Depression and Alzheimer’s

“Depression is never normal.”  

Not even for someone with dementia.

In the most recent series of posts, we’ve been spotlighting some “what-ifs”: the sudden questions that can blindside caregivers as they contemplate what challenges the future might hold. Today, however, we’re taking a side trip to look at the issue of depression and the impact it can have on a loved one with Alzheimer’s.

According to the Alzheimer’s Association, it’s not uncommon for people with Alzheimer’s to be depressed, especially in the early and middle stages of the disease. In fact, the Association says, “Experts estimate that up to 40 percent of people with Alzheimer’s disease suffer from significant depression.”

And yet, “depression is never normal.” Shortly after I became Mom’s caregiver, I heard those words from well-known Dallas-area geriatric psychiatrist Dr. David Crumpacker. He was addressing a group gathered in a comfortable public room at an assisted living facility. The subject was Alzheimer’s.

Speaking for myself, the fact that 40 percent of people diagnosed with Alzheimer’s become depressed doesn’t surprise me. But Dr. Crumpacker’s words did surprise me. “Depression is never normal.” Not even for someone with Alzheimer’s? No, not even for someone with Alzheimer’s.

What does that mean? Why did the doctor make such a point of saying that, even when someone is diagnosed with such a cruel disease as Alzheimer’s, depression shouldn’t be considered a “normal” consequence?

Because, unlike Alzheimer’s, depression can be treated. And available treatments, the Alzheimer’s Association says, can lead to “significant difference in quality of life.”

And that’s information caregivers should act on. If you even suspect the person you’re caring for is depressed, pursue a diagnosis. As with virtually everything related to the changed behaviors that accompany Alzheimer’s, the first critical step for a caregiver is letting the doctor know.

You’re probably aware that Alzheimer’s can complicate the diagnosis and treatment of other illnesses. That includes depression. For one thing, the two illnesses share some symptoms, such as isolation, loss of interest in activities and hobbies, confusion and impaired thinking. And the cognitive impairment our loved ones experience may make it more difficult for them to describe their feelings and symptoms. Because of this, the Alzheimer’s Association says, “It may be helpful to consult a geriatric psychiatrist who specializes in recognizing and treating depression in older adults.” But caregivers can begin by talking to the primary care physician.

Don’t assume that, because he or she knows your loved one has Alzheimer’s, the doctor will automatically know the issues that most dramatically affect your loved one’s health and quality of life. Moods or behavior you observe that concern you should be brought to the doctor’s attention. I emphasize this because, as a new caregiver, I wrongly assumed the doctor would take the lead. I made the mistake of thinking, “The doctor knows this disease. He knows all the important topics to be discussed, all the important problems we’re encountering in caring for Mom.  If he doesn’t bring it up while we’re here in his office, it’s not really important.”

I was wrong. But I was fortunate. The results of my mistake could have been far more serious than they were.

In the next post, I’ll describe how I learned about the effects of depression on someone with Alzheimer’s. But for now, the facts are clear:

• Depression is never normal.
• Depression is not uncommon in Alzheimer’s patients.
• Depression can be treated.
• Treatment for depression may lead to significant improvement in quality of life for the one you care for.

I’ve experienced that shift from dark to brighter; I pray you can, too.

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Why are you cast down, O my soul? And why are you disquieted within me? Hope in God, for I shall yet praise Him….   (Ps. 42:5  NKJV)

Father, be with us as we care for our loved ones. Help us to see what we need to see, and then do what is necessary to protect them. Thank You that we are never alone.

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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.

 

Tissues in Your Pocket

Most Alzheimer’s caregivers realize early on that we have little control over what any day will bring. Planning each day in advance may give us a sense of control, but so much of Alzheimer’s is unpredictable. Based on my experience, caregivers spend at least as much time reacting as acting.

One of my mom’s major goals in life was to be prepared for anything that might happen to her or her family. I remember her purse was both tool box and first aid kit, containing a screwdriver, bandages, string, scissors, various nuts and bolts she had found on streets and sidewalks—once I even saw a fish stringer in there. But the things we used most often were the tissues she always carried. She stuffed her already bulging purse with them and stashed them in every pocket on any piece of clothing she wore, “just in case.”

“Just in case.” That phrase covers a lot of territory for caregivers. We can’t predict what might happen in the next few minutes, much less the next few hours. But…unpredictable doesn’t have to mean unprepared.

For caregivers, being prepared is a state of mind.

I wish I had seen that truth earlier. Instead, of all the emotions that rolled over me during my first weeks of caring for Mom, fear was predominant.

Fear hung around long after shock left. I spent only a couple of weeks being surprised at things like Mom putting Dad’s shoes in the trash, or telling me how lovely the artificial flowers smelled at the grocery store, or accusing the neighbors of peeking into the windows. I soon learned such things were simply to be expected.

Anger lasted longer. I was angry at the disease, at my father for hiding it for so long, at myself for missing the signs, and, yes, sometimes at my mother who often seemed to enjoy the chaos she created. But after a while, anger became a motivator. My frustrations prodded me to look harder for cause and effect relationships I could use to smooth the rough road we traveled each day.

For example: I learned I didn’t always have to explain to Mom what I was going to do. Announcing I was about to brush her hair or help with her shoes often resulted in a barrage of “No’s,” maybe because she felt I was telling her what to do. So I began to say less and simply do what had to be done. When my actions were a surprise to Mom, it took a minute or two for her to puzzle them out. By that time the job was usually finished. Using the disease against itself lessened my anger and fueled my confidence.

Still, fear of catastrophe stuck around for a long time. I was afraid the time would come when I couldn’t control Mom’s anger and she or someone else would get hurt. Would I be able to get her to take her medications every day? What if I couldn’t make her get into the car? Or out of it?

Adding to the pressure of my fear was the feeling I absolutely had to make things work. I had stepped into caregiving of my own accord. No one asked me to. Dad couldn’t do it alone, and he refused to allow a nurse or professional into their home. So, ignorant of what I would be facing, I just jumped in. But after only a few weeks, I began to question whether I could manage Alzheimer’s alone. I started each day with dread, praying for help, praying for a miracle.

And you know what? Miracles came. Not the sudden cure I hoped for, but miracles nonetheless. Little ones I almost didn’t notice at first, like a close-in parking space when we were running late to an appointment. There were big ones, too, huge ones like the doctor who finally found that Alzheimer’s wasn’t the only danger Mom faced: He diagnosed her severe depression and prescribed the medication that gave her, for a while, more good days than bad.

In fact, so many miracles came my way, I began to expect them. On some otherwise-impossible days, Mom would at least agree to take her meds. When we were out of the house, I realized people seemed to sense her instability. I learned how to steer her away from situations that, I knew from experience, might provoke her anger. If she refused to get in the car, I postponed the errands and rescheduled the doctor’s appointments. If she refused to get out, I sat with her until she got tired of saying no.

Although some of the solutions worked pretty reliably over time, I knew no amount of advance planning could ever address the daily challenges of Alzheimer’s. But I was freed from paralyzing fear because I began to expect an answer in difficult situations. And because my trust was based, not on my power, but on the power and faithfulness of God, I stopped imagining disaster. Because I believed  the Giver of all good gifts, the Maker of all miracles,was on my side, I could think more quickly and clearly, come up with a way, find one more miracle.

As the Alzheimer’s progressed, Mom continued to pick up her tissues and put them in the pockets of the old green cardigan she wore every day. I took a few out every now and then, secretly of course, so she’d have room to add more. The day came, though, when it no longer occurred to her to pick them up. So Dad and I did it for her. Putting a fresh tissue, carefully folded, into her sweater pocket made us feel a bit more powerful in the face of Alzheimer’s. “Now, Mama,” I’d say. “Now we’re ready for anything.”

For me, the miracles that carried us down the rocky roads of Alzheimer’s are like tissues I saved in the pocket of my spirit. There were so many problems, but so many more miracles. And each problem solved was a promise of more solutions to come.

I pray you fill your own pockets with confidence. Begin to expect miracles. Watch for them. And in the hardest times, remember the ones God has already sent. Each one carries His assurance: He is with you, to help you. He will never leave you alone.

With a pocket full of faith, we’re ready for anything.

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You will not need to fight in this battle. Position yourselves, stand still and see the salvation of the Lord, who is with you….Do not fear or be dismayed… for the Lord is with you.     (2 Chronicles 20:17   NKJV)

Loving Father, we know You are on our side. We know You can do all things. We know You want us to come to You with our fears and our needs. Thank You for fighting on our behalf. Even in the face of Alzheimer’s, Your constant love casts out our fear.

 

Pure Pleasure

Fun is a commodity in short supply in homes where Alzheimer’s lives. Who can tell what will bring our loved ones pleasure? Well, if we pay close attention, sometimes they tell us themselves.

Searching for pleasant activities for our loved ones with Alzheimer’s is like seeking the end of the rainbow: you’re not even sure it’s out there to be found. One by one, the usual pastimes fall away. Reading a book, watching TV, sewing, crafts, even talking on the telephone—now these things bring more confusion than pleasure.

I tried working simple puzzles with Mom. I got out old photographs. I named farm animals and we (well, usually it was only I) made barnyard noises together, and at least once a week I heaped all the napkins and washcloths in a pile in front of her so she could  fold them, painstakingly, one by one by one.  All those activities were successful at some times, and decidedly not at others. So I spent lots of time searching my brain for rainbows I just couldn’t see.

And then, one particularly frazzled evening, I discovered that sometimes Mom could find her own entertainment.

It wasn’t unusual for Mom to be grumbling nonstop while Dad was trying to watch the evening news. The louder Dad turned the volume, the louder Mom talked. This night she was upset about illegal birds on the fence and dirty rats (squirrels, actually) on the lawn. I was preparing dinner as quickly as possible, when she called me out of the kitchen.  “Look, Child!” she said. I looked. She was staring at a closeup of the weatherman on TV.

“Look, Child! Look at his teeth!”

I looked again and, since some comment was clearly in order, I said, “Oh my! What nice teeth!” As the weatherman bowed out and the news anchor returned, I had an inspiration. I said, “Look, Mama. Look at his teeth.”

Thus began an hour or so of dental reviews. Mom watched for people on TV to open their mouths; when they did, she had a prompt comment on their teeth. I chipped in my opinions a few times, and we were entertained ‘til almost bed time. I never knew when Mom might begin another tooth pageant, so on ragged evenings I learned to start them myself. Sometimes it worked, sometimes not, but it was another tool in the arsenal. And Mom discovered it.Please know I’m not suggesting you try doing dental reviews to entertain the person you’re caring for. The point, of course, is that something caught Mom’s attention and I capitalized on it. She was alert and comfortable and calm for a while. That’s entertainment.

I noticed other pastimes Mom initiated. One day at the megamart, she stopped beside a display of artificial flowers. Leaning over to put her nose against the petals, she drew a deep breath. “Oh, they smell good,” she said. “Smell!” I did. From that day on, we often stopped to smell the flowers, real or artificial.

Sometimes when Dad and I were talking, I could tell Mom wanted in on the conversation. She rocked forward and back in her chair, looking from me to Dad to me to Dad. When she was finally ready to say something, it was often a compliment. Maybe something like “Child, I like your hair.” One day, instead of simply saying “Thank you!” I returned the compliment. “I like your sweater today!” With another word to use, “sweater,” she commented on my sweater, whether I was wearing one or not.  Back and forth we found other things we liked about each other. Sometimes Dad joined in, too. If Mom ran out of words, we just started all over again. During times when she was anxious, I could often calm her with a compliment. And sometimes a whole conversation would ensue.

Did these diversions always work? No. But when they did, they were pleasurable to all of us. Mom was able to take off the blinders Alzheimer’s had thrust on her and look at the world around her. She wasn’t nervous or scared, searching for words or wondering what was going to happen next. And yes, I was willing to examine every tooth, smell every flower, and compliment her ‘til the cows came home just for the pleasure of seeing her that way: engaged, comfortable, with life in her eyes.

I spent much of my time as a caregiver protecting Mom. As I watched her, I was asking myself “Everything ok? Everything ok?”  Sometimes I’m sure my caution prompted some of her anxiety. But my close attention also helped me understand something miraculous: Mom could still find pleasure, and I could help her enjoy it.

I urge you to watch, too. The key, of course, is to notice what they notice, and mirror their reactions back to them. Take your pleasure wherever you and your loved one find it. Run with it and don’t look back to see if people are watching. If they are, they’re seeing miracles.

The Lord upholds all who fall, and raises up all who are bowed down. You open Your hand and satisfy the desire of every living thing.  (Ps.145:14,16  NKJV)

Father, we thank You for the miracles You give us every day. Please continue to open our eyes to the help and comfort You are faithful to send us as we walk the Alzheimer’s road.

 

 

 

 

 

 

The Bluebird of Happiness

Often it seems nothing we can do or say will bring happiness to our loved ones with Alzheimer’s. Since they gradually lose the power to choose their own pleasure, caregivers are left to use trial and error to guess what might bring a smile.

For me, when often became even more often, and even more often became ‘way too often, I re-discovered a happiness strategy from back before I was a daily caregiver…back when I was a daily mom. What I remembered is this:

Sometimes it’s what we don’t do that makes the difference between sullen and happy in those we care for.

I remembered the occasional evenings when I allowed my sons to skip a vegetable at dinner time…and decided maybe Mom didn’t need to wear fresh clothes every day. Some days I didn’t insist she drink a full glass of water at every meal; if she wanted juice at lunchtime, that was fine. No socks with her tennis shoes today? OK.

When I let some things slide, I found that, even if I couldn’t always get her to smile, I could at least erase her frown.

Why was it that skipping an action worked better doing something?

I believe the “never mind’s” worked better because the “please do’s” were beyond Mom’s grasp. She was able to let me know if something we were doing was UNpleasant, but she could no longer think of things she might enjoy. Or maybe she could think of some things some times, but she wasn’t able to put them into words.

The things we skipped depended, of course, on our activities for the day and, even more so, on Mom’s safety and hygiene. If we had a doctor’s appointment scheduled, I couldn’t let Mom go out without shoes. And we always had to keep her hands clean. Getting Mom to take her medications was a must; making sure she drank enough fluids was a must; and there had to be a limit to how many days she could wear her favorite outfit without washing it.

The “must’s” were seldom easy. But they were possible. How? By accommodating Mom’s wishes the same way I used to accommodate my children. I said yes as often as possible and insisted on no when it was necessary.

And I went a step further with Mom. When I had to insist she do something my way, I tried to include an enticement of some kind.For example:

If Mom scowled when I came toward her with shoes in my hand, sometimes—on days when I knew she could stay indoors—I was able to agree: “No shoes? OK.” But if we had to go out, I had to insist. “Well, you’re going to need shoes today. But here…why don’t you feed Charley-Dog some treats while I help you get your sandals on?” I knew feeding Charley was a fun–and dependable–distraction.

If Mom refused her lunch, I could say, “OK, but I’m afraid you’ll be hungry later. Tell me if you are, please.” If, however, she had already skipped breakfast, I had to insist she eat at least a few bites. And I usually had to feed her myself. Beginning with a potato chip got us off to a good start, and a couple more interspersed through the process helped me keep things moving.

When it came to clothes, I almost always let Mom wear her threadbare or hole-y favorites, which I put through the washer and dryer after she went to bed. As long as she was clean, dry, and modest, she was fine to go wherever we had to go. If her old clothes made her feel better, we were happy for her to wear them.

Please understand: when I say I used  some of the same strategies with Mom that I used with my children, I mean no disrespect to her. Alzheimer’s had robbed her of reason, judgement, and self-control. To expect things from her she could no longer give would have been cruel. Instead, I simply made it easier for Mom to go along with the necessities. And I had no fear of her expecting the same “privileges” every day–each day was all too new for her. I believe Mom remembered me and Dad when she awakened in the mornings; that much memory allowed her to trust us, at least most of the time.

Our loved ones with Alzheimer’s travel through life constantly on the edge: not remembering where they’ve been, unable to see where their next steps will take them. So it’s up to us to be flexible. We must make their paths as wide and comfortable as we can, by putting as few demands on them as possible.

Happiness for someone with Alzheimer’s? I think it’s like a little bird, a nervous little bird, to be sure, but willing to rest in a spot feathered with reassurance and safety. If we provide a house and fill it with all the comfort and security we can manage,

even if we don’t often see the little bird, we can trust that our loved ones are all right.

Blessed are those who have regard for the weak; the Lord delivers them in times of trouble. The Lord protects and preserves them—they are counted among the blessed in the land….  (Ps. 41:1-2  NIV)

Lord, you are the source of all our wisdom. When we turn to you and ask for help, you always answer. Thank You for helping us help our loved ones.

Holding On

The last on our list of “The Hardest Things” for caregivers to deal with is loss of our identity. We have been someone special to our loved one; now we could be anybody.

Or nobody.

People with Alzheimer’s, their own personalities long since stripped away by the disease, can eventually lose the ability to identify even those who are closest to them. Not just names are lost, but also faces and voices and the feeling of family or friendship. This effect of the disease arrives sooner for some patients, later for others. Those who escape it do so by virtue of dying before they experience it.

For the Alzheimer’s patient, all connections are dissolved. He or she is alone.

For the forgotten sons or daughters or spouse or friends, loss of identity in relation to their loved one is exquisitely painful. The caregiver has now become a stranger. In especially cruel cases, unknown loved ones and caregivers may provoke fear or anger in an Alzheimer’s patient. But even if caregivers are perceived to be kind and helpful, they’ve become kind, helpful strangers.

One reader told me he is an only child, caring for his mother who has Alzheimer’s. She asks him repeatedly if he knows her son. He tries to tell her he is her son, but she doesn’t believe him. She continues to ask.

Perhaps you’re the spouse of an Alzheimer’s patient. You and your wife are together virtually every minute of the day, yet she never says your name anymore. There’s no glimmer of recognition in her eyes when she looks at you. The years you’ve been married appear to count for nothing now.

Maybe a faithful friend who visits your loved one regularly is no longer greeted with a smile, but with a blank face instead. The friend is heartbroken. She believes she’s of no help anymore.

When we’re no longer known by those we love most, the lack of connection leads to a lack of words, an emptiness that’s hard to describe. The person with Alzheimer’s is beyond the point of recognizing the loss. But the caregiver, the son, daughter, spouse, friend—these people suddenly experience what may be the most devastating pain inflicted by the disease: where once we were needed, special, able to touch the heart if not the mind of our loved one, now we’re invisible.

It’s easy to understand the caregiver’s thought that maybe now is the time to give up.

Fatigue and despair tell us, The road is too hard. The non-stop work doesn’t improve anything; it only brings you closer to the end. You can’t hide the pain anymore. It’s too big to carry. Surely someone else can do the job now. Your name means nothing to your Mom anymore. Anyone else’s face could take the place of yours; anyone else’s hands could do what yours do. You’re lost to your mother now. She’s lost to you.

But have we truly lost our connection with the one we’re caring for? I don’t think so. We just have to carry it on our own now. It’s up to us to hang on to it through the hardest times of Alzheimer’s. The person we’re caring for has been robbed of the ability to live out her identity, but she is still the person she was before Alzheimer’s. The relationship we had still exists; it’s just that now, only one of us is able to make the connection visible. The curves and angles, the highs and lows, the deep and the wide—one of us must keep them now for both of us.

Since any time is a good time to bring in help with caregiving tasks, now is perfect. Since it’s always helpful to share thoughts and feelings with someone who will listen with mind and heart, now’s a great time for that, too. It’s a fine time for a break, to get away for a while, to rest mind, heart, and body. I pray you do those things.

Because if you do, or maybe even if you don’t, you’ll be in a better position to see the real nature of your caregiving. The bigger picture. Perhaps at this point, with no more rewards of a smile, a few words, a pat of recognition, you’ll finally understand that the caregiving has been a gift. To both of you. Every facet of it has defined or reinforced who you are in relation to the one you care for. And you affirm the identity of your loved one, also. As long as you relate to her as a daughter, she is still a mother. As long as you care for him as your spouse, he is still a husband.

Though our loved ones have been robbed of the ability to live out their own identity, they are still God’s unique creations. When we’re with them, holding the essence of our relationships in our hearts and in our caring hands, the people we care for are real. They maintain their person-hood.

They live bigger than Alzheimer’s. And that’s a victory.

 But now, this is what the Lord says–he who created you…he who formed you…:”Do not fear, for I have redeemed you; I have summoned you by name; you are mine.”

Is. 43:1  NIV)

Father of us all, You know who we are. You made each of us unique. Help us as we guide our loved ones on their journey back to their true identities, back home to You. Thank You for Your assurance that we are all loved, each one as if there were only one. Show us how to give You glory, Lord. Amen.

The Hardest Things — Withdrawal

On the list of issues caregivers find hardest to deal with, withdrawal is one of the most challenging. If a loved one begins a sentence and suddenly finds she can’t come up with a word she needs, she’ll probably hesitate to speak up next time. If she asks a question and is told she’s already been given the information she wants, many times in fact, she may decide to live in ignorance rather than ask questions. When she sees a familiar face in a family gathering but can’t identify the person by name, much less relationship, it’s easy to understand why she might retire to a corner.

Because it’s so easy to imagine why someone with Alzheimer’s would shrink from social interaction, it’s difficult, at least at first, to see how to keep them connected to family and friends.

One of the first things I learned as a caregiver had to do with this very issue. Soon after my mother began displaying symptoms of dementia, experience convinced me that keeping her as involved as possible in the current moment was beneficial. Her mood was more stable and her mind less confused when we kept her attention focused on the activity around her. But I watched her interact less and less day by day.

So what can we do to keep our loved ones “present” in our lives – and their own – for as long as possible? Here are some suggestions.

Talk to – not around – your loved one.   As Mom lost the ability to carry on conversation, I realized Dad and I were prone to talk around her. Sometimes, eyebrows raised, she leaned forward in her chair, looking at us, smiling broadly when she caught someone’s eye. I thought she might need something, but when I asked she shook her head. Did she have something to say? No. She kept smiling but said nothing.

I tried to remember for her: what did her conversations look like? Before Alzheimer’s, a wink, taps on my knee under the table, and “secrets” whispered in my ear were trademark facets of a conversation with Mom. So as Dad and I talked, I smiled at her, winked, and sometimes whispered comments to her. And it worked, at least sometimes. She stayed with us instead of retreating to her couch. She smiled when we smiled, frowned when our voices got more serious, and sometimes even interjected a comment.

Talk simply.   In the middle of a conversation with Dad on the economy, I’d take a break to ask Mom a simple question, like “Do you like my earrings?” Sometimes she answered. But even if she didn’t, I continued to talk directly – and only – to her. “I wasn’t sure they’d go with this color, but I think they’re okay, don’t you?” I learned not to say too much at one time; Mom tended to lose track and get nervous. I also learned to brace myself for her sometimes unkind or critical replies. But often such an interruption to my talk with Dad reaped sweet rewards: a smile, maybe a pat on the hand, sometimes even that “connected” look in her eyes.

As far as possible, stick with the familiar.   The more familiar the surroundings, the people, the activity, the more comfortable your loved one will be. For Mom, being at home eating a meal with Dad, and maybe my sister and me and our husbands, was clearly easiest for Mom to enjoy. Eating a meal with me and Dad at the super-center was good, too. Mom’s comfort didn’t extend far beyond those boundaries.

Pets are good.   If you don’t have a pet, the onset of Alzheimer’s probably isn’t the best time to get one. But if your family already includes one, you probably know what a help they can be. My parents had Charley-Dog, a usually scruffy but sometimes quite handsome silver miniature poodle. Charley was a sweet constant in Mom’s days.

  

He offered warmth and affection without making any demands on her memory or requiring any cooperation from her. He could make her smile when nothing else worked. Even when she refused to speak to me and Dad, Mom could always interact with Charley.

And keep in mind that even if your pet makes no noise and eats no food, it still offers your loved one unconditional love.

If someone lives long enough with Alzheimer’s, their virtually complete withdrawal from the world around them is inevitable. But there are ways to keep them “with us” longer. Yes, in this area as in most issues associated with Alzheimer’s, we’ll be operating on a trial and error basis: maybe this way will work, maybe not; maybe it won’t this time, but it might next time. Still, in my experience, the effort is well worth the expenditure of time and creativity. I strongly believe that the chance to express herself in an easy way, with a nod or a yes or no answer, let Mom feel some power. I think it helped her maintain her place in the family.

Though I have fallen, I will rise.
Though I sit in darkness, the LORD will be my light (Micah 7:8 NIV).

You are our strength, Lord. You show us the way when all seems lost. You keep us trying when we might give up. Bless our loved ones, Lord, and inspire and enlighten our efforts to help them.

 

 

The Hardest Things — Mood Swings

The next item on our list of the hardest things for Alzheimer’s caregivers to deal with: mood swings.

Though in the beginning stages of Alzheimer’s there are good days and difficult days, as the disease progresses, the good times may shorten to hours. In one day, those with Alzheimer’s may experience occasions when their minds function well, interrupted by periods when they’re ambushed by symptoms like confusion, anxiety, or inability to find words.

Our loved ones feel the shocks again and again: being told their questions have been asked and answered many times already; finding themselves unable to balance a checkbook or follow a recipe; hesitating with a telephone or garage opener in their hands because the device doesn’t look familiar any more.

Alzheimer’s doesn’t fire a warning shot. It just attacks.

It’s no wonder, then, that our loved ones’ moods fluctuate, even in the earliest stages. The fear aroused by the onslaught of symptoms, the relief when symptoms go away—as sensitive as caregivers are to those feelings, the people we care for are immensely more so.

So…how to help them through mood swings? Here are four strategies.

1. Talk to them.
Early in the disease, our loved ones can tell us, more or less, how they’re feeling and why. Whether they choose to or not is a separate question. But even if they don’t, I believe it helps to talk to them. And the best help we can give them is truth. Positive, affirming truth—it will help your loved one and you, too. You may or may not want to talk specifically about Alzheimer’s, but you surely can reassure them with matter-of-fact statements like:
• Yes, you get confused but I’m here to help you.
• I want to be here; I want to help you.
• You aren’t alone. We’re a team.
• We’ll be fine.
I found my mother’s reactions to those assurances usually matched the tone I used when I spoke. If my voice conveyed sadness or fear about the situation, I think she felt her fear or anger being validated. But if I spoke simply, and said the words as if they had always been the facts of our relationship, she caught my calm.

2. Agree with them.
It’s never beneficial to argue with someone who has Alzheimer’s. Our words won’t make our loved ones disbelieve their reality: they are certain the bath water is too hot, sure the dog ran away, positive someone stole the car. Instead of telling them they’re wrong, we do better to agree with them.

3. Demonstrate to them, in the most visible way possible, that we accept their reality. In other words, whether it’s perceived or real, fix the problem.
“Well, Mom, no wonder you’re upset. Let me test this water again/see what I can do about Charley-Dog/go check on the car.” Then do it. Stick your hand in the water and turn on the cold tap, even if only for a second. Go find the dog; bring him into the room, if necessary. Go outside to check on the car. When you return, you can say the absolute truth: things are okay.

4. Use distractions to capture their attention and direct it elsewhere.
As the disease progresses, the causes of change in mood won’t be as clear or reasonable. Distractions—maybe a new task, caring for a pet, food, a walk—may help to ease our loved ones away from the extremes of negative moods. Use your imagination. You’re the best judge of what might calm frayed emotions or attract your loved one’s attention sufficiently to dispel bad feelings.

Two important notes:
• If you don’t already have a pet at the onset of Alzheimer’s, this may not be a good time to get one. Things our loved ones perceive as new or different can cause them even more anxiety.
• It’s important to keep the doctor aware of changes in mood and emotions. Depression is not uncommon in older adults, and it can add immeasurably to the challenges of Alzheimer’s. Moreover, depression can often be treated, giving you and your loved one better days and more of them.

If we were talking about a textbook patient, perhaps we could more readily think of ways to calm the fear or defuse the frustration. But these are people we know and love. Their pain and fear become ours, and sometimes we find ourselves in the swing next to them, flying forward with optimism, then backward to despair.

And of course we must bear in mind that what worked last time may not work this time. But, with the resilience of a caregiver, right after we accept that fact, we must insist that it just might work next time.

Resilience. As dementia steals it from those we care for, we must stockpile it. We have to develop more and more of it, enough to fight the monster and keep our loved ones living well the life they have.

Though I walk in the midst of trouble, You will revive me… (Ps. 138:7 NKJ).

Lord, we know You are always here. Help us to be aware, not only of Your presence, but of Your very real assistance as we fight for the ones we love. May we be sensitive to Your promptings, knowing that You are able to keep them safe, to keep them living in the best ways possible, in spite of the cruelties of Alzheimer’s.

 

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.

• 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.

The 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.

How to Handle Sadness

Sadness stalks caregivers. It’s brazen, approaching us with no regard for where we are or what we’re doing.

Early on, the disease that has attacked our loved ones plants a dull ache in our hearts. Without warning, the ache can become a sharp pain, sharp enough to overwhelm us. A caregiver overwhelmed by sorrow cannot give care. So we must arm ourselves in advance with healthy ways of handling sadness.

First, a few things to avoid.

• Don’t deny your sorrow, to yourself or anyone else.

If you try to pretend you’re not feeling pain when you are, at some point your mind and body will rebel. Using the tools they have, they will insist you acknowledge your feelings, first to yourself and also, at least to some degree, to those who know and love you. Their tools are formidable: insomnia, lack of appetite, depressed mood, and inability to concentrate are a few.

• At the same time, don’t go looking for sorrow.

Chronicling the progression of the disease is a good practice, but it tempts us to watch only for the negatives. In addition to noting new incapacities, keep track of your loved one’s capabilities. Look—actively, intentionally—for things to be thankful for.

• Don’t feel guilty because you’re not sad.

Maybe you think you should be sad when you take a break from caregiving, but you’re not. Maybe you think you should feel sad when your loved one must be moved to a care facility, but you don’t. The truth is, we don’t order up our feelings. They’re delivered to us at wildly random times in plain unmarked packages. There are no rules to govern them. The only thing we can control is our response to them. Responding to lack of sorrow by trying to manufacture guilt doesn’t make sense.

• Don’t project your feelings on your loved one.

This is something I used to do with my mom. An example: I’d be brushing Mom’s hair in front of the bathroom mirror, remembering how her hair used to hang in long waves, shining clean, around her face. Seeing it as it was in the mirror—short, straight, dirty—led me to mourn the stylish woman she used to be. And because she could see everything I saw, I decided she must be sad, too, at growing old, with her hair and clothes so different from the past. So I’d start comforting her—both of us, really. The results became predictable: either she heard the emotion in my voice and became sad along with me, or she’d hear and not understand, which made her angry. Obviously, neither was good. I urge you to assume nothing with regard to the one you care for; instead, take your cues from them.

 

So what are the actions we can take to handle the sorrow of Alzheimer’s in a healthy way?

• Talk about your feelings with someone you trust.

Maybe this will be a good friend, or your spouse or pastor. Another excellent place to share feelings is at an Alzheimer’s support group meeting. The simple act of honest sharing with someone who cares about us, with people who have experienced what we’re going through, somehow brings relief. Once we shine the light on the truth, we no longer have to hide from it, or bear it on our own. In addition, the person we talk to can probably see the situation more objectively, and may be able to make helpful suggestions. Options—they’re always out there, just hard, at times, to see.

• Allow yourself to be comforted.

This goes along with “Don’t deny the sadness.” Allowing others to comfort us emotionally and even assist with the tasks of caregiving means setting aside our ego. We must be able to say, “This is difficult. I need help.” Asking for help makes us stronger, not weaker; more effective, not less.

• Journal about your sorrow.

Putting our feelings into words on paper can bring us much the same kind of relief as talking to a friend. While the paper doesn’t respond to us with words of understanding and care, the act of simply writing whatever comes to mind, knowing we are the only ones who will read it, frees us to be absolutely honest. Journaling can reveal and help us to understand thoughts and emotions and ideas we didn’t know we had.

• Replace sad thoughts with happier truths.

Simply telling ourselves not to dwell on sad events and feelings doesn’t work. In fact, just pushing thoughts away can make it even harder to get rid of them. The better practice is to capture negative thoughts, send them away, but fill the hole they leave with another thought, one that is both positive and true. For example, instead of dwelling on “Dad didn’t recognize me yesterday,” concentrate on “Dad still trusts me to help him.” Replace “Mom hardly talks anymore” with “Mom likes it when I tell her the old family stories.” And don’t have the positive statements only as replacements; remind yourself of them often. “Chocolate ice cream is still Dad’s favorite.” “Sometimes Mom smiles when I sing.” “Dad still enjoys big hugs.” The more we speak the positive truth, the more we—and our loved ones—benefit.

• And, of course, we can pray about our sadness.

The Lord doesn’t promise to take away pain in our earthly life, but He says He’ll never abandon us to it. He sends His comfort through our friends and family, in nature and music and beauty of all kinds, in ways we can feel with our senses and in secret ways only He and we know.

We caregivers can’t escape sadness. Watching a loved one, in spite of all our best effort, lose more and more of life can seem unbearably sad. But we are called to care. And so we’re enabled to bear the pain—not walk through it as if it weren’t there, but bear it, carry it with us as we help our loved ones on their way to an eternity free of all pain and sorrow. Their future makes our burden lighter.

“Surely He took up our infirmities and carried our sorrows….and by His wounds we are healed” (Isaiah 53:4,5 NIV).

Lord Jesus, as we see the suffering of our loved ones, You alone know the heaviness of our hearts. Comfort us, please, with Your love and care, so that we may be comfort for others.