A Big Mistake

My father was going blind when I began helping him care for Mom. There was a lot he couldn’t see: how dirty her hands were, the stains on the shirt she’d been wearing all week, the mold on the cheese he and Mom were still eating. Dad thought he’d been doing a bang-up job with taking care of Mom and the house and the shopping and laundry, and I couldn’t bear to burst his bubble.

So I made a big mistake: I didn’t mention the dirt. I just cleaned it up.

red error

Some days I found it hard to climb the three steps to the porch, put my key in the lock, and sing out a cheery “Good morning!” to Mom and Dad. There was no way of predicting how Mom would feel and act—would this be the day I feared most, when I couldn’t find a way to calm Mom down and had to call for help? I knew Dad felt the same dread—I could read it on his face—but I wanted him to be able to relax while I was there.

So I made a big mistake: I smiled and acted calm all the time, happy and confident and never flustered.bad idea

When Dad and I took Mom to the clinic, the doctor directed most of his questions to me. I didn’t want Dad to feel insulted that the doctor turned to the patient’s daughter instead of her husband.

So I made a big mistake: I sat back and let Dad answer all the doctor’s questions. If I had anything to add or correct, I did it by telephone later.

error

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I didn’t recognize my actions as the mistakes they were until Mom was no longer in my care. As she lay in a hospital bed after surgery for a broken hip, the hospital social worker told us Mom would be released, but only to a care facility. She was unable to do the necessary rehab and wasn’t strong enough to go home. She had to go to place where skilled staff could meet her needs.

Dad shook his head. “No. She won‘t go to one of those homes.” When I didn’t immediately back him up, he turned to me with a look of shock. “We can do this, Katrinka. There’s no need to send her anywhere. We can do it at home, right?”

My father was a  reserved man, but virtually everyone who met him came to know one critical fact about him: he lived for my mother. He needed no one but her. Wanted no one but her. And from the very beginning of our journey through Alzheimer’s, I knew his one goal was to keep her at home. With him.

So my heart broke to hear his plea: “We can do this, Katrinka, right?”

He expected me to say yes. To smile with a can-do attitude, let him do all the talking, let him make the decisions.

That’s when I realized the mistakes I’d been making. Essentially, I had lied to Dad.

  • I had let Dad think he’d done a great job caring for Mom before I stepped in to help, keeping from him the dangers posed to both of them due to his bad eyesight.
  • I had purposely let him think that taking care of Mom (and him) was no problem for me at all.
  • I had let him assume that he was alone responsible for directing the doctor, that all decisions about Mom’s care were based on his input alone.

lie truth

I should been frank about the sometimes filthy conditions he and Mom had lived in. I should have told him how overwhelmed I felt, how exhausted I was handling the caregiving alone—especially since it might have prompted him to share his own feelings with me.  I should have spoken to the doctor in front of Dad, so he’d know that what he saw of Mom and her illness was limited by what he wanted to believe, and that the doctor needed to hear all the truth in order to keep Mom as healthy as possible.

I should have told Dad the truth.  Telling the truth back then might have eased the pain I was about to inflict by speaking to him now what he had to hear.

“Daddy, no,” I said. The social worker stepped back to give us some privacy.  “We can’t do it at home. This is different.”

His square hands hung at his sides in a way I’d never seen before. I was used to seeing them hold something—a wrench, a hammer, clothes for Mom or a glass of juice. Or if they weren’t working, they were thrust in his pockets, jangling his change and car keys. Now they just hung from his wrists with nothing to do.

In the face of his pain, I willed myself to continue. “Mom needs more care now than you and I know how to give, Daddy. It’s up to us to see that she gets what she needs. We have to let this happen.”

It did happen. More swiftly and smoothly than I could have imagined. In his relentlessly hopeful way, Dad spoke of it as a temporary situation, just while Mom rested and regained her strength. Then she’d be back home with him. Again, I didn’t contradict him. It was far too late for that now.

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My point for other caregivers is this: Be honest. Don’t pretend.  Do what you have to do; say what you have to say.reality

In my case, the truth might have resulted in better care for Mom. Being truthful with Dad would have shown him far more respect than trying to protect him from hard realities. And being honest in expressing my feelings and asking for help would have resulted in a better situation for all of us—Mom, Dad, me, and my family.

I thought I was being kind. I wasn’t. I thought I was being strong. I wasn’t. I thought I was protecting Dad. But I was trying to protect myself, too. It didn’t work. Trust me: facing the pain together—from the very beginning—would have been easier on both of us.

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He shall cover you with His feathers, And under His wings you shall take refuge;
His truth shall be your shield and buckler.  (Ps 91:4  NKJV)

Father, with You there is strength in the face of all difficulty and pain. Be with us, we pray, and help us serve and protect our loved ones with the shield of Your truth and mercy.

 

The Choices We Make

Some decisions are harder to make than others. And usually the most difficult decisions must be made in the most stressful circumstances. No wonder we don’t always choose the best solutions to the agonizing challenges of Alzheimer’s.

Drawing a line in the sand in the beginning of the caregiving journey isn’t a good idea. It leads us to believe we have no options. The truth is, we always have options. 

My father was losing his sight due to macular degeneration, but he refused to let “strangers” come into their home to help him care for my mother. He also vowed never to put her in a care facility.

lonely beachHe justified the first decision by saying “I don’t want someone else in this house. I’d feel invaded.” In other words, that choice was motivated by his personal preference for privacy.

The second choice he justified on the basis of his experience with his own mother many years earlier. When my grandmother was bedridden as a result of a stroke, one or another of my father’s siblings arranged for her to live in what was then called “a nursing home.” My father visited her one time, with me and my sister. We wandered the halls and finally found her room by the sound of her crying “Help me help me help me.” We entered to see Grandmother lying naked on top of the bedclothes. Dad’s first reaction was a shout at me and my sister: “Get out!” As we scuttled out the door, we heard him cursing at all the nurses and doctors who were nowhere close enough to hear him.  Years later, I wasn’t surprised to hear his promise to keep Mom out of a care facility. She was better off at home with him, he said, just the two of them.

storm beachSo I stepped in to help care for Mom.  Someone had to.  Untrained, inexperienced, and, yes, frightened of what the future might look like, I spent most of my days at their home, returning to my family after dinner. As grueling as the schedule was, as difficult as the challenges became, Dad and I managed. But only with the help of God. He alone could have helped me come up with the practical ideas I came to call miracles. I tried out first one and then another and then another until the problem of the day—or the hour—was addressed. With His help, we not only survived, but Mom was able to enjoy pleasures we thought were long past.picnic beachStill…I should have pushed Dad harder to get professional help. A trained aide would have added greatly to Mom’s safety, especially with bathing and other issues of hygiene. I was surprised to see that, when Mom did have to be hospitalized for a broken hip, she gave the nurses much more cooperation than Dad and I had enjoyed.  Later, because she couldn’t do the rehab necessary to walk again, the doctors said she must go to a care facility after all. We feared she’d fight the caregivers there, engage in the long term shouting matches we had experienced at home, or refuse to eat, drink, take her medications.  None of that happened. Mom was calmer and seemed much more comfortable at Golden Acres than she had at home. Dad visited every day. He made lots of new friends among the “strangers” at the home, and was free to enjoy more activities both at home and away than he had in years.

oler men at beachSo Dad’s decision to reject outside help worked out ok. But in hindsight, I see that everyone—Mom, Dad, and I—would have been better off with the additional expertise of a professional. No less important, Dad and I would have benefitted greatly from some time away from caregiving.  Three or four hours a week in the beginning, three or so days a week as the disease progressed—having that kind of help would have allowed all of us to enjoy more of Mom’s last years.

In addition, I see that, because the doctor overruled Dad’s decision to keep Mom out of a care facility, her last weeks were comfortable for both of them. Someone else, not Dad or I, talked her into eating and taking her medications.  Someone else took care of her hygiene.  Which left Dad with the opportunity to just spend time with her. He could see for himself she was not upset to be away from him. He could see her needs were met. And he could see in her eyes that, even in a place strange to her, she still knew him.

beach lineMy point is that lines drawn in the sand at the beginning of a caregiving journey may be erased. Tides such as additional information, progression of the disease, or just clearer thinking can wash away the logic or emotions of early decisions. What’s important to remember is that we always have options. If we can’t see them, someone less involved often can.  

We have to believe. Believing we have choices helps us find them.

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Save me, O God! For the waters have come up to my neck. I sink in deep mire, Where there is no standing; I have come into deep waters….

Hear me, O Lord, for Your lovingkindness is good;
Turn to me according to the multitude of Your tender mercies.   (Ps. 69:1-2,16  NKJV)

Father, please give us wisdom to care for our loved ones. When we struggle to help them, let us seek Your guidance. Remind us that You are always with us, and Your desire is to give us and our loved ones abundant life. Thank You, Lord.

 

Surprise! Can Help You

You can often win cooperation from the one you are caring for by using the element of surprise.  What I mean by surprise is this:

You don’t have to announce everything that’s about to happen.

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Some days, Mom’s go-to answer was “No.”  “No” from breakfast to bedtime and everything in between. In spite of her refusals, life had to go on.

I remember well the times I felt extreme embarrassment when I went out in public with my mother. Her clothes were seldom fresh. Her shoes, white tennis shoes dotted with green shamrocks, were tan—brown in places—with spots of indistinguishable color. Worse than her clothes was her physical appearance. Her hair brought to mind a dirty door mat sitting crooked on her head. Her fingernails were long and tobacco-stained. The crust of untreated conjunctivitis lined the edges of her eyes.

As we walked into the grocery store or post office or bank, I usually felt a red-hot blush sweep up from my neck to my forehead. I thought I saw the greeter, the clerk, the customers staring at us, aghast at Mom’s appearance and wondering why I didn’t take better care of her. Of course, most of them had no way of knowing how difficult it was to get Mom dressed at all.

We know that Alzheimer’s wants it all. Not content to steal its victims’ memory, knowledge, judgment, and physical and emotional health, it will also take every shred of their dignity.

If we let it. We need a strategy. 

The subject of a caregiver’s embarrassment and imagined judgment from others is an important one which has been discussed on this blog and will be again. But the point I’m making here is this: I found a way to ease the struggle. Surprise!

shoes on the floorHere’s an example. A typical morning might include a conversation like this:

I start with great enthusiasm and a big smile. “OK, Mama, let’s get your shoes on!’

“I don’t need any shoes.”

Uh-oh. “Well,” I say with a hopeful chuckle, “you don’t want to go outside barefoot, do you?”

“I don’t want to go outside.”

“But we’re going out to breakfast!” I say.

Mom smiles. I knew that would work. I smile back.

I put her shoes on the floor beside her feet, kneel down, and reach for her left foot.  Faster than she’s moved all morning, she pulls both feet back and hides them under her chair.

“I don’t need any shoes.”

So we’d wait a few minutes and repeat the whole process again. And again. Sometimes it was lunch time before we made it to breakfast. Sometimes we didn’t get to breakfast—or the bank or the store or wherever—at all.

Lack of cooperation is something most caregivers experience. It can move from the level of frustration—“I don’t need any shoes”—to danger—“I don’t need those pills.” Here’s my suggestion:

Don’t announce what you’re going to do. Let your loved one be surprised!!

As a new caregiver, I thought I could keep Mom calmer by telling her in advance everything that was about to happen. As the disease worsened, however, I could see that my explaining what was going on became another source of confusion for her. She began to fight any change I suggested.

So I stopped suggesting and started surprising. I learned that—to use our example—sometimes the easiest way to put Mom’s shoes on her was to put the shoes beside her chair, kneel in front of her, lift her left foot, and put the shoe on it. Without stopping or even looking up, I’d move to the other foot. When both shoes were on, I’d make eye contact, smile, and talk to her about something that had nothing to do with shoes.

ballet shoesWhat happened? Here’s how I explain the success of the method:  When our loved ones refuse to cooperate, I believe it’s because their power-word is—and always has been—“no.” I think some vestige of memory or instinct leads them to protect themselves from the unknown. Whether with their mouths or their actions, they just say no.

But in the case of our shoe-example, Mom had no chance to say no. I believe the surprise of me lifting her foot consumed all Mom’s attention.  My saying nothing about shoes, either before or after, let the event slide by too quickly for her to complain. And because her mind couldn’t take in or process the actions I took, she was as surprised the next day as she was the first.

[The surprise method can be effective in many situations. I was especially grateful I could use it to get Mom in the bathtub.  A later post will explain that process in detail.]

Maybe my reasoning is flawed as to why this simple method works, but I can tell you from my own experience and that of other caregivers I’ve shared it with — it does work. Not all the time, but blessedly often.

dignity and shoesAnd it preserves dignity. Our loved ones with Alzheimer’s reach a point where they don’t know how they look or smell or act. They no longer understand the concept of dignity and wouldn’t know if they lost it. But we know. Caregivers know. If we let those living with Alzheimer’s descend below the level of their God-given human dignity, we have failed them. Once I understood that, my embarrassment at Mom’s appearance turned to new respect for her.

The last gifts we can give our loved ones live on after they themselves are gone: their dignity, our respect.

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In You, O Lord, I put my trust;
Let me never be put to shame.
Deliver me in Your righteousness, and cause me to escape;
Incline Your ear to me, and save me.
Be my strong refuge,
To which I may resort continually;
You have given the commandment to save me,
For You are my rock and my fortress.  (Ps. 71:1-3  NKJV)

Dear God our Father, You chose to create each one of us. You created each of us in your likeness. Please help us to care for our loved ones; may we look at them and see You.

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.

angry bluebirdFor 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.

slim bluebirdWhen 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.snowy bluebirdFor 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.

nervous bluebirdHappiness 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,

flying homeeven 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.

Do They Know We Love Them?

How can we show them our love?

It’s a painful question most caregivers must eventually face. How can we help someone with Alzheimer’s know, believe, trust our love?IMG_0064In the beginning, we caregivers are almost as confused as those we care for. We struggle mightily to appreciate the difference between our loved ones’ willful actions and the words and actions dictated by Alzheimer’s. We ache with the knowledge of what is to come. We do our best to do it all, do everything for them, and yet everything grows every day and what we do is never enough.

Meanwhile our own fear and frustration are a weight we carry, not entirely invisible, revealed in sighs and frowns and impatient words. Time passes while we learn more about the disease and the role we must play.not quite full moonIf we’re wise, we ask for help and accept it when it’s offered. We take care of ourselves as well as our loved ones and in doing so, we keep going. For them.

And eventually we realize that everything we’ve done for them has also been for ourselves. Looking back to before Alzheimer’s, we realize: we’re different. Whether we’ve seen it as a duty to them, a job no one else could or would do, a way to repay the love and care we’ve received, or a privilege we’ve been accorded, our care for loved ones with Alzheimer’s has made us grow.

But we can’t avoid the ugly truth: while we’ve been growing through the pain and the work and the caring, our loved ones have been shrinking. moonliteThough we do our best to see them as they were, we must admit they’ve changed.We can’t see the mother she was, the father he was; can’t imagine her twisted hands sewing a wedding dress, his crooked fingers tightening a bicycle chain; can’t hear the words she used to sing while she polished the floor on her hands and knees; can’t feel the solid safety of his arms as he carried us asleep from car to bed.

We can’t see them as they were. But we remember.

And they remember, too. They must. Somewhere inside our loved ones, they still know what love is, and the memories remain. Where else would they go? They weren’t flesh that they could die, so we have to believe they live on, out of reach because of Alzheimer’s, but living in spite of it.

In those memories, they know our love. They remember when we helped them dress and held the spoon they couldn’t manage. They remember how gently we washed them and how slowly we walked with them and how often we answered their questions. They haven’t forgotten, at least not forever.IMG_0071So it’s up to us. We can choose to trust in the pain we see, the sadness of their forgetting; or we can choose to believe in the joy of the unseen, the happiness of their remembering.

For me, it’s an easy choice. I choose joy.

I would have lost heart, unless I had believed that I would see the goodness of the LORD in the land of the living. (Ps. 27:13 NKJV)

Lord, help us to believe. Help us to trust that in Your perfect care for our loved ones, You make certain they know we love them. Thank You, Father that our love for them is only a shadow of Yours. Thank You for being our Guide through the wilderness of Alzheimer’s.

A Different Kind of Gratitude

Thankfulness that  what-might-have-been  wasn’t  is a different kind of gratitude.

Most of us express it from time to time. Something bad happens and we say, “Oh thank goodness! It could have been so much worse!”  Nothing good has occurred, but we’re thankful anyway.

Relief in the face of difficulty is still relief. Ask any Alzheimer’s caregiver.

But first give us time to regain our balance. A diagnosis of Alzheimer’s is like a punch in the stomach. It knocks the breath out of patient and caregiver alike. The shadowy present turns dark and the future fades to black.

Yet, life goes on. We adjust our vision to what is. We alter our expectations for the future. We adapt to a new normal, because we must.

a wayLife goes on, and with the help of our faith and our friends, we begin again to be grateful for it. Nothing changes for the better…except our perspective.

Our loved ones need us in ways neither we nor they ever imagined, but we’re able to help them.
Conversation becomes more one-sided, but we learn how to reassure and comfort both our loved ones and ourselves with our words.
We sometimes feel overwhelmed with the weight of caregiving, but we learn to ask for help and to accept the help we’re offered.
Smiles from our loved ones are fewer, but those smiles—the ones on their lips and the ones we see in their eyes—bring us more joy.
We mourn that we can’t restore our loved ones to the lives they once lived, but when they can no longer anticipate the new life they are moving toward, we anticipate for them for them, we prepare, and we grow. We, in ourselves…we grow.

joy&gratitudeRelief in the face of difficulty is still relief.

For the help we can give loved ones and the care we can take;
For the words still between us, spoken and unspoken;
For the smiles we can give and the ones we can see and the ones we only feel but believe in nonetheless;
For the growth we experience through helping our loved ones;
For softer hearts and stronger hands, deeper faith and truer hope and love received through giving love;
Lord, make us truly thankful.

“We give You thanks, O Lord God Almighty,
The One who is and who was and who is to come,
Because You have taken Your great power and reigned.”  (Rev. 11:17  NIV)

Father, there may be different kinds of gratitude, but You are the one Source of all blessings. Give us the faith and wisdom to recognize Your good gifts in all their forms and disguises, and remind us always to thank You.

Christmas Every Day

Why can’t every day be like Christmas?

It can be. In fact, for caregivers, it already is.

duskIt’s hard to be a caregiver on any day. But I found it especially difficult during the Christmas season. It had to do with the things that change during the holidays. And the things that don’t.

One huge change: the gaiety is relentless. Wherever you go, everyone seems friendlier. Smiles seem more sincere. And greetings abound, from people you see in line at the grocery store, trudging through a crowded mall, hiking across a parking lot, sitting behind you on the bus.

And music—it’s constant: on the radio, on TV, in every store, even singing out from speakers nestled under the neighbor’s eaves. The newest tunes demand that we forget our pain and rejoice in all the merriest of ways, while the old songs open our hearts to the timeless themes of love and forgiveness.

starsThe scenery is another drastic change. Ribbons, red and green and gold and silver, hang from street signs and light poles. Real or artificial, evergreen is everywhere. Tiny lights shine up from the trunks of trees out to the smallest, highest branches. Lights march in straight lines around rooftops, drip into bright icicles, and fall in dazzling clusters. The lawns that in summer craved water and shade now turn into snowy scenes of Santa’s workshop or lush forests filled with glittering rabbits and deer.

even brighterOr, sweetest of all, maybe Bethlehem rises from the grass, with a stable where Mary and Joseph, shepherds and kings, angels and animals stand or kneel as if frozen, gazing in awe at the Baby sleeping in the manger.

Yet…in many houses, it appears nothing has changed. Just as it did in spring and summer and fall, illness works to darken the rooms. It tries to still the music. It threatens to silence the greetings and dim the smiles.

one starCaregiving becomes even harder, it seems. We do our best to savor the holy holiday, while our loved ones with Alzheimer’s remain largely unaware.

But think about it. Isn’t this the battle we caregivers face daily? We fight to brighten every day. We struggle to hold on to beauty whenever and wherever we can find it—in music, nature, laughter, smiles, companionship. We offer those gifts every day to our loved ones. We try to help them see and hear and feel the joy of being alive. We do our best to keep life from slipping out of their hands.

And we do it with the help of the Babe in the manger. He himself told us his very reason for coming was to bring us life, “abundant life,” and He promised to be with us always.

Which brings us to an amazing conclusion. A sweet and undeniable truth:

For caregivers and their loved ones, every day is indeed Christmas.

With the help of a King who gave Himself so that we might truly live, we give the best of ourselves to bring more life to those we love. Every day. That’s what caregivers do. And that’s Christmas.

christmasI pray your holidays bring you a rebirth of love and strength and joy.

  I have come that they may have life, and that they may have it more abundantly.” (John 10:10  NIV)

Sweet Jesus, thank You for coming to us. Thank you for helping us celebrate Your birth. Please make us humble like You, and strong like You, and loving like You. Be with us as we do our best to serve You by serving each other, every day.