes” but are certain to get a “no”?  So don’t ask. Just do it.

Example: I stopped asking Mom if she wanted to wash her hands before a meal. Though I knew washing was a necessity, especially with baths so few and far between, I knew she was sure to say no to it. So instead of trying to get her up and to the sink, I engaged in a stealth operation. Without a word about what we were about to do, I’d wet a washcloth with warm water, wring it out to semi-wet, and put soap on it. Then I’d wet a second cloth, wring it out so it wasn’t dripping, and carry both to where Mom was sitting at the table. Meanwhile I’d talk about whatever was on TV or who we might visit this weekend or where I used to buy my vacuum cleaner bags and oh my goodness why are there so many kinds they make it so confusing…. Talking nonstop, I’d rub the soapy cloth over her hands and then go over them with the damp one. Her hands were reasonably clean before she could even react. If she did get around to fussing at me, it would usually be with a demand to get that mess (i.e., the soap) off her fingers and get them dry!  I could comply with that order quickly and cheerfully.

• Wait and try again later, as if it’s the first time.

Some tasks absolutely required cooperation from Mom. Getting into a bathtub or shower, walking outside to get into a car, even putting on fresh clothes—these are things which I couldn’t do for her if she decided to put up physical resistance. So in these cases, I had to be prepared to take no for an answer. And I learned quickly that arguing made the situation worse: Alzheimer’s will not allow its victims to reason their way down from emotional crises. So I learned to try once, maybe twice, then leave the matter alone and try again later, as if it were the first time.

Example: On a day when we had a doctor’s appointment, if Mom refused to go outside to the car, I let the matter go. I let time pass and let Mom forget, if she  would, that we had ever talked about it. After an hour or so, I’d mention it again, as if it were the first time: “Let’s go see Dr. Smith, Mom, and then we’ll go out to lunch!” If I thought it would help on that particular day, I’d tell Mom we were going to lunch without mentioning we’d stop at the doctor’s office first. If she said no again, I’d wait longer. Yes, sometimes it took hours to get her to cooperate, so I learned to make appointments later in the afternoon. And if Mom agreed to leave at 11:30 am for a 2:30 pm appointment, we left then. Better to be early than not get there at all. But sometimes we didn’t get there at all. I had no option: I’d simply have to call the doctor to say Mom wouldn’t come. But I found that giving Mom time to relax and forget her earlier refusal usually worked. We didn’t miss many appointments.

A key part of this strategy is making each attempt sound like it’s the first time you’ve talked about it, because for the one you’re caring for, it may seem as if that’s exactly the case. There’s no value in saying, “Mom, I know you don’t want to do this today, but we have to go to the doctor.” Instead, I could downplay the doctor and emphasize some new distraction. Or I could simply take her arm and lead her to the car with no explanation at all.

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I had to keep Mom safe. I hoped to keep her comfortable. I wanted to make her happy. But her “no” stopped me. Using the three strategies above, I found I could help Mom cooperate on the difficult days. Using them, I wasn’t fighting my mother; I was fighting Alzheimer’s. I didn’t raise my voice; that made things worse. I didn’t get physical—unless she was putting herself in danger. I just found some good ways to get done what had to be done.

Before we close, here’s an important note.

If your loved one is causing harm to herself or someone else, you can’t depend on distraction, surprise, or delay. You MUST be prepared to intervene. Consider now whether you’re able to handle such a situation yourself. If not, be prepared to summon help: get a commitment in advance from a neighbor, relative, or friend or call 911.

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Father, You are the source of all wisdom, strength, patience, and love. We trust You to light our way as we care for our loved ones. Please answer when we call for help and remind us we are never alone.

“Are not two sparrows sold for a copper coin? And not one of them falls to the ground apart from your Father’s will. But the very hairs of your head are all numbered. Do not fear therefore; you are of more value than many sparrows.”      (Matthew 10:29-31  NKJV)

 

What If…the one you’re caring for is injured or becomes seriously ill?

The What-Ifs of Alzheimer’s, those panicky thoughts and questions that pop into your head as you go through your days as a caregiver, can steal every tool in your caregiving arsenal: your energy, your strength, your confidence, your creativity. The key to getting rid of the anxiety is to replace it with a plan. Today we consider, “What if the loved one you’re caring for suffers a major injury or becomes seriously ill?”

I confess: this is a question that didn’t keep me awake at night. Why? Mom had always been healthy. She was a physically strong and active woman until depression and Alzheimer’s began stealing her life away.*

Perhaps because the disease attacked her mind so ferociously, I tended to minimize the effects it had on Mom’s body. Alzheimer’s affected her appetite, her willingness to get exercise, her hygiene. Yes, I saw. Yes, I was concerned. But my concern translated to fixing those problems. I couldn’t fight the tangles of protein in her brain, but maybe I could entice her with healthier food options, persuade her to walk with me a bit more, even bathe with her if that would get her into the tub. I knew that, minus any other fatal disease, Alzheimer’s would inhibit her brain function to a degree that would eventually cause her death. But I didn’t consider that, in the meantime, the effects of the disease on her body could shorten her life.

Even when I arrived at my parents’ home early one morning and found Dad trying to help Mom up off the floor in their bedroom, I wasn’t overly concerned.

“Does something hurt, Mama? Where do you hurt?” I asked. I touched her knees, her hips, her ankles. “Here? Here? Here?”

She smiled. “No.” And then, “I can’t do it.”

Dad and I had grown accustomed to Mom’s occasional inability to do what we asked her to do. Sometimes she just shook her head to signal she couldn’t open her mouth—unless we offered her a potato chip. Or she couldn’t get out of her chair to go to the bathroom—“I can’t stand up”—but her legs worked just fine to make an excursion to the coffee shop.

On this day, since Mom hadn’t had anything to eat or drink since the night before, I started there. I brought a straight-backed chair into the room, helped her onto the chair and into fresh underwear and clothes, and got her some orange juice. Then she wanted to go back to bed. So we helped her lie down, grateful she was dressed and had some nourishment.

Later that evening, she was still lying down, still in the same position on the bed. We could see no injury; she said again that nothing hurt. We called the doctor, then called an ambulance. Two days later her broken left hip was replaced with a new one made of titanium. But after the surgery, every rehab session was like the first one all over again. Mom remembered nothing from one session to the next. Eventually she refused even to try. One month and one day after she broke her hip, Mom died.

In our situation, there was little we could have done to change the outcome of the injury. Because Mom couldn’t do the rehab, with or without the surgery to replace her hip she would have been bedridden. She died—with Alzheimer’s, because of Alzheimer’s—of complications from being bedridden.

Still, while we weren’t able to prevent her death, there were issues we could have tackled in advance that would have made the time after her injury easier for everyone—especially for her. The information listed below will, I hope, help you to consider in advance some critical decisions you may one day have to make in a hurry.

• Because Alzheimer’s impairs your loved one’s ability to find the correct words, determining how he feels, what symptoms he’s experiencing, can be challenging. Accurate diagnosis of any illness, and therefore treatment, becomes much more difficult.     A primary care physician who is experienced in treating people who have Alzheimer’s is a treasure.

• As Alzheimer’s takes away their good judgment, it can be harder to convince our loved ones to eat nutritious foods and get sufficient exercise. Weakness and lack of balance can cause accidents and injuries.      Getting a professional aide in to help your loved one with exercise and hygiene is a good investment in terms of health and safety. As the disease progresses, you’ll need to be more and more alert to your loved one’s safety.

• As Alzheimer’s steals the willingness—and, eventually, the ability—to cooperate, recuperation from an illness or injury is more difficult. Rehabilitation of muscles and limbs may be much harder to achieve, or even impossible.   My experience tells me that any treatment requiring repetition of movement or speech will be difficult and perhaps impossible for someone with advanced Alzheimer’s to accomplish.

• Issues such as diet, sleep patterns, and patient cooperation make even the prescribing and administration of medications for an Alzheimer’s patient more complicated. Caregivers may have difficulty achieving the proper manner and scheduling for giving medication, and possible side effects will be more difficult to monitor.     Again, having a doctor who is familiar with the impact of Alzheimer’s on a patient is an immense help to caregivers.

• A sudden illness or injury may necessitate not only hospitalization, but also moving your loved one to a professional care facility for a time. My father and I were shocked when we were told Mom would be released at noon the following day but she could not go home. She would have to be placed in a nursing facility. I had done no research on professional facilities—what was available, where she would get the best care, what we could afford, what would be closest and most convenient for us to visit, etc. We were able to gain another 24 hours before Mom was released, but the surprise and stress and rush to make arrangements that would so deeply impact both my parents’ lives took a huge toll on our whole family.     There is no substitute for doing your research into care facilities before the need is anywhere in view. You may never need to make that choice, or you may end up with weeks to decide, or you may have only hours. Having a couple of options to choose from will free you from worry in the present and panic in the future.

• The time to transition from nursing care to hospice care can arrive suddenly, with little or no warning.     While being “prepared” for that eventuality may seem impossible, knowledge of what hospice is and what it isn’t, understanding how it can benefit a patient and family, and consideration of whether the concept of hospice care fits into your family’s caregiving philosophy—those things will help you if hospice care is suggested for your loved one.

A comforting answer to “What if my loved one with Alzheimer’s experiences a serious illness or injury?”  is this: We’ve thought about that. We’ve looked at many of the issues we need to consider. We’re aware of the options available to deal with those issues. We can always ask for help. We’re never alone. In short, we know we can do this.  

Yes, you can.

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*NOTE: Depression is a subject that’s treated in various other postings on my blog. Because it is such a huge complicating factor to Alzheimer’s, I encourage you to get more information about it. I’ll discuss in greater depth my own experience with how depression teamed up with Alzheimer’s to affect my mother in a new post to appear early in 2018.

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 And the arms of his hands were made strong by the hands of the Mighty God…by the God of your father who will help you, and by the Almighty who will bless you with blessings of heaven above….   (Gen. 49:24-25    NKJV)

Father, help us do our best for those we care for. We rely on Your strength, Your wisdom, and Your love for us and for our loved ones. Knowing You are always near makes us stronger, wiser, more loving. Thank You, Father.

 

What If…?

The what-if’s of caring for a loved one with Alzheimer’s can defeat us before we even start to fight. They can be overcome—knowing the truth of that statement is the first step to victory—but defeating them requires action.

We’re all familiar with what-if’s. They pop up all the time, it seems. What if I get lost? What if I have a flat tire? What if I oversleep? What if…? What if…? What if…?

What if something bad happens?

Caring for a loved one with Alzheimer’s is difficult enough without entertaining the what-if’s. If you allow the Alzheimer’s what-if’s to get a foot in the door, they’ll suck all the air out of the room. Your caregiving creativity will faint from lack of oxygen and the confidence and determination that get you through your day will melt and run down your back like sweat.

Yes, it’s hard to escape fear. The extreme unpredictability that goes along with Alzheimer’s produces thoughts that can range from “What if Mom won’t get in the car to go to the doctor today?” to “What if I get sick? Really sick? Who’ll take care of Mom then?”

How do we turn those thoughts off? Well, we can’t just push them out of our heads. What we must do is replace them with other thoughts. In this case, we replace the negatives with positives, the doubts with certainties, the fears with strategies for action.

In short, we plan.

Plan. I know from experience that’s easy to say and hard to do. Deciding in advance what you’ll do in a particular situation is especially challenging when you’re dealing with a disease like Alzheimer’s. Symptoms vary widely. There’s no dependable time-line for progression of the disease. And each person experiences Alzheimer’s in an absolutely unique way. So where can a caregiver even begin to plan?

Actually, the starting point is simple to determine:

You start with what is. Right here, right now. Keeping your mind occupied with solving the challenges of the present can turn fearful thoughts into a feeling of accomplishment.

And don’t forget to watch for opportunities to laugh. Mom trying to chew with her dentures in upside down began as a mysterious problem and ended with laughter and a potato chip snack. Thinking and talking about good memories, short or long term memories, is better than imagining disasters.

For the larger questions and situations we anticipate will come up in the future, we engage in more formal planning. First determine the issues that must be planned for. Then study the information you find on the topic, talk to people who have knowledge and experience in each area, and come up with a list of options. Alzheimer’s caregiver support groups are an excellent source of information. You’ll meet people there who are facing or have already faced the situations you’re planning for. You’ll find candid discussions, information based on personal experience, practical advice and suggestions. In addition, there will be a trained group leader who can direct you to even more helpful resources.

Perhaps you’ll be able to rank the options in order of your preference, perhaps even determine exactly what you think is best to do. But at the very least, when the issue comes up and it’s time to take action, you’ll have a list of options.

Information is the best defense against the what-if’s. In the weeks ahead, I’ll be writing about some of the issues I faced as my mom’s disease progressed, things like the extra complications Alzheimer’s adds to other illnesses, legal documents you may need, the decision on if and when it’s time to consider admitting your loved one to a professional care facility, hospice considerations.  Listing those subjects here makes them seem cold and clinical and clear-cut. They are none of those things—instead, they’re intimate and emotional and confusing. But as you think about them, and as you read and hear how others in your position have dealt with them, you’ll find yourself putting your own head and heart into your own personal caregiving journey. The panicky “What-if’s” will give way to deliberate consideration of wise options for the one you love and care for.    

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How long must I wrestle with my thoughts and day after day have sorrow in my heart? But I trust in your unfailing love; my heart rejoices in your salvation.  I will sing the Lord’s praise, for he has been good to me.  (Ps. 13:2,5-6 NKJV)

Dear God, time is your creation. Protect us as we travel through it, holding tight to the hands and hearts of those we care for. Protect us from fear and doubt and panic.  Remind us of your unfailing love–help us revisit the many, many times you have held us up and helped us move forward. Give us Your wisdom to see what matters, deal with what is, and plan for what will be. In Jesus’ sweet name we pray. Amen.

 

 

 

 

 

 

Can We Talk?

                One of the first things I learned about Alzheimer’s was that keeping Mom alert and engaged with those around her, even if only by means of eye contact, was a very good thing.

Mom seemed to drift further away from us when she was on her own. If she spent much time staring out the window or sitting alone in a room or dozing, she was often angry and loud, or she refused to speak and interact at all.

                Talking to Mom was one of the best defenses against that kind of disconnect. It almost didn’t matter what subject I chose, as long as I kept eye contact. I believe that made her feel included, even when she wasn’t speaking.

Eventually, yes, Alzheimer’s took away her ability to jump into a conversation, but on her best days, she could still adapt. Her first and favorite strategy, I noticed, was to decide that something – and it might be anything – was new. 

Sitting at the table in the late afternoon or evening, Mom would watch Dad and me discussing the news or his garden or what I planned for dinner.  As she raised her eyebrows higher and higher, it appeared to me she was searching for a way to join the conversation.

 Finally, “I’m talking to you,” she might say, turning to me. 

No more words yet.  I waited.  In a moment or two she’d continue.  “I see your blouse.  Is it new?” 

Probably it was an old sweatshirt I’d worn because I planned to do some cleaning.  Maybe it was stretched out and holey.  But a good day was a good day and on a good day, even a worn-out sweatshirt could be a pretty blouse.  And not just that.  Also a blessing.  A miracle.

So I’d smile at her as I answered.  “Thank you, Mama! I’ve had this for a long time.” 

“Oh,” she would breathe and then, running short on words, she’d smile and smile and shuffle her feet back and forth beneath her chair until I rescued her by asking, “Do you like it?” 

“Oh, yes, child.” Armed now with more words, Mom would look across the table to my father.  “Do you like that blouse, Daddy?”  Then, turning back to me, “Is it new?”

Since just about anything could be new to Mom on any given day, there were lots of “new” conversations. 

When Dad put a rail on the back porch steps, Mom seldom failed to mention it as she went up or down.  “Your father made this for me.  It’s new.”

The rose garden Dad and I planted was perennially new, not from season to season or week to week, but from day to day, hour to hour, whenever Mom chanced to recognize it.

For a while, even my husband’s hair was new.  It had turned gray when he was only about 40, and Mom always loved the silvery color.  But one day his hair was brand new to her.  She couldn’t tell him often enough how much she liked it. 

Again and again she said, “I like your hair, Harold.  Is that a new color?”

And Harold grinned and said, “Yes, ma’am.Your daughter gave it to me.” Mom didn’t get the joke, of course, but Harold laughed, so she laughed, and then we all laughed. A few minutes later, as she was rocking a bit and looking for a way into the conversation again, she seized on Harold’s hair again. We laughed every time.

Perhaps some tiny but well-used connection remained in her brain for a while after so many other connections had snapped or been smothered and died. Maybe that tiny connection told her that noticing something new and complimenting someone about it was a good thing to do and smiles resulted. Maybe she remembered, or maybe not.

Regardless, it was a miracle.

New miracles every day. We must watch for them. We can learn from them.

For example, I finally realized I should speak to Mom as she spoke to me. Not only using simple words and short sentences, but even choosing the subjects she chose. As tired as Dad and I became of hearing the same new questions and giving the same new answers again and again, I began to initiate the new conversations myself and let her respond. 

“Oh, look, Mama!  A surprise for us outside!  Roses!”

“What a pretty tablecloth this is!  Is it new?”

“Wow!  Shamrocks on your shoes!  I love them!”

Even if the pleasantness of the here and now had been discussed an hour ago and a day ago and many times before that, the miracle was that we could so often cheer Mom with it, even in the later years of her illness. We could remember what she had noticed and liked in the past and help her to notice it for the first time, again. We could trick the disease – make it work against itself. That was a sweet victory indeed.

“Forget the former things; do not dwell on the past.See, I am doing a new thing!Now it springs forth; do you not perceive it?I am making a way in the desert, and streams in the wasteland  (Is. 43:18-19  NIV).”

Our Father, all creativity is Yours. As we fight against Alzheimer’s every day, we will be faithful to watch for Your direction. We thank You for inspiring us with miraculous ways to help our loved ones.