Help and Encouragement for Spousal Caregivers

sanctuary-in-the-midst

Today’s guest post is by Elizabeth Shulman. She shares her personal story about caring for a spouse with mental illness. While caring for him, she met others caring for loved ones with Alzheimer’s and learned that many of the challenges are similar. She eventually wrote a Bible study addressing those challenges.

Please click on the book image (left) to learn more about Elizabeth’s Bible study. “Sanctuary in the Midst of Alzheimer’s” is the only Bible study specifically designed to help churches provide support to now the largest group of dementia caregivers – spouses. Experiencing scripture through the lens of personal stories, participants get to ‘walk in the shoes’ of husbands and wives caring for a spouse with dementia. The result is a greater understanding of the caregiver’s role and a deeper empathy upon which an effective ministry can be built. You may visit Elizabeth’s website here.

And now, Elizabeth’s story . . .

I was married for 20 years to a brilliant, kind and loving man who was diagnosed with paranoid schizophrenia 12 years into our marriage. The depression related to trying to manage my husband’s behavior and adherence to his medication regime, along with raising four children under the age of 8 was overwhelming. I had sought help from support groups such as those sponsored by NAMI (National Alliance on Mental Illness); however, I did not meet other spouses in these groups, only siblings and parents of persons diagnosed with schizophrenia, and their issues and concerns were not the same as mine. My concerns centered on the commitment of marriage, questioning God’s presence in the midst of my turmoil and finding meaning in a relationship where my husband’s ability to function as a spouse, father and professor was dependent upon medication that he would repeatedly discontinue taking because in his mind, “he was fine and did not need it.”

A few years after his diagnosis, I realized we could not depend on his employment at the university as a guarantee for income, and I went back to work as a healthcare chaplain. I eventually became the pastoral care director for a 600-bed skilled nursing facility, and that is where I found my purpose in life that has directed my work the past 14 years.

What inspired me during this time was observing the husbands and wives who came to the nursing home where I worked to visit their spouses in the Alzheimer’s unit. Just to differentiate: Alzheimer’s and many other forms of dementia are a brain disease, whereas, schizophrenia is a mental illness; however, many of the symptoms such as disoriented thinking and speaking, paranoia, personality changes and forgetfulness manifest similarly, and so caregivers of both types of patients may experience comparable circumstances – which is why I identified so strongly with these dementia caregivers!

I will never forget Frank, a husband who visited his wife in the Alzheimer’s unit every day. One day he walked in and found his wife sitting on the couch holding hands with another man, and as Frank walked over to her and introduced himself (she had long since forgotten who he was), she smiled and introduced Frank to “her husband.” I could tell Frank was taken aback from this, but he quickly recovered and when I asked him about this encounter later, he said, “this disease may be robbing my wife of how she is, but it can never take away who she is: my wife and God’s child.”

Frank was just one of many spouses that I met while working in the nursing home. After some time, I began working in hospice and also encountered caregivers whose loved ones still lived at home. Their struggles were often compounded by the physical challenges of caregiving. I discovered that spouses’ approach to caregiving was as diverse as the caregiver. However, most struggled with coming to terms with how they viewed their commitment to marriage and all expressed profound feelings of isolation.

It was during this time that I decided to go back to school for my doctorate. My dissertation was on the experience of marriage for Alzheimer’s patients during which time I reviewed literature and interviewed spousal caregivers. As with the spouses I met in hospice, the theme of isolation came up in every interview, and – probably because I lived in the Bible belt of Tennessee – feeling isolated from their church in particular was a significant issue. In talking with pastors about this, it became obvious that church members wanted to help, but they didn’t know how. So, I used the findings from my research and wrote Sanctuary in the Midst of Alzheimer’s: A Ministry for Husband and Wives Caring for a Spouse with Dementia.

This book can be used many different ways. It is a written in the format of a Bible study using personal stories to guide discussion.  Anyone can lead it because the directions are embedded within the lessons. It is made up of two parts, one section for spouses and the other section for those who want to “walk in the shoes” of spousal caregivers to better understand their needs and discover ways they can provide support. In a church setting, a congregation ideally conducts this weekly program with both groups running simultaneously for 4 weeks, and then in the 5th week both groups come together to create a dementia ministry for their church using information gathered during the previous four weeks.

However, I have found that the parts of the book can be separated and used as either discussion guides for dementia support groups or educational programs for assisted living facilities or other communities that want to provide education as a form of outreach with a spiritual component. Additionally, spouses can go through the spousal section on their own, using it as a personal workbook to help them process their feelings and hopefully, find inspiration.

Jesus’ words, “You shall know the truth, and the truth shall set you free” (John 8:32) has been my foundation as I work with spouses to find meaning in their marriage and to help them make sense of a situation that often makes little sense. I have found that when spousal caregivers are honest about their feelings and their goals for caregiving, it allows them to express their love in the most honest way possible. (For example, when making decisions that they know is best for them and their spouse even if their children or friends disagree.) My hope is that Sanctuary in the Midst of Alzheimer’s will help guide spouses through the difficult terrain of dementia caregiving while also educating others on how they can best support these caregivers. When we are able to love openly, honestly and completely, we truly do experience the freedom that Jesus promises.

Advertisements

Taste and See

My favorite Persian dish is Khoresh-e-Fesenjoon, a chicken stew with walnut and pomegranate sauce. With the proper ingredients and right preparation, it tastes out of this world. The flavor is like no other. It’s tangy and sweet at the same time. I believe one of the dishes served at God’s Banquet Table will be Khoresh-e-Fesenjoon served over Saffron rice.

Shah-5-23-19_2
Photo by Artur Rutkowski on Unsplash

The recipe consists of two super foods, walnuts and pomegranates. In a rich sauce, the walnut adds a wonderful nutty taste to make all the flavors come together. However, all the credit goes to the pomegranates’ thick syrup or as we call it in Farsi, Rob-e-Anar, which gives the stew its amazing tangy sweet flavor. Having several Pomegranate trees, we make our own syrup. It takes several hours, and it takes a gallon of Pomegranate juice to make about 18 ounces of syrup. But it’s worth every minute of the labor.

This is how the stew is prepared.

The following is taken from Persianmama.com

INGREDIENTS

1½ large yellow onion sliced thin and fried golden brown in 3-4 TBSP vegetable oil 2 pounds skinless chicken drumsticks or thighs (4-5 pieces)

8 ounces walnut halves (about 2 cups)

¼ cup cold water

1 cup pomegranate concentrate

¼ tsp kosher salt

⅛ tsp freshly cracked black pepper

Pomegranate seeds for garnish

INSTRUCTIONS

1. Pick through the walnuts for any shells and add to a food processor and process until it turns to a tan-colored paste.

2. With the food processor running add ¼ cup cold water through the feed chute. Continue processing until the paste becomes uniformly beige in color.

3. Fry the sliced onions with 3-4 TBSP vegetable oil in a 6-Qt stockpot until golden brown. Remove from the pot.

4. Add chicken to the same stockpot and top it with the walnut paste evenly over the fried onions. Sprinkle with salt and pepper.

5. Drizzle the pomegranate concentrate over all the ingredients.

6. Bring to a boil over medium heat. The pomegranate concentrate tends to stick and burn fairly quickly so avoid high heat.

7. Reduce the heat to medium low, cover the pot and simmer for 15 minutes.

8. Now reduce the heat to low and simmer covered for an additional 1 hour 15 minutes, or until the sauce is thickened and the chicken is fork tender and falls off the bone.

9. Stir every 15 minutes or so to make sure the sauce does not stick to the pot. If at the end of this time period the sauce has not thickened enough, leave the pot uncovered for about 10 minutes on low heat for a thicker sauce.

Transfer the Fesenjoon to a serving dish and sprinkle some pomegranate seeds on top as garnish.

Serve over Saffron rice.

And this is a photo of the final product.

Shah-5-23-19_1

Can you feel your nostrils tingling and your mouth salivating? Are you licking your lips wondering what kind of amazing dance Fesenjoon might do on your taste buds? Why are you wondering about that? Everything you need to know about Koresh-e-Fesenjoon is in writing in front of you. You know its ingredients, you know how to make it, you know how to serve it, and you even have a photo of it.

But all that means nothing when it comes to actually knowing what the dish is all about. So, what’s missing here? You have not eaten the food. You have not experienced its TASTE.

The Bible is clear that reading about God, studying theology, or even becoming a Bible scholar is not enough when it comes to knowing God. That is just like studying Fesenjoon to death, knowing its ingredients, knowing the nutritional benefit of every ingredient, the calories per serving, how to prepare and serve it, or even get a PhD in Khoresh-e-Fesenjoon (I believe there are some schools that hand out PhD in Khoresh), but never know the depth and the richness of the dish because you never tasted it. That is why the Psalmist says,

“TASTE and see that God is good.” Ps. 34:8

In order to know the Creator, one has to experience or taste him and if you don’t agree with me, the next time you come to my house for dinner, your meal will consist of a picture of Fesenjoon with its ingredients and how to prepare it written underneath the photo.


Many thanks to guest blogger Shah Afshar for today’s post. Please visit his website.

ABOUT SHAH

Shah-5-23-19_3
Shah Afshar

Shahkrokh “Shah” Afshar is an original. He founded and pastored the first Iranian Christian organization in the United States. Shah has been instrumental in reaching the Muslim world with the gospel. His work as a professor and as a Muslim world mission coordinator for Foursquare Missions International expanded his influence worldwide. As a former Muslim and seminary-trained leader, Shah shares unique insights with humor and wit. His passion is to communicate the relevance of Christ’s message to a skeptical generation. Shah is available to speak at conventions, churches, schools and for TV/radio interviews.

God Loves You! How God Commissioned Me

It was a hot, sunny day in Johannesburg, South Africa in 1987. I was standing behind thevan-rensberg sliding door in our lounge, watching the birds enjoying themselves in the birdbath that I have installed that afternoon, together with a bird feeder, filled with food, nearby. They were flying backwards and forwards, feeding and then going to the birdbath to enjoy themselves in the cool water. Lots of noise as they coo-ed and chirped, and the water was splashing everywhere.

Behind them I can see the amazing view of verdant valley where a river flows through the Glenvista golf course. The people who designed the course created a few dams and waterfalls in the flow of the stream as it meandered through the valley. “How blessed we are to be able to live in such a beautiful place, “ I thought to myself. Lainie and I bought the stand years before and then took quite a while to develop it and build the house we wanted, with a view that went on forever. “God has been so good to us, “ I thought.

A sudden flapping of wings and wild squawking from the birdbath brought my thoughts back to the pigeons, sparrows and finches in the hot sun. I smiled and was very pleased that I had installed the bath and feeder for them and had an irresistible urge to move the lace curtain and go out there to tell them how much I love them and how I was enjoying seeing them enjoying the cool water. Wouldn’t it be wonderful if they would fly to me and land on my shoulders or hands to thank me for what I have done? Yet, I knew that if should even move the curtain a little bit so that they would see me, they would take off and fly away in fear of their lives. And how silly is that? Did I not buy the birdbath and feeder and install it for them? It is my money that pays for the water and purchased the birdseed! And yet, they would flee from me in fear?

As I was thinking this, the voice of the Lord came to me: “Meyer, now you have an idea how I feel,” He said. “I created the earth and everything in it and I provide in all man’s needs and yet, they are constantly fleeing from Me in fear of their lives! I want them to come to Me and thank Me for what I have done for them. I love them and want them to enjoy the gifts I have given them! Now, I want you to go out into the world with this message: Tell them how much I love them. I love them with a Father’s agape love and they don’t need to be afraid of Me!”

God had previously confirmed my calling as a teacher of His Word, but since that day, I have been endeavouring to fulfill that commission. In the Old Testament, the people were so afraid of God that they told Moses: “You speak with us, and we will hear; but let not God speak with us, lest we die.” And Moses said to the people, “Do not fear…” (Ex.20:19,20). Amazing: God delivered them out of Egypt and brought them safely through the Red Sea: He provided a cloud by day and a fire by night to keep them from harm, He gave them food in the desert and yet they were afraid of him!

Today, my friend, we are the same: people run away from God instead of to Him. He loves us so much He came and died on the Cross for as so that we can be saved and come into His presence boldly!

Like I did with the birds, it is God’s desire for us to come to Him and not run away from Him: to accept Him as our Father who loves us and cares for us. My message to you today is: “God loves you so much more than you can ever think or imagine, therefore run to Him, not away from Him!”

“Let us therefore come boldly to the throne of grace, that we may obtain mercy and find grace to help in time of need.” (Heb.4:16)


van-rensberg-2

Many thanks to Dr. Meyer van Rensburg for this guest post. Please visit his website!

 

 

About the author:

Dr. Meyer van Rensburg was born again in 1982 and has been studying God’s Word ever since. He attended Bible School in 1985/6 and then continued his studies to obtain various degrees: Bachelor of Theology and Master of  Christian Counselling and Master of Divinity from an American Institution as well as Master of Theology from Wales, Bangor and Doctor of Ministry. God has called him as a teacher of the Word and told him to “go and tell them how much I love them.”

In 1987 he was ordained as a minister of God by the International Federation of Christian Churches. After establishing various Bible schools in South Africa, he accepted the post of Senior Lecturer with a Bible Training Centre in Bristol, England, in 2004. After two years he accepted the position of Senior Lecturer and Dean of Students from a London university college. He travels to teach all over the world, especially in the UK, South Africa and Poland. He holds various degrees: Bachelor of Theology and Master of Christian Counselling and Master of Divinity from an American Institution as well as Master of Theology from Wales, Bangor and Doctor of Ministry.

In South Africa he was well-known with Radio Pulpit listeners for programmes such as “Running the Race” on Friday mornings where he used to interview Christian sportsmen, as well as “Music & the Word,”  “Mosaic,” “Light before Midnight,” and others.  He writes extensively, regularly contributing articles for Lucerna and other magazines, as well as being the author of seven books: “Brother to Brother: A Handbook for the Study of Covenants,” “A Dwelling Place for God, A Handbook for the Study of the Tabernacle in the Wilderness,” “God & sons: A Study in  the Fatherhood of God” and “Images of Christ in Genesis, Vols. I, II, and II, and “The Cure for Today’s Dying Church: The Wellspring of Life.” The books are available from the Amazon or one can order it directly from the author. drmeyervr@yahoo.co.uk

Dr. Meyer is married to Lorraine and is the proud father of five daughters. He also paints in oils, does sound engineering, writes poetry, and loves doing woodwork and gardening. His favourite Scripture is Galatians 2:20:  I have been crucified with Christ, nevertheless I live; yet, not I, but Christ lives in me: and the life that I now live in the flesh, I live by faith in the Son of God, who loved me, and gave Himself for me.

Website: https://www.meyervanrensburg.com/

 

Keeping an Eternal Perspective in a Temporal World

This post courtesy of JesusOnLine. I encourage you to visit their site to read other posts and learn more about their ministry.


One of the greatest challenges for Christians is maintaining an eternal perspective.

Life goes by so quickly. And yet we often get caught up in the day to day tasks and forget that we are not promised tomorrow.

James 4:14 refers to the human life as a vapor: it appears for a while and then vanishes.

Perhaps if we remembered this truth we would have an easier time also remembering our purpose on earth.

Life isn’t about accumulating money, power, or fame. Life’s about fulfilling God’s purpose for us. We must focus, therefore, on His eternal perspective.

Colossians 3:2 tell us, “Set your mind on things above, not on earthly things.”

Although we live in time now, God created us for eternity. As Ecclesiastes 3:11 says, “[God] has also put eternity in their hearts.” We may live in time, but eternity must be the backdrop of our life. We must learn to live for eternal purposes.

So what is this eternal perspective? What is God’s way? His thoughts that are higher than ours?

An eternal perspective affects our priorities and actions. Here are some of the ways believing and relying on God’s eternal truths will affect your life:

– You will realize that suffering on earth is momentary. 2 Corinthians 4:17 tells us that our afflictions here on earth are “light and momentary” and are “achieving for us an eternal glory” that will far outweigh anything else. In other words, the things we experience here on earth are shaping us and preparing us for eternal life.

– You will find it easier to love others. Every soul is eternal, and each is in desperate need of knowing God and his mercy. When this is at the forefront of our mind it helps us extend love and mercy to those around us. The way we relate to others is inevitably influenced when we believe that eternal closeness or separation from God hangs in the balance.

– You will not be fearful. People are afraid of many things, and especially of death. But 1 John 4:18 tells us that there is no fear in love and that perfect love drives out fear. We have perfect love from our Savior. It was through his perfect act of love on the cross that sin, suffering, and death was defeated (1 Cor. 15:55-57). He has made available to us eternal life. This means we no longer have to be fearful of anything, not even death. God wants us to embrace and embody the love he has extended to us.

In what ways can you reflect on God’s eternal truths today? How will it change how you think and act? Remember, though heaven and earth pass away, God’s truth will never disappear (Matt. 24:35).

Are You Hopeful or Hopeless?

Are You Hopeful or Hopeless?

Guest blogger: Mark Goodman

In a song from Les Miserables, Fantine mourns her shattered dream.  Weeping, she sings:

But the tigers come at night
With their voices soft as thunder
As they tear your hope apart
As they turn your dream to shame

And later:

Now life has killed the dream I dreamed.

Everyone reading this has lost a dream to the strangling grasp of life.  What dream did you bury?  What dream do you continue to exhume?

On a now-famous day in August of 1963, a man well-familiar with personal pain and shattered dreams stood before a crowd of thousands on the steps of the Lincoln Memorial and declared his dream.  Later he still held to that dream as he evidenced in the words from 1967 that we now hear:

If you lose hope, somehow you lose the vitality that keeps life moving, you lose that courage to be, that quality that helps you go on in spite of it all.  And so today I still have a dream.

This week marks the beginning of the Advent season, a time of expectant waiting.  We imagine what it was like for the Hebrew people awaiting the Messiah’s arrival and we experience our own wait for the Lord’s return.  Today we focus on the Hope of Advent. 

As Dr. Martin Luther King, Jr. so beautifully stated, hope is indeed “that courage to be.”

I want to point you in the right direction in which you can choose to travel and to the journey along which you will discover the sources of Hope from which come strength as you tap into them.

Like the Oz-bound brainless Scarecrow pointing in all directions, shared opinions, spoken philosophies, and a plethora of spiritual teachers will steer you toward a hope found in self-actualization and/or the true fulfillment of your inner being.  For the follower of Christ, however, the only true guidance comes from Christ, the Author and Perfecter of our faith (Hebrews 12:2).  This Christ spoke all things into being, including the Word of God as found in the New and Old Testaments.  Let us, then, turn to the Old Testament to find the map for our journey toward Hope.

1 Hear my prayer, LORD;
let my cry for help come to you.
2 Do not hide your face from me
when I am in distress.
Turn your ear to me;
when I call, answer me quickly.
3 For my days vanish like smoke;
my bones burn like glowing embers.
4 My heart is blighted and withered like grass;
I forget to eat my food.
5 In my distress I groan aloud
and am reduced to skin and bones.
6 I am like a desert owl,
like an owl among the ruins.
7 I lie awake; I have become
like a bird alone on a roof.

Psalm 102:1-7
 (1984 NIV)

Withered heart, vanishing days, no appetite for food – the situation appears hopeless.  Yet (oh yes, yet), the afflicted man dares raise his eyes to take in the wider view of life.  There his eyes or, perhaps more so, his spirit found a profoundly delightful focus.  God came near.

25 In the beginning you laid the foundations of the earth,
and the heavens are the work of your hands.
26 They will perish, but you remain;
they will all wear out like a garment.
Like clothing you will change them
and they will be discarded.
27 But you remain the same,
and your years will never end.
28 The children of your servants will live in your presence;
their descendants will be established before you.”

Psalm 102:25-28
 (1984 NIV)

J.R.R. Tolkien, author of The Lord of the Rings, wrote:
“Hope is hope for infinite Hope.”

Notice the capitalization of the last “H” in the sentence.

To push “shift” as one types that last word’s first letter, is to recognize that hope, in order to last, must claim God as its source, motivation and destination.

In 1626, from the pulpit of the immense and magnificent St. Paul’s Cathedral in London, the English poet and pastor John Donne proclaimed the following words about death on Christmas Day, of all times.  I am glad he did.

Others die as martyrs, but Christ was born a martyr.  He found Golgotha (where he was crucified) even in Bethlehem where he was born.  For to his tenderness then, even the straws were almost as sharp as the thorns after, and the manger as uneasy at first as his cross at last.  His birth and his death were but one continual act, and his Christmas Day and his Good Friday are but the evening and the morning of one and the same day.  (Hendrix 53)

While I am quite sure that Jesus the newborn child did not formulate thoughts of the cross while still in the manger, I do know that when the soldiers led Him up to Golgotha, it was no surprise to Him.

Ultimately and immediately, you will discover Hope if you will look forward to the Lord’s return and will look backward to see His willingness to die.

Works Cited
Hendrix, John. Celebrate Advent Worship and Learning Resources. Macon, GA: Smyth & Helwys, 1999.

_______________________________________________

Many thanks to guest blogger Mark Goodman. You may visit his blog here. He shared this about himself and his family:

 

I have served in Christian Ministry for over 25 years in Texas and Alaska. Since 2008, I have been living in Anchorage, Alaska and serving as the Senior Pastor of Rabbit Creek Church. As a pastor and teacher, my passion is guiding people and helping them in their journey with Christ. I was raised in Arlington, Texas. I earned my Bachelor’s Degree from Baylor University and my Master’s Degree from George W. Truett Theological Seminary. I earned my Doctor of Ministry degree from Beeson Divinity School in Birmingham, Alabama. My wife, Vonda Kay, and I have three children. All of us love Alaska!

Resurrected Life

Today’s post was contributed by Rev. Anita Keire, the author of A Parent’s Guide to Prayer; the ten levels of non-denominational Mustard Seed Series Sunday school [or homeschooling] curriculum for churches, individuals, homes, and religious schools; Resurrection Dialogues with Skeptics and Believers; and Walking on Water: Skeptics and Believers Discuss Whether Jesus Matters. I encourage you to visit her website to learn more: MustardSeedSeries.com.

_____________________________

One thing we can learn from the resurrection of Jesus is that what looked like a dead end is just the beginning of new life. The same applies to the life cycle found in nature. Spring has arrived. Trees and plants are coming to life. Soon they will be in full bloom fulfilling the purpose for their existence.

As we awaken to our own new life found in Jesus Christ, let us commit ourselves to be our Lord’s heart, voice, and hands in this world. For starters, let us reflect on the prayer of St. Francis of Assisi on peace.

Lord, make me an instrument of your peace:

Where there is hatred, let me sow love;

Where there is injury, pardon;

Where there is doubt, faith;

Where there is despair, hope;

Where there is darkness, light;

Where there is sadness, joy.

 

O divine Master, grant that I may not so much seek

To be consoled as to console,

To be understood as to understand,

To be loved as to love.

For it is in giving that we receive,

It is in pardoning that we are pardoned,

And it is in dying that we are born to eternal life.

Amen.

Think about it.

  • Do you agree with this peace prayer? Why or why not?
  • How does this prayer reflect the way we live our lives?
  • Should we take into consideration the fall of our lives? Why or why not?
  • Have you truly internalized this prayer?
  • What does the empty cross image suggest to you?

ALS: A Widow’s Point of View

FALLEN SOLDIERS MARCH® is a 501(C)(3) non-profit dedicated to providing biblical counseling, service dogs, and veteran advocacy. I encourage you to visit their website to learn more about what they do and how you can help.

With Jim Retzke’s permission, from time to time I will post articles from their newsletter. (Jim is president of the organization.) This one is titled “Widow’s Point of View into Operations Desert Shield-Desert Storm 100% Service-Connected ALS.


2 Timothy 4:7: I have fought the good fight, I have finished the race, I have kept the faith.

We met in early fall of 1998. It was Friday night. Keith Button watched me walk past him toward the Virginia Beach’s Septembers Club dance floor.  Keith had decided that after he finished his cocktail and potato skins, his next step was to ask me to dance.  Shortly afterwards completing his beverage, he looked to see where I was, but he could not find me.

A friend and I had left to go to Worrell Brothers on the Virginia Beach Oceanfront.  We had no plans to return to Septembers.  However, two hours passed, and we still didn’t see any of our friends. So, we decided to return to Septembers.  Shortly after we arrived, Keith began walking toward me as we made eye contact.  He saw me roll my eyes at him with disinterest.  He had long spiral curled hair down to his waist, not exactly “my” type.  Keith decided to still “proceed as planned.” If I said no, he would continue walking toward the exit door behind me.

Up close, his burly looks did not match his very polite, relaxed and soft-spoken demeanor. “Yes!” I thought to myself; this Harley riding, pot smoking, tall and handsome dude has “no lines memorized?”  I was quickly reminded of the hazards associated with judging a book by its cover.

Keith was a devoted father, libertarian, Christian and Army Veteran, having served as a Water Craft Engineer in the Gulf War (1987-1991).  He rode a bike; however, did not smoke pot!  Keith’s deep green eyes and kind smile became very attractive . . . minus the long hair!  As he walked me to my car, he offered to give me his number, thinking to himself I would not give him mine.  I told him I will not call. “I am old fashioned – I don’t call guys.”. He politely asked for my phone number, returning one of the biggest smiles when I gave it to him.  I woke up the next morning to my phone ringing. Keith and I talked for hours.  Days led to weeks, weeks to months, and we became inseparable for 18 years.

What was our marriage like?  We planned, strategized like soldiers ready for combat, argued at times and learned to agree to disagree.  No matter what challenged us, we owned it and tackled it “together.”  Keith learned to roll egg rolls like a pro and sweep with a bamboo “filipino broom.”   An Indiana native, he learned to love the beach just as much as I do.  Keith taught me to tile floors, build a flagstaff stone Koi pond and enjoy an organic garden!  Marriage was challenging at times; we both had ex-spouses and three teen age girls in the mix!  We loved to entertain, and friends visited often.  My daughter married and had a baby girl who fondly called him “Grampa.”. Keith was the apple of her eyes and vice versa—I learned to accept being the third wheel.

Our lives were blessed with the companionship of two Shih Tzus named Tobi and Lulu.  Our home was full of love and laughter.  We worked hard at being “debt-free” and managed to vacation on the beaches of the Outer Banks.  We were grateful that through the kindness and generosity of a dear friend, we always had open invitation accessibility to his beach house. Memories of beach horses, grilled rib eyes and seafood feasts abounded!

However, during our summer vacation in late August of 2011, Keith tripped going down the beach house steps, resulting in a limp.  The limp lasted several months before progressing to a “dropped foot.”  Keith saw my chiropractor and several specialists in vain.  Several more months passed, and the dropped foot exacerbated. Keith began dragging his leg while walking, occasionally losing his balance and falling.  Keith’s sprained ankle clearly was getting worse, not better!

What Is ALS? 

Life was not perfect, but life was good.  We had matured as a couple and had arisen to many challenges.  I remember co-workers celebrating my recent promotion at a luncheon.  My employer punctuated this promotion by remodeling my office, replete with new furniture.

On a winter day in 2012, I was eating lunch at my desk while looking out the window; I thanked the Lord for all the blessings in my life—my heart was full.  The phone rang, Keith calling after returning from another appointment concerning his leg.  I could hardly understand him as he was sobbing.  All I heard was “A-L-S . . . 2, max 3 years to live.”  What in the world is A-L-S???  My frantic research began on the internet.  Lou Gehrig, aka “Iron Horse,” played Major League Baseball as a New York Yankee (1923-1939).  Lou Gehrig was diagnosed with ALS, ended his career in 1939, and lost his ALS battle in 1941, just  two years after his initial diagnosis.

“ALS, or amyotrophic lateral sclerosis, is a progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord. A-myo-trophic comes from the Greek language. . . . Motor neurons reach from the brain to the spinal cord and from the spinal cord to the muscles throughout the body.”  www.alsa.org/about-als/what-is-als.html

Keith’s “dropped foot” progressed to a “dropped leg,” causing Keith to lose his balance and fall.  Keith was 6’2″, 250 pounds.  I could not lift him up when he fell to the floor; often I had to call the Fire Department for help.  The local Fire Fighters were an insightful, cheerful team of guys that graciously cheered him up, joking about his beloved “Steelers” to distract Keith from being embarrassed.  Often Keith’s solemn facial expression would quickly turn into a big smile, at times, laughter.  The Firefighters would always arrive within five minutes, no matter what time of the day or night they were dispatched.  As Keith’s falls became more frequent, out of appreciation for the Fire Fighters’ rapid responses, I would pre-make home-made eggrolls, freeze them and have them ready to serve, sweet and sour sauce on the side to hand to them.  Although they were happy to help, it became clear that their service was only an interim solution. Keith’s disease progression signaled I would need additional help and equipment to take care of him.

By the fall of 2014, Keith needed full time home care or VA hospital confinement in Hampton, VA.  Hampton is a thirty-minute drive, much longer during rush hour traffic.  My career was demanding; commuting to the hospital would have only allowed me to see him on weekends.  The progression showed no sign of slowing down, but I trusted God to guide my thoughts and daily path.  The Bible says we are to place our marriage and spouse second only to God.  Consciousness toward biblical knowledge and obedience does not make an immediate decision to walk away from a thirty-year career easier, transforming into a full-time care giver for a disease I knew nothing about.  Immediately I was challenged to learn medical terminology, to accelerate medical equipment and supply deliveries and scheduling home care medical staff, my “new norm.”. The challenges did not end there—I did not have a clue what would come next.

The financial burden was astronomical.  However, because ALS is 100% service connected (predicated upon deployment location and years of service), the VA provided most equipment, supplies and a grant to modify our home.  Unfortunately, the disease progression often accelerated faster than I could obtain time-sensitive critically needed medical equipment and home modifications to adapt to Keith’s rapidly declining independence.

Suddenly, Keith was no longer able to climb stairs, and an Automatic Lift Chair was required to help him reach our second-floor bedroom.  Until installation, Keith was forced to sleep on the first-floor couch.  Keith ultimately required two Hoyer Lifts for each floor to assist me in lifting him off the floor when he fell, into a chair or onto his bed.  Walking with a cane rapidly declined to purchasing a pair of “walkers” for each floor.  Within several weeks, Keith’s impairment deteriorated, prompting the purchase of manual wheel chairs for each floor to facilitate mobility.

ALS Diagnosis Is 100% Service Connected for Gulf War Veterans

“Scientists have yet to find a cause for why America’s military veterans are approximately twice as likely to develop ALS than other segments of our population. The U.S. Department of Veterans Affairs recognizes ALS as a service-connected disease and provides financial and medical support to those with at least 90 continuous days of military service.

“Study after study continues to demonstrate this to be true: If you serve in the military, regardless of the branch of service, regardless of whether you served in the Persian Gulf War, Vietnam, Korea, or World War II, and regardless of whether you served during a time of peace or a time of war, you are at a greater risk of dying from ALS than if you had not served in the military.

“Factors that might contribute to the increased risk of ALS in veterans include exposure to lead, pesticides or other environmental contacts. Tobacco use also increases the risk of ALS, independent of military service.”

Source ALS Association

Ultimately, our home was ADA modified, replete with a ceiling lift, deck and elevator, hardwood floors and wide doors to accommodate a power wheelchair.  The challenge was finding an ADA Contractor who is knowledgeable, efficient and experienced.  Moreover, it was difficult identifying a contractor willing and able to complete the required paperwork expeditiously to transition efficiently to each new construction phase.  The Specially Adapted Housing Grant is available to veterans or service members who are entitled to compensation for permanent and total service-connected disability due to the loss, or loss of use, of both lower extremities.  Currently, the grant is limited to $81,080:

Many challenges exist when constructing an ADA compliant home addition: weather conditions, material availability and inspections.  Additionally, ADA-focused inspections and milestone payments complicate construction progress.  Our VA Grant Administrator warned us, sometimes a veteran passes away before construction is completed.  Knowing how to evaluate and select a seasoned, reliable and trustworthy contractor is a critical decision before beginning a project of this magnitude.

By early spring of 2015, Keith lost complete use of his arms, and a power wheel chair replaced all manual wheel chairs.  VA Grant was insufficient to replace our carpeted rooms. However, we identified supplemental non-profit grants to replace all first-floor carpeted rooms with power wheel chair compliant hard wood to accommodate functionality, an additional $6,000 expense.  God is good; the ADA compliant room addition was completed in June of 2015.

Three years after being diagnosed with ALS, Keith and I celebrated our 15th year Wedding Anniversary in February 2015.  Before ALS, Keith could outrun friends ten years younger than himself and move  machinery weighing in access of 450 lbs unaided while working.  Keith was a “Work Horse” in terms of natural strength, determination and energy.

However, three years after his initial ALS diagnosis, Keith was confined to a hospital bed, kept alive by an oxygen machine and nourished via a feeding tube.  This is a message I sent friends two days before the anniversary party, so they were not shocked after arriving into our home:

“For those who can come, but have not seen Keith in several months, I want to make sure you are prepared. Unfortunately, he is unable to speak or shake hands.  Recently, he began having trouble swallowing and drinking water. So, last Friday he had a PEG surgically installed in his core/abdomen area. The good news is, in just a matter of days, he gained a little hand and fingers function that he lost, improved his nutrition, hydration and even his breathing levels.

Although “he is still very sore in his core/abdomen area,” he is not as fragile as he looks! He still has his wit and will enjoy a conversation, even if all he can do is nod his head. He is able to manually spell out words on his homemade key board and his nurse or I will be delighted to help, if needed.”

My 30+ year contracts and procurement career did not prepare me for the challenges I faced.  Learning the medical terminology and how to use medical equipment was daunting.  In the beginning, we were blessed with a loving and thoughtful nurses’ aide, Suzanne.  Although the VA provided equipment and a nurses’ aide, VA polices, procedures and logistics fostered hassle factors—not necessity, efficiency or effectiveness. Case in point, nurses’ aides can only assist; they are not licensed to legally operate any of the medical equipment.  Simple acts of showering or grocery shopping subjected Keith’s life to risk if any of the equipment required immediate attention or troubleshooting.  I learned how to aggressively strategize, contest and override VA policies that led to the assignment of registered nurses, approved to troubleshoot the oxygen machines and feeding tubes essential to keeping Keith alive.

After 4.5 years, Keith and I lost our battle with ALS.  Keith returned to be with the Lord on January 22nd of 2016. I remember sitting in the Emergency Room, hearing the heart machine stop, watching the hospital staff swarm over him. I was only able to see his feet from my vantage point.  A nurse stood guard, keeping me away from Keith as they tried to resuscitate him.  I remember praying, asking the Lord that if I lost Keith that God would let me know that Keith went to heaven.  Unexpectedly, I saw an opportunity, I quickly passed by the nurse, grabbed both of Keith’s feet to caress, crying with heartache and anguish for the state of my husband.  I recall gazing up toward the heart monitor machine, and Keith’s heart began beating again. Within seconds, the nurse pulled me over, isolating me away from Keith’s  bed. The machine quickly lost its sound and displayed Keith’s heart stopped beating.  I am forever grateful for our good friends, Kathy and David, who were kind enough to come to the hospital to help me face the darkest time of my life.

On the same day, I praised God for answering my prayers.  Unbeknownst to me, Keith had generated and sent me an e-mail using his “Eyegaze” equipment two days prior to his death, a message I read the night of his passing:

“I have been praying to Jesus for direction.  I believe that He is not done with me.  He wants me to help others and save them from the misery and pain.  I believe that is why he put me through this to humble me.  To know the pain so others won’t.”

Knowing in my heart that Keith is in Heaven has provided the comfort I needed to pick up the pieces and look forward to what God had in store for me next.  Keith would not want me to feel sorry for myself, be bitter or sad.  Keith knew I am happiest caring for others; he would want me to share what I learned with all patient caregivers and veterans diagnosed with Motor Neuron Diseases: ALS, Multiple Sclerosis, Parkinson’s Disease along with a myriad of other debilitating diseases.

It’s 2019, I praise God as I write this article.  I was gifted a new life and my career has been restored.  I was even given yet another chance at love with Jim Retzke, President of Fallen Soldiers March (FSM) who like me is a devoted Christian with a passionate heart driven to assist veterans and military families challenged by the “consequences of war.”  FSM lovingly gifts Certified Biblical Counseling, Service Dogs & Veteran Advocacy to our National Heroes.

If you or your veteran suffers from motor neuron diseases, as the Fallen Soldiers March Director of Veteran Advocacy, I am passionately connected to your journey.  I will walk, stand by and fight with you to get not just what you need—I will work diligently to get it when you need it.

by Gigie Button, Fallen Soldiers March Director of Veterans Advocacy