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.what if

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.what's your 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.

choices

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.

 

 

 

 

 

 

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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.

 

Just the Facts, Please

The only way to look at Alzheimer’s Disease is straight on. Unblinking.

Face reality.

Not easy. Especially in the beginning, the disease lures us into false visions. The good days look just fine. “Normal.”  Difficult times? It’s easy to tell ourselves they’re caused by a misunderstanding of some kind, or the aches and pains of getting older.

realityBut the illusions last only so long—would that we could predict exactly how long!—before we can no longer ignore the reality of decline. At that point, we begin to feel as though we’re flying by the seat of our pants. Barely managing to keep the lifeboat afloat. Walking a tightrope in the dark…without a net. We navigate by instinct, bail as fast as we can, and slide ourselves across the chasm with a bravado born of blindness—the darkness hiding not only what lies below but also what looms ahead.

We hunger for information. Information is power; power gives us some level of control; and we long to gain control. But Alzheimer’s doesn’t come with a navigation system or weather forecasting or safety nets. There is no uniform set of symptoms, no universal timeline, no advance notice of sudden changes. Pinning down the facts, just the facts—the who, what, when, where, and why—of Alzheimer’s is a seemingly impossible task.

any questions First we look to science: What signs should we look for? Any treatments on the horizon? Any cures?

But eventually—and always too quickly—we’re just searching for ways to get through each day. We want to know more about how to help our loved ones feel safe, stay connected, and live at their best—today. Here, definitive answers are even harder to come by, because the challenges of living with Alzheimer’s are unique to each personas unique as his or her personality and experiences.

factIs there no answer then to the question of when to take away the car keys? No answer to what does sundowning look like or how to handle wandering? Well, if we look at Alzheimer’s and caregiving factually, no, there is no one answer to those questions.

Realistically speaking, though,  we know there ARE answers. There are helps. Some we’ve seen. Some we’ve read about. THE answer for everyone? No. But options, YES! Looking realistically means letting go of the idea that there’s only one right answer to each question. Looking realistically means we can look at the WHOs instead of the WHO; the WHATs instead of the WHAT; the WHENs and WHEREs and WHYs instead of expecting a single, uniquely correct, factual response to our questions.

And looking realistically means that even though none of us has all the facts, we can share the information we do have.Hands raisedOur next five posts on this blog will do just that. We’ll explore each of those five issues: the WHOs, WHATs, WHENs, WHEREs, and WHYs of Alzheimer’s. We’ll be looking at each of the topics subjectively, dealing not with statistics but with common experiences. So we can learn and share.

optionsMany questions and many answers make for many options.

Caring for a loved one with Alzheimer’s is a generous and loving but demanding and strenuous challenge. That’s a fact. But it’s also a fact that we need not face that challenge alone.

“Ask, and it will be given to you; seek, and you will find; knock, and it will be opened to you.” Matthew 7:7 (NKJV)

Lord, You are the source of our hope and our help. Please remind us that we belong to an army of caregivers, each of us fighting the same battle, all of us searching for the same answers. Help us help others as You help us all.

Are We Fighting FOR or AGAINST?

In the battle we wage for our loved ones with Alzheimer’s, we are not powerless.

No,  we can’t protect them from the disease.   We can’t slow it down.    We can’t stop it. If our battle is against Alzheimer’s, we cannot win.

But what if, instead of fighting against Alzheimer’s, we fight for our loved ones?     That’s a completely different war. We can win that war.

“Fighting for our loved ones.” What does that mean?  It means helping them live as long as possible.   So what does that look like?

TX winecupsbluebonnets prairie paintbrush

Dad wants to take Mom on an overnight trip, a drive down to the hill country to see the wildflowers. Bluebonnets, winecups, prairie paintbrushes! But I know spending a night in a hotel room would frighten and confuse Mom to the point of disaster. So I suggest a short drive to some nearby bluebonnet fields. We take sandwiches and eat in the car. It’s good: Mom is relaxed, looking out the car window, chewing her egg salbloomiing tomatoad with serene deliberation. In Dad’s opinion, though, the flowers are a bit sparse. So after we eat, I turn the car toward home. Once there, we take cold drinks out to the back yard and sit in the shade, where we admire Dad’s petunias and periwinkles and coneflowers and the little yellow blossoms on his tomato plants. Victory!

Christmas decorations and brightly wrapped packages cause Mom to ask endless questions. Her shuffling feet show us these sudden additions to the décor are making her nervous. So we back the tree into a corner and put the gifts in the closet for a while. But later we find a funny little motorized tree that we bring to the kitchen table. Only a few inches tall, it revolves, playing carols and shining with tiny multicolored lights. Mom’s not sure about it ’til Dad talks techno treeto her, very softly, telling her—the story of the first Christmas tree? No. He’s telling her about the technology that makes the lights glow and fade and glow and fade. And gradually she relaxes. She even smiles. Victory!

Mom has finally had to go to a nursing facility. She’s bedridden with a broken hip, unable—mentally or physically—to do enough rehab to keep the new hip joint in place. Mom’s not talking much, but I’m grateful she seems unfazed by the move from the hospital to yet another unfamiliar place. Dad, on the other hand, is heartbroken. His greatest wish remains unchanged and unfulfilled: he wants her with him. He expected to bring her home from the hospital; instead, she is in another “home.” He will never be happy, he thinks, without her. fRANK SINATRABut the next day, my sister arrives with a small lamp and a comfy chair and a radio, which she promptly tunes to the “oldies” station. And less than a week after the sadness of moving day, Frank Sinatra is serenading Mom while Dad drinks the coffee the lunch room ladies give him every day. Not home, but comfortable. And together. Victory!

Our weapons in the battle for the lives of our loved ones are not complicated to operate, but it does take some practice to learn to use them in this particular war.

Patience—to withstand the onslaught of questions and complaints. patiencePlanning—to ease transitions and nip difficulties in the bud. planCreativity—to find new substitutes for old habits and favorite activities. creativityGratitude—to encourage us to accept the help others offer. Determination—to keep us gratitudesteady in the face of constant change. optimismOptimism—to persuade us that, no matter what new pain Alzheimer’s inflicts, we will find a way to keep our loved ones OK.

And most effective of all, love—to convince us to fight, not simply for our loved ones’ survival, but for their lives.loveLord, we can accomplish nothing without You, but with You, we can do everything You call us to do. Thank You for helping us bring Your abundant Life to our loved ones.

“Take my yoke upon you and learn from me, for I am gentle and humble in heart, and you will find rest for your souls. For my yoke is easy and my burden is light.”      (Matthew 11:29-30  NIV)

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.

‘Tis the Season

Holidays—Christmas, in particular—are the source of many of our sweetest memories. But in a house where Alzheimer’s lives, can Christmas bring any more happy memories?

Absolutely.Yes, our celebrations will change, in small ways or large, because of Alzheimer’s. But the love of family and friends will not change. And love is the most important ingredient in our sweetest memories.

goodiesAs we look forward to holiday gatherings, it’s important for caregivers to know where our focus should be: Our goal is to make those we care for comfortable.

Of course, it would be nice to see our loved ones looking and acting happy. Nice, but not necessary. Comfort is necessary. Comfort is what will keep our loved ones with us, participating as best they can in the pleasures unique to Christmas-time.

Here are a few suggestions for making an Alzheimer’s patient comfortable at holiday gatherings:

Plan small gatherings. A crowded room with lots of people talking at once can make someone with Alzheimer’s very anxious. So consider entertaining just a few family members and close friends. There’s a chance your loved one will surprise you by remembering some of your guests—by face or voice, if not by name. But it’s virtually certain he will be unsettled, maybe extremely so, if he’s in a crowd.

b&w gatheringIf possible, hold the party at the place where your loved one lives. Those are the surroundings most familiar to him, so he should be more comfortable there than anywhere else. In addition, if he would rather not participate or if he gets tired, he’ll be able to retreat to another room, close by, where you can watch and care for him without leaving the party. If it’s not possible to have the party where your loved one lives, be sure you have a plan in place in case he insists on leaving.

Be prepared to stay close by your loved one and bring an extra store of patience. There will probably be lots of questions—about the decorations, the food, the music, the people, everything.

b&w decoratingTry not to talk around your loved one with Alzheimer’s. Include him in conversations in any way possible. Even if he can’t or won’t speak, you can acknowledge him with direct eye contact, perhaps a smile or a nod. And if he does decide to get in on the discussion, let him. If his words might make no sense, it doesn’t matter. He’s participating! What if you think he’s talking too long? Just handle it the same way you handle his conversations with the pharmacist or the cashier or the neighbor who comes for a visit.

Make sure there’s something at the party your loved one likes to eat. REALLY likes. Obviously, having him eat something nutritious before the party would be best; still, he may want to eat again if he sees others snacking. Of course you should also be prepared for him to reject whatever you offer. Remember: the focus is on comfort.b&w dinnerConsider bringing out old photos. Even if your loved one looks at some of them every day, chances are they will provide an opportunity for him to interact with your guests.

Music sometimes helps those with Alzheimer’s to relax, especially their musical favorites from the past. Christmas carols may bring a smile to your loved one’s face; he might even hum or sing along. Just remember to keep it soft. Loud music won’t help. Even Christmas music isn’t good if it’s too loud.

christmas carolsWhat about gifts? If there’s something you know your loved one enjoys (family pictures, coins to count, puzzles, towels to fold, etc.) go for it! The gift needn’t be new; the idea is simply to have something for him to unwrap. But—another reminder of how few things are predictable in a life lived with Alzheimer’s—don’t be offended if he doesn’t like or even unwrap anything you give, no matter how “perfect” you think it is.

Relax. You have invited family and close friends. These are people you know well, people who understand the challenges you face every day. Trust your guests to understand.b&w friendsLook for miracles. They happen every day in the life of an Alzheimer’s patient, so watch for them—expect them—here also. Small things, like a smile, or bigger ones, like wanting to dance or sing, wanting to talk to people, enjoying a gift. And even if your loved one’s reactions are not all that you hope for, you will have kept him present in an important family gathering, present in his life.

Finally, remember to do all you can to enjoy your Christmas season, also. You need some free time. Get help—day care or home care from a volunteer or professional. Perhaps you’ll go out for coffee with a friend. Or bake. Or walk through the mall to enjoy the decorations. Or maybe you’ll take the opportunity to sit quietly and ponder the blessings that flowed from the manger of that cold stable, a manger filled with scratchy straw on which lay a King.Babe in mangerDear caregivers, you will pour out your lives with love on Christmas Day, as you do every day, for those you care for. Love makes memories, so do not doubt: you will make more good memories this Christmas. Lovely and sweet and lasting, they will comfort you in Christmases to come.

Sweet Lord, You came to be with us so that one day we might be with You. Help us, please, to see Your grace and truth. Help us to show Your love to those we care for in this season that celebrates Your birth.

And the Word became flesh and dwelt among us, and we beheld His glory, the glory as of the only begotten of the Father, full of grace and truth.  (John 1:14 NKJV)

Making Assumptions

Making assumptions can be a good strategy for caregivers. Why? Because making an assumption will lead us to try something, take some kind of action that just might improve life for the ones we care for.

So many times in a day I was baffled by my mother’s actions. Or her words. Or the expression on her face. I could try to guess what she needed or wanted and come up with a lot of possibilities. But then I spent time trying to decide which possibility was the correct one. And as the clock ticked on, Mom either got upset because I wasn’t helping her, or she said—by word or action—“Never mind. Just forget it.”

meme-thinking-face-1920x1080My guessing game left us both unhappy.

But what if I had assumed? “Assume” carries the idea, not simply of guessing, but of acting on a guess. And where our loved ones who have Alzheimer’s are concerned, trying to do something for them is almost always better than standing around worrying about what they want.

good ideaA simple example:
Dad, Mom, and I walk into a large discount store. She’s pushing a shopping cart and I’m right beside her. Dad goes ahead of us with his own cart.

Usually Mom and I sit for a while in the coffee shop while Dad roams the store. So I gently steer the cart toward our regular table. Mom gives me an angry look. Asking her what’s wrong gets me no response. So I try again to turn the cart. This time Mom hisses, “No!” Before her temper is fully engaged, I stop to investigate. Her shoe isn’t untied. She’s not trying to sit down. Her hands aren’t in her pocket searching for a tissue. She’s just staring straight ahead. So I look that direction—and see a large display of poinsettias. They’ve arrived just in time for Thanksgiving.

And I assume that’s what Mom wants to see. Rather than ask her, I simply steer the cart in the direction of the flowers.time for action

The closer we get, the bigger Mom’s smile grows. We walk around and around the large display, circling the blooms of red and pink and green and cream, some glitter-sprinkled, and all stretching their graceful necks above gold and silver foil collars.

After Mom’s admired and sniffed and pointed for a few minutes, I see her shoulders start to droop and assume she’s getting tired. So I start talking about our favorite table and the hot coffee we can enjoy there. And soon we’re there, sipping our coffee, Mom pointing toward the flowers again, me talking about each color, the three sizes of pots, and gold and silver ribbons.

I could have asked, of course. “Mama, do you want to see the flowers?” In the absence of a reply, I’d likely have gone on, “Or do you want to look at the popcorn tins? Or walk down the produce aisle? Or go find Daddy? Or….”

pls stand byBut on that day as on most days, Mom either couldn’t or wouldn’t have answered. The frown on her face would grow deeper with each question. So, knowing that almost any pleasant action is better than another question, I made an assumption and started moving. If I had found my assumption was false, I could have made a different one and moved in a different direction.

There are, of course, two other possibilities to consider:

Maybe Mom didn’t know what she wanted; maybe her reactions had more to do with a difficult mood than a specific desire. In that case, steering with my shoulder and my body, I’d have led her over to sit down or outside to wait in the car.

Or perhaps I had no idea what Mom wanted to do. What then? Well, I could still try all the likeliest possibilities, and sooner or later the activity would tire her and we’d just sit and wait for Dad.

The thing to remember is that making an assumption leads to some kind of action. For the caregiver, doing something feels better than standing around wondering. And for those with Alzheimer’s, our actions, even trial-and-error actions, are easier than questions. Even if what we end up doing isn’t what our loved ones had in mind, all our attention is focused on them. We’re touching them, talking to them, smiling at them. In Mom’s case, all of those gentle realities were less threatening to her than a question she couldn’t answer.

forwardFor me, doing something was progress. Finding out Mom would eat cranberries when nothing else pleased her, seeing that sometimes she wanted me to help with the left shoe first instead of the right—making discoveries like those helped me to see that I wasn’t just watching and waiting with her. I was helping her live a life, her life, in spite of Alzheimer’s.

He will feed His flock like a shepherd; He will gather the lambs with His arm, And carry them in His bosom…. Isaiah 40:11 (NKJV)

Lord, we ask you to guide our actions with our loved ones. Show us the possibilities, the opportunities we have to help them continue to live here on earth until You show them the infinite beauty of life with You.
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