A special thanks to Judith Levy for offering this guest post filled with practical advice when faced with a diagnosis of Alzheimer’s.

The dilemma of writing an educational article on Alzheimer’s Dementia is, where do I begin?  Do I remain objective as I relate my professional background as an Occupational Therapist who could leave problems behind at the end of the day?  Do I start with the issues that I encountered as my parent and I navigated the medical system, the home care agencies, the caregivers with their varied personalities and the costs?  Do I start with my own frustrations as I assumed more and more of the care which lasted for a decade?

The direction that I’ve ended up choosing is as varied and as subjective as each individual affected by or dealing with this disease.  But being the concrete thinker that I am, this is what I decided:  I’ve found that the best place to start is to be objective and put pen to paper.  Here goes . . .

Write down what you see that is off with your loved one.  What’s changed?  Do you think it’s medical?  What are your concerns? What are your questions?  What was it that happened that made you first begin to question the difference?  List everything that you think might be important.  Then make an appointment with your loved one’s physician.  Don’t forget to bring these questions with you and try to get them all answered.

Do some preparation before your appointment.  List all the medications that your parent is taking.  Specify the dosage and what time of day they take them.  Have they been forgetting to take them?  Are they being taken correctly?  Could there an interaction between their medications or with the foods that they are eating?   Has your parent had physical changes that you’ve noticed: lost weight; balance issues; vision changes; inappropriate behavior and/or forgetfulness?  Write down all of this.

When you go to the appointment, try to have another person go with you.  That way if you need to meet privately with the doctor, your parent can be attended to in the waiting room.  Take notes during your visit.  You can refer back to them later.

Once you have a diagnosis, evaluate how you will proceed.  There is a myriad of support groups available to you. Your state’s Alzheimer’s Association is a great place to start.  Check if your church/synagogue has a program in place which will benefit you.  Consider looking for a geriatric care manager who can help you navigate the system.  Don’t forget to ask your physician.  Importantly, ask your friends.  So many families are dealing with this issue that they may have already found out about local services.  Don’t reinvent the wheel.

Something to consider are your parent’s legal forms.  Are they up-to-date?  Do you have the Medical Power of Attorney, Advanced Directive, Will, Medicare/Medicaid numbers, Social Security numbers?  Are they current?  Where are they kept?  If possible, consider taking a picture of them with your phone so you have access to them when you need them.  Don’t forget to photograph a list of important phone numbers, medications, and dosages; keep all this information together.

Once you’ve gotten your framework in place, put it aside.  Things will work out and you will deal with issues as they come up.  Then take a giant step back and breathe.  Live in the moment.  Laugh in the moment.  Enjoy your parent and be thankful for your time together.

Judith A. Levy, EdM, OTR, is the author of “Activities to Do with Your Parent Who Has Alzheimer’s Dementia” (Amazon).  A graduate of Boston University’s Sargent College with a degree in Occupational Therapy, she also received a Master’s Degree in Allied Health Education from Rutgers University.  Mrs. Levy has been a practicing Occupational Therapist specializing in adult rehabilitation for over forty years. For the past ten years, she was the carer for her mother who suffered with Alzheimer’s Dementia.

Please share your comments below in response to either or both of these two questions:

Who is a part of your care team?

What do you want God to do for you?

© 2018 Regifted Grace® Ministry LLC

We help weary caregivers find the courage they need to regain hope and stop feeling alone, fearful and broken.

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I returned home after my freshman year of college to spend the summer with family, friends, and a job. My parents loved weekend camping and told me in advance when they’d be gone. So on a weekend when I knew I’d be “Home Alone,” I decided to throw a formal dinner party. Not just any party, but a formal dinner party for my closest friends.

I sent out invitations and planned the menu. Beef wellington sounded perfect. Well, I hadn’t exactly fixed it before, but it’s easy, right? Just a little meat and puff pastry and throw it in the oven? Au gratin potatoes, French bread, salad, and a decadent dessert rounded out the menu. I even bought each of my guests a corsage or boutonniere.

One of my best friends lived next door; so on the day of the event, I instructed her, “No peeking.” I kept all of the draperies drawn and the doors locked tight. She offered to help, but this was my gift to my special friends.

I pulled out the linens, china, candlesticks, goblets, and silver. Bummer! The silver pieces were tarnished, and I didn’t have time to clean them. Cooking like Julia Child was taking way too much time. So I called my lifetime friend next door, and she agreed to clean the silver—at her house. I had a “no peeking” rule in place.

Venue? The downstairs ping pong table and ten mismatched chairs would be perfect, especially after I removed the ping pong net! I found two large tablecloths that remotely matched, and they almost covered the behemoth table.

I ran upstairs to make sure nothing was burning in the kitchen and raced back downstairs to set the table. The china, silver, goblets, and napkins looked beautiful as I properly arranged them at each setting. A tent card was positioned at each setting. Emily Post would be proud! I nearly dropped the black candlesticks as I stumbled to reach across the Goliath-size table to place them. I checked the clock … only two hours to show time.

Serving pieces? Drat! I needed to find some. I ran upstairs—again—and started looking for the china serving pieces, including the china coffee server and butter dish. I pulled them out, washed them off, and set them aside. The clock was not treating me favorably. I now realized I had only 30 minutes until my guests arrived.

It was a pleasure to serve my friends in a formal dinner. We ate, we laughed, and we hugged. They didn’t all know each other, but it was a special time. After dinner was over, I was exhausted. My mom had no dishwasher, so my friends offered to do clean-up detail. Not only was the special dinner an accomplishment, but doing it all without my mom’s knowledge was a wonderful feeling (i.e. back to that “Home Alone” thing again).

Or so I thought.

My parents returned the next day while I was at work. I got a terse phone call from my mom, and there were expletives used. I didn’t realize that the washed china, cooking pans, and utensils weren’t exactly clean and were put away in the wrong places. I also didn’t know that the china was their expensive wedding china, the linens and silver were fragile family heirlooms, the goblets were crystal, and the candlesticks were delicate black onyx. I also believe I heard the words of, “Don’t you EVER ….” Yep, I thought I’d be grounded for life.

My hope for a milestone gift to my friends, and a learning experience on how to throw a formal dinner party, ended in disappointment and rebuke. Reflecting on the experience now, I contemplate two things.

Preparation. At the time, I believed I adequately prepared for the party. But that paled in comparison to Esther’s preparation before she met King Xerxes. She endured twelve months of beauty treatments with oil of myrrh, perfume, and cosmetics (Esther 2:12 NIV). Her twelve months compared to my seven days? Not even close. My party missed the mark. Do I miss the mark with Jesus? Does God deserve better than merely adequate preparation from me to enter into His presence? Do I practice spiritual disciplines? Acts 2:42 NIV says, “They devoted themselves to teaching, fellowship, the breaking of bread and prayer.” Am I devoted to walk with Jesus? Will God rebuke me if I’m not prepared?

Treasures. I couldn’t recognize that the items I used at the dinner party were precious family heirlooms. I just saw linens, dishes, glasses, flatware, and candlesticks. Can I recognize Jesus? Do I treat Him as ordinary, or as the precious treasure above all treasures? Is His presence richer than the finest china and crystal, more precious than onyx, more shiny than polished silver, and more beautiful than heirloom linens? Jesus is “a chosen and precious cornerstone” (1 Peter 2:6 NIV). Paul wrote, “My goal is that they may know Christ, in whom are hidden all the treasures” (Col. 2:2-3 NIV).

Do I daily invite God to feast with me? Do I see Jesus as the One in whom the treasures of wisdom and knowledge reside? Do I daily prepare the feast table on my knees—memorize scripture, meditate, and desire quality time with the One who always loves and never fails? I want to crave my Jesus—the treasure above all treasures—for all the days of eternity with Him.

I also learned not to fix beef wellington again.

©2018 Regifted Grace Ministry LLC

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Have you ever felt that way? Or felt that you HAVE to forgive and then you feel guilty because you can’t? Or felt guilty because you thought you forgave and then the pain of the offenses crept back in and forgiveness flew out the window?

Raw emotions seep to the surface when a family member becomes responsible for the care of another, especially when that family is impacted by Alzheimer’s. Old family wounds raise up their ugly heads, and fractured relationships become chasms filled with harsh words and unforgiveness.

When my husband and I had to decide whether or not to move to Arkansas to be caregivers for my mom, one of the attorneys I worked with told me how much family dysfunction surfaced when her family received an Alzheimer’s diagnosis. Her family dynamic changed, and the disease pitted one member against another, which was contrary to what I thought would happen. In my world, I thought that a terminal illness such as Alzheimer’s would bring a family together–you know, the strength in numbers thing?

But she was right. The severely fractured relationship I had with my sister for decades got worse and added to the pain of watching my dear Mama journey through the ravaging stages of Alzheimer’s. I had already lost my dad to Alzheimer’s in 2010, and having a second “rodeo” with the same disease was daunting. The separation between my sister and I already seemed bigger than the Great Blue Hole of Belize, and Alzheimer’s grew the chasm “as far as the east is from the west.”

In my published book Undefeated Innocence, which was written during my caregiving experience, I sought to authentically write about the difficult issues that families face with this disease, including forgiveness. While writing the book, I was challenged with my sister’s diagnosis with stage 3 colon cancer. I didn’t know how to handle it and asked God, “How can I forgive when I don’t want to?” I believe I had already penned the chapter on forgiveness prior to the resolution of our relationship and ended up having to rewrite the entire chapter!

Undefeated Innocence is based on a study of The Beatitudes and the fruit of the Spirit. I spend a lot of time on the story of Joseph in Chapter 10 because his story talks about family dysfunction, jealousy, hardship, and the components necessary in order to reach complete forgiveness.

Matthew 5:11-12 (NIV) states, “Blessed are you when people insult you, persecute you and falsely say all kinds of evil against you because of me. Rejoice and be glad, because great is your reward in heaven.” Well, that indeed summed it up for me. Many Alzheimer’s families are ripped apart, and many caregivers feel persecuted. It’s one thing to be at war with an insidious disease, but being at war with your own family is tumultuous.

In a nutshell, here’s what we learn from the story of Joseph which appears in the book of Genesis. He was the second to the youngest son of Jacob; only Benjamin was younger. He was described to be the “favored son” of Jacob which caused much jealousy with Joseph’s older brothers. The brothers plotted to kill him, but instead sold him as a slave after his brother Reuben pleaded to let let him live. Joseph endured further hardship, including prison time for a scheme plotted by a scorned woman. Many years went by. Jacob was distraught by losing his beloved son, and a major drought came upon them. Jacob and his sons heard that they could go to Egypt and try to get food for their family. They didn’t know that, by this time, Joseph had become an official of Egypt, ranked only second to the Pharaoh. When the brothers went to Joseph, they didn’t know it was Joseph. Joseph overheard them talking about their remorse over what they did to him, and he tested them several times before revealing his identity to them. In the end, forgiveness prevailed, and the relationship was restored. And the distraught father was once again reunited with his favored son.

I learned a lot from Joseph’s example. I discovered that the two components for achieving true reconciliation in a relationship are humility and forgiveness. Both are required by the parties in the broken relationship. One party might carry a bigger burden of humility, and another party might carry a bigger burden of forgiveness, but both components are required. In Joseph’s case, the brothers needed to come to Joseph with humility, and Joseph needed to be able to come to the brothers with a forgiving heart. Two parties plus two components equal true forgiveness and reconciliation. I also learned about release (letting yourself off the hook), and I learned that it was okay to test (to see if the other party truly wants reconciliation). I’m convinced that Joseph experienced release in the years between being sold to slaves and becoming second in command in Egypt . After being moved by seeing his brothers again and testing them, humility and forgiveness replaced release, and full reconciliation and restoration of their relationship occurred.

Here are a few excerpts from Chapter 10:

For many years, religion taught me I was required to forgive everyone who hurt me so I wouldn’t be the one being held hostage, regardless of the choice by the other party. Religion was telling me to forgive the other person, even if they never asked for forgiveness nor displayed true repentance. Try as I might, I would say I forgave so-and-so, the chains were broken, and I no longer held myself captive. But did I really feel free? No! I felt shame because I still didn’t feel free, and I still didn’t feel like forgiveness really happened. As a Christian frequently does, I thought I forgave myself or forgave the other person, without their knowledge or assent, and then picked it up again and felt ashamed for not being truly forgiving.

Shame and should are not biblical tenets of a spirit-filled life! I finally got to the point where I admitted that the mere phrase of “I forgive so-and-so but can’t have a relationship with them” made me feel like a failure again. Being told by religion that I was obligated to forgive so-and-so made me feel like a doormat–and a guilt-ridden doormat at that!

My sister battled stage-three colon cancer just months before our reconciliation. I knew my frailties and called out to God with a contrite and transparent request. I told Him I couldn’t do forgiveness on my own with my sister, and I quite frankly didn’t know how to try. I asked Him to change my heart if this was in His will. I asked Him to instill in me a desire for reconciliation and then show me a pathway for success.

Unbeknownst to me, at the same time, God was also speaking to my sister by planting in her heart a desire to reconcile with me. When God is working on both parties in a conflict with the same thing, there is no denying God. Both my sister and I developed a strong desire to reconcile with each other, even though neither of us knew what God was doing in the other.

I now recognized why I frequently got stuck in thinking that God required me to simply forgive everyone, especially if they didn’t ask for it. To me, it felt like they were all receiving a free hall pass while I was stuck in detention! One-sided forgiveness can be steeped in failure. One moment I can feel that I’ve forgiven someone and discover moments later that I’m still angry and unforgiving. It can become a revolving door that feels more like shame than forgiveness.

Not everyone in a relationship is always willing to reconcile with both humility and forgiveness. What God showed me is that in order to avoid being stuck in my own life, I needed to learn how to at least release someone from what they’ve done. It requires me to be the only participant. Release alone is not reconciliation, but it removes the chains from obstructing me from being able to move forward. Release sets me free.

Armed with the desire to allow God’s will to intercede in the relationship with my sister, I knew I could release the emotions of the past. That one was within God’s and my control. I released her and the infractions from my soul so I would no longer be stuck in emotional bondage. If I still felt resentment at times, it didn’t mean I didn’t release. It merely meant that there was still pain, and God could help me with that. Release empowered me to let go and move on with my life, regardless of the actions of anyone else. It was a guiltless first step, and it allowed me to move forward.

Six weeks before Mom passed, my sister came to town to see Mom and with a desire to reconcile with me. God had already helped me release the pain, and I knew that if Lori and I both came to each other with humble spirits seeking forgiveness, I was equipped to offer both release and real forgiveness. Both she and I needed to be humble, and we both needed to be forgiving.

When Lori and her husband drove up to our house, I knew from the moment my sister and I hugged and cried and hugged and cried that all was humbly forgiven between us. We talked about a few details of our relationship over the next few days, but we mostly just agreed that we loved each other and that digging into the past was unnecessary. I was floored by God’s perfect orchestration of a delicate plan. But He had two willing participants filled with release, humility, and forgiveness.

The bottom line is this: Forgiveness is always the goal for God. He loves me so much that He allows me to ask for one step at a time. For me, the first step was to tell Him that I didn’t know if I could do it, but I would be open to Him giving me the desire for a restored relationship. I admitted to God that I couldn’t do it on my own. I gave Him a mustard seed from my soul, and with one small seed, He gave our entire family a story of reconciliation, which has branched off to other family members and gave peace to my mom before she passed.

What I’m not sharing with you are the situations that caused me such deep pain. The details aren’t necessary or productive. But know that they were extraordinarily rugged and deep.

Even more important than Joseph’s story is that Jesus instructed us to forgive one another. The goal is always reconciliation, but it requires two key ingredients–humility and forgiveness. If that’s not possible, perhaps it IS possible to release the pain. Jesus already knows your pain, and your struggles. If you don’t know how you could ever possibly reconcile and forgive someone, consider being frank with God. He already knows anyway. I don’t believe that we are expected to “forgive and forget.” Forgive? Yes. Forget? No. Short of having dementia, we weren’t created with a mind that can forget on purpose. One reason God didn’t create us to forget is that remembering helps us deal with anger. And anger isn’t inherently bad–it tells us that something is wrong and helps us protect ourselves (that’s a whole other blog post I might have to write!). When I took myself for a physical long walk around the block and told God that I was hurt and angry and that He needed to change my heart before I could even entertain the idea of forgiveness, I experienced release. God took it the rest of the way, and forgiveness was not only possible, but it was reality.

The picture at the top of the post was taken days after my dear sister and I reconciled. My mom has some of the Alzheimer’s “blank stare,” but she had great joy in knowing that her daughters finally got things right. And my sister and I? It’s been two years, and we are best of friends.

©2018 Regifted Grace Ministry LLC

We help weary caregivers find the courage they need to regain hope and stop feeling alone, fearful and broken.

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I read their gut-wrenching words. I feel their anguish. My heart races, I clench my fists, and I fight back my tears. I walked in their shoes, yet I sit clueless as to how I should take their agony away. I despise the word should because it’s a word of shame. But that’s how I feel. I feel ashamed that I can’t find words to help them. So goes another morning on an Alzheimer’s social media support group.

One person wants prayer because her loved one wandered away and is lost. Several others announce that their loved ones gained their wings in Heaven. Some wish they had never complained how hard it was to be a caregiver—because now all they wish for was one more smile, one more “I love you,” or one more time to hold a weary hand (I know that one!). And some see absolutely nothing positive in the experience and can’t wait until it’s over because they’re weary from providing 24-hour care, cleaning soiled clothes and linens, and losing their lives too.

So my heart cries.

Social media support groups were a lifeline for me when I struggled to manage my mom’s battle with Alzheimer’s. The hardest part was trying to balance her needs with my own. Balance is so subjective. The disease caused my mom to weave from side to side as she walked down a hallway. The disease caused me to emotional weave from side to side in order to respond to new emergencies and balance them with work, cooking meals, cleaning and sleeping.

I maintain a presence in these online support groups because I have the belief that I can help them all. After all, I already went through caregiving. But on this day, I was without words. I didn’t know how to minister to those who were grieving their losses, or the one who was so afraid of where her parent was, or the ones who can’t find anything good. I hated being reminded of how hard it was for me to be an eyewitness to this wretched disease—twice. And I felt failure, which contradicts my belief that God called me to minister to caregivers.

So God took me for a walk on our mountain ridge. He had my full attention, except for the worship music playing in my ears. It was no coincidence that Voice of Truth by Casting Crowns popped up on my playlist. God always knows when we feel like we tried again and failed. I was hearing the lies—I will be no good at ministry, should never have written a book, and can’t help anybody. God’s response?

He reminded me that He called me for His purpose (Romans 8:28 NIV), but that He didn’t choose me to do everything for everyone. That’s His job. My job is to contribute in accordance with the calling He gives me. In other words, I can help some of the people some of the time, but I can’t help all of the people all of the time. Only God can do that, and I can’t be God. What He’s called me to do is to write Undefeated Innocence and point hurting caregivers to God’s grace—and to encourage them to find the collateral beauty, rather than the collateral damage. If they rebuke God’s grace, I move on. Even Jesus moved on.

This freed me. It led me to understand that God wants my obedience, not my sacrifice. What’s the difference? Obedience is an act of responding to a request to do something. Sacrifice is causing or permitting injury for the sake of something else. God said, “For I desire mercy, not sacrifice, and acknowledgment of God” (Hosea 6:6 NIV). God didn’t just give instructions for burnt sacrifices; rather, He said to “walk in obedience to all I command you” (Jeremiah 7:21-23 NIV). And Jesus came not to “call the righteous, but sinners” (Matthew 9:13).

Caregiving can be horrendous. I know because I did it for both my parents. It’s physically grueling, mentally exhausting and spiritually depleting. At times, the only definition is gross. But I wasn’t asked to sacrifice my life for it—only be obedient.

Sacrifice is Jesus. He was sent to earth alone to die broken, beaten and alone in order for us to receive a place in eternity with our Father, Jesus, and the Holy Spirit. He was beaten, stabbed, mocked, crucified and left to die. He was sacrificed like a beast.

Obedience was Abraham willing to kill his son. Obedience was Daniel willing to spend a night in the lion’s den because he was unwilling to quit praying. Obedience was a young David willing to select a stone to slay a giant. Obedience was my willingness to respond to my mom’s need for help, taking the nursing home and hospital calls in the middle of the night, and answering her frantic calls when she didn’t know where she was or what she was doing there.

Jesus said, “What you did for the least of these, you did for me” (Matthew 25:40 NIV). That’s collateral beauty. That’s obedience. That’s ministry.

So now I understand why I can’t help everyone. God didn’t call me or equip me to help everyone. But I can lead them in the direction of God’s grace. And I understand that what I did for my parents was out of obedience, not out of sacrifice. I was doing it for them, while at the same time doing it for Jesus because He asked me to. If I view my hard times as sacrifice, I see only collateral damage and losses. But in viewing hard times as an act of obedience and love, I see the collateral beauty and gains.

Micah 6:6-8 (NIV) says, “With what shall I come before the Lord? Shall I come before him with burnt offerings? Shall I offer my firstborn for my transgression, the fruit of my body for the sin of my soul? And what does the Lord require of you? To act justly and to love mercy and to walk humbly with your God.”

I continue to spend time with the communities of caregivers in social media. If God leads me to respond, I will. If God leads me to be quiet, I will. I can’t be everything to everyone at every time. It’s not failure—it’s obedience to the one who sacrificed it all and humbly sharing God’s grace and mercy with them through my obedience to Him.

©2018 Regifted Grace Ministry LLC

We help weary caregivers find the courage they need to regain hope and stop feeling alone, fearful and broken.

SIGN UP HERE for weekly 90-second video devotions of encouragement

Buy UNDEFEATED INNOCENCE at Amazon

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About the Reviewer: Steve Krumlauf is a familiar voice in television and radio. He produces commercials, narrations, audio books, and voice tracks through his company, Voices Over Easy Media Services. He is also a frequent book reviewer via Amazon and Goodreads. Steve has served as a principal image voice for The Worship Channel (a 24-hour, Internet-only music and teaching programming service). He’s also a the voice track producer for Understanding the Times Radio, an hour-long interview program syndicated to over 800 radio stations nationally as well as globally on the Internet and Sirius XM satellite. Steve and his wife, Susan, have two grown daughters, one grand son, one grand dog, one grand cat and live in Minnesota.

In the classic Walt Disney cartoon, The Lion King, there’s an iconic tune that celebrates transitions from generation to generation.  The Circle of Life.  Doesn’t that same “circle” exist within a single life?  Think about it.  We all begin life as innocent newborn babies and transition through the various stages of life.  Most of us go from infant to toddler to pre-school to middle-school to high school to college to career to parent.  This is where the great circle of life begins.  As parents, we watch our children go through the same transitions.  But, at some point, a lot of us parents become innocent children again, totally dependent in some way or ways upon our children.  Ironic isn’t it?  As newborn infants and toddlers, we are totally dependent upon our parents.  Much later in life, as parents, we can become totally dependent upon our children.  The circle of life.

That’s where Cheryl Crofoot Knapp’s chronicle of her parents’ transition from independent adult to totally dependent adult begins.  As Knapp’s sub-title indicates, her intimate, bitter-sweet diary, Undefeated Innocence is the story of how God helped her and her parents navigate a journey through Alzheimer’s disease.  As the author notes in her preface, “Alzheimer’s attacks its innocent victims.  But it doesn’t defeat innocence.  Those who have it seemingly return to being a young child and regain simplicity.  Physical life ends like it began and returns to undefeated innocence.”  The circle of life.

Knapp tells us in the fourth chapter, “God called (her) to use (her) spiritual gifts (of) mercy, faith and prophecy . . . through writing, speaking and teaching.”  Two of those three gifts are clearly on display here.  Here Knapp outlines both an internal and external method she developed to diffuse her mother’s anxiety attacks.  Here we learn about the two categories “most people with Alzheimer’s fall into.”  Here Knapp teaches the emotions of exclusion someone with dementia can feel.  Here we learn about the stages of Alzheimer’s.

Within these 200-plus pages, Knapp shares the lessons she learned about overcoming the fear of caregiving.  “Being fearful is not a sign of weakness,” the author says, “It is merely the beginning of courage and bravery.”

On that positive note, Knapp reveals the secrets of “demonstrating authentic love and goodness” to her mother.  Want to know one of the golden rules of caregiving?  You’ll find it here.  Want to know the top ten signs of stress common to dementia caregivers?  You guessed it.  It’s here.  Want to know what fuels external persecution in caregiving?  Yup.  Right again.  It’s all here.

In short, Undefeated Innocence is a well-crafted, adult caregiver owner’s manual, well-lived by a gifted communicator.  Whether it’s dementia or some other life-altering challenge, this should be required reading for all adults who may some day find themselves in Cheryl Knapp’s shoes.