Ramblings of a Caretaker

My ramblings are about being a caretaker. My wife of 35 years has a Parkinsonian disorder. She does not have an exact diagnosis yet, but her current movement disorder specialist suspects it is corticobasal degeneration after reviewing her symptoms and scan images. This is a cruel slowly debilitating disorder, but my wife’s spirit is strong in the Lord. She smiles and laughs at her messiness. She prays with tears. How is God answering her?
My wife often needs my help. She calls upon me to open small packages for her. She cannot use scissors. She struggles to connect her iPhone to a charger. She shakes. I help. She eats sloppily. She doesn’t want to eat in pubic. Sometimes I feed her. She doesn’t cook anymore. Fortunately, she can walk, but her brain-to-feet connection doesn’t work when going up or down stairs. She would fall without holding on to me or a railing. It’s a fear of falling. I help her shower because I don’t want her to fall. I help her clean body parts she cannot reach. (Yes, we enjoy being intimate in the shower. The disorder has not stopped us from enjoying intimacy.) I comb her hair. I help her put toothpaste on her toothbrush.
Sometimes I say “No.” She asks me to do something for her and I say “No, you need to try to do that. You need to struggle with it. If I do everything for you then it wears me out and you forget how to do things.” Everything takes more energy for her to do so she gets tired, but sometimes she gets lazy. So, I say “No. I think you can do that. I will show you a better way to do it.” I often help her dress because she’s slow and I’m impatient. Sometimes I let her struggle with clothing. When we’re getting ready for church, I help her dress. I must get to church on time.
Sometimes I get impatient as her caretaker. When I get impatient, I ask myself, “Would I rather be the caretaker or have the disorder?” I think you know the answer. It may not be an appropriate question, but it keeps me honest and serving her. If the roles were switched, then she would not be able to do for me what I do for her. If God has anything to do with this disorder, then at least He got this right.
When I get impatient, I think about how God gave us to each other 35 years ago. A boy from Western PA met a girl from Hong Kong. We met serving the Lord and became soul mates. God blessed us with three children. I pray for the health and strength to take care of my wife. It hurts me to see her struggle. I hold her and want her to be healed. I made a promise to her 35 years ago, and as God gives me health and strength, I will be her compassionate caretaker.

Dealing with Loss and Grief

I enjoy listening to the teaching of a pastor in CA. The church is known for its emphasis on the supernatural ministry of Jesus Christ through His church. The church has experienced and recorded miraculous healings. Recently, the pastor’s wife died after a battle with cancer and many prayers for her healing. I listened to the pastor pour out his grief, tears, and broken soul. I wept with him. He preached a powerful message about loss, grief, and communion. I applied the ideas from his powerful message to chaplaincy and dealing with loss and grief.

My goal as a chaplain serving people who are grieving or mourning after a significant loss is to ‘usher’ them into the presence of God. God does the comforting. “Blessed are those who mourn, for they shall be comforted” by the God of all comfort.

Any loss that produces grieving will lead a person in one of two directions, either into unbelief or the comforting presence of God.

Unbelief: Mark 16:9-13: 9Now after He had risen early on the first day of the week, He first appeared to Mary Magdalene, from whom He had cast out seven demons. 10 She went and reported to those who had been with Him, while they were mourning and weeping11 When they heard that He was alive and had been seen by her, they refused to believe it. 12 After that, He appeared in a different form to two of them while they were walking along on their way to the country. 13 They went away and reported it to the others, but they did not believe them either.

The disciples were mourning and weeping over the death of their master and friend, Jesus Christ. Their grief led to unbelief. They refused to believe the testimonies. (They probably reasoned, “If Jesus is alive, then He would appear to us first.”) Why unbelief? They had lost all hope.

The Presence of God: 2 Corinthians 1:3-4: Praise be to the God and Father of our Lord Jesus Christ, the Father of compassion and the God of all comfort, who comforts us in all our troubles, so that we can comfort those in any trouble with the comfort we ourselves receive from God.

Hope is what makes the difference and leads mourners into the comforting presence of God. 1 Thessalonians 4:13: 13 But we do not want you to be uninformed, brethren, about those who are asleep, so that you will not grieve as do the rest who have no hope14 For if we believe that Jesus died and rose again, even so God will bring with Him those who have fallen asleep in Jesus.

The grieving of those who have hope leads into the presence of God. The grieving of those who have no hope leads to a heart of unbelief and they will not experience comfort from “the God of all comfort.”

So, my goal as a chaplain serving people who are grieving and mourning after a significant loss is to ‘usher’ them into the presence of God with hope. God does the comforting.

 A story that perfectly illustrates this point is found in The Case for Heaven, chapter 5, “Heaven: A Guide” (pgs. 99-101). It’s the story of Sarah Salviander. Sarah grew up an atheist and earned a doctorate in astrophysics. She had physics professors who were Christians and influenced her to consider the truth of Christianity. As she studied the complexity and fine-tuning of the universe, she was awakened to the truth of Psalm 19. She put her trust in Christ, but a personal tragedy moved her faith from intellectual assent to personal trust and hope. Her first child, a girl named Ellinor, was stillborn. Nurses allowed her and her husband to stay in the hospital room and hold their deceased baby. Sarah bonded with Ellinor. Sarah said, “Sadly, what I had bonded with was a tiny lifeless body. Grief does a lot to twist our thinking, and as awful and crazy as it sounds, I felt like it was my motherly duty to be buried with Ellinor.” What rescued her from a twisted and depressed grief was hope, the hope of heaven. Sarah realized she could let go, and that Ellinor would be parented by her heavenly Father himself. She said, “Knowing she was safe in a realm of indescribable love, joy, peace, and beauty – and that this was the place where we would eventually be reunited – I was finally freed from despair. I experienced a vision of Ellinor’s body being gently taken from my arms by God and carried up to heaven, and that was the precise moment I had peace. There was no better place for her to be, and as a mother, that was the only way I could really let her go.”

A dark grief pulled her in the direction of despair and unbelief. Grief with hope lead her to the God of all comfort and healing.

Guidance Confirmed by Signs

I am considering how God gives signs to confirm His will. God gave many signs in the Bible. God’s use of signs is meaningful to the people He gives the to. We have been planning to move to Dallas Texas for a while, but I was apprehensive. I wanted to be sure it was really God’s will. When we moved into our rental house my wife told me she has been sleeping peacefully. She considers this a sign from God confirming the move. It is her meaningful sign.

My sign was very different. As I was driving the U-Haul on the M-Bridge over the Mississippi River I turned on the Christian radio station. It was in the middle of the song Egypt by Cory Asbury and the lyrics “You’re the God who fights for me, Lord of every victory, hallelujah. You have torn apart the sea, you have led me through the deep, hallelujah.” I felt the Lord say to me “I have torn apart the Mississippi and led you over its deep to a Promised Land.” (Texas is not THE Promised Land, but many Texans will disagree with me.) The Hebrews crossed the Red Sea to their Promised Land and my family crossed the mighty Mississippi to get to ours. God was going before us. It was the “sign” that was meaningful to me. Here’s my point: When God gives you a sign to confirm His guidance it will be meaningful to you but probably not to other people.

God had given us other confirming signs and I could write more about those.

Thankfulness: God Permits What He Hates

First, I give thanks for what God can do in or with the evil circumstance to achieve a greater good. This truth is expressed in the saying, “God permits what He hates in order to accomplish what He loves.” I think the most significant event God hated but permitted in order to accomplish what He loves was the crucifixion of His one and only Son. I think God hated to see His one and only Son scourged and nailed to a cross just as I would hate to see it happen to my one and only son. Can a disease be understood this way? If the disease is accomplishing something in the soul that God loves, for example, humility, generosity, and most importantly a deeper love for God and other people, then Yes.  

I heard this in chapel from a song played by our chief chaplain: “May your bad days prove God is good.” Bad days give God the opportunity to demonstrate His goodness. These two statements are an expression of Romans 8:28.

Second, I give thanks for how PD affects our relationship. “Love is the ultimate and highest goal.” Viktor Frankl came to this realization seeing the image of his wife while he suffered terrible deprivation and humiliation in a Nazi death camp. He wrote, “I did not know whether my wife as alive… but at that moment it ceased to matter. There was no need for me to know; nothing could touch the strength of my love, my thoughts, and the image of my beloved. Had I known then that my wife was dead, I think that I would still have given myself, undisturbed by that knowledge, to the contemplation of her image, and that my mental conversation with her would have been just as vivid and just as satisfying. ‘Set me like a seal upon thy heart, love is a strong as death.’” (Frankl quoted Song of Solomon 8:6.) PD has deepened our love for each other.

Third, I give thanks for the “secret of contentment” in every trial (Philippians 4:11-13). The ‘secret’ is God gives peace, wisdom, and strength; therefore, I am content. I give thanks for “sufficient grace”. Sufficient grace was given to Paul when his “thorn in the flesh” would not be removed (2 Corinthians 12:7-10). Whatever trial God permits us to experience to accomplish what He loves will be accompanied by His sufficient grace.

Finally, I give thanks because every disease that is an effect of the sin curse upon creation will cease to exist in Christ’s new kingdom. Read Revelation 21.

Parkinson’s & Thankfulness (Pt1)

The inspired Word of God says (1 Thess. 5:16-18), Rejoice always; pray without ceasing; in everything give thanks; for this is God’s will for you in Christ Jesus for you.
I struggle with “in everything give thanks,” or “give thanks in all circumstances.” How do I do this with my wife’s PD? Am I supposed to thank God for giving her PD? Am I supposed to thank God for permitting her to have PD? “Thank you, God, for allowing my wife to have PD.” NO! It is not something good to give thanks for.
We do not give thanks for PD. It is evil. It is an effect of the curse of sin upon creation. Every disease is evil and an effect of the sin curse upon creation. We never give thanks for evil. We do not give thanks for diseases, tragedies, or death.
The good God only creates good. Genesis 1:31: And God saw everything that he had made, and behold, it was very good. And there was evening and there was morning, the sixth day.
What are we giving thanks for?
We give thanks for what God can do with PD. We do not give thanks for pandemics, wars, death and destruction. Satan causes wars. Evil people full of greed cause pandemics and wars. We do thank God for what he can do with what evil people cause. God uses pandemics and wars to accomplish his purposes in the world. “God permits what He hates in order to accomplish what He loves.” If the only way for God to achieve his greater good in our sinful world is to permit wars and pandemics, then we trust him to work all things together to accomplish his good plan.
I give thanks for what God can do with my wife’s PD. It’s Romans 8:28. God can work it together for good. I am seeing some of the good now. It is good I did not expect in a way I did not expect it. It is good I was blind to in my initial reaction to my wife’s diagnosis. I questioned God, “God, I know what Romans 8:28 promises, but how can there be any good in this? God, Psalm 139 says, ‘For you formed my inward parts; you knitted me together in my mother’s womb… Your eyes saw my unformed substance; in your book were written, every one of them, the days that were formed for me, when as yet there was none of them.’ When you formed my wife in her mother’s womb, did you write in the book of her life to have PD when she was 62?”
I don’t know. I will, however, give thanks for how God can use it in our life and love together.

The Lord’s Prayer

I added a new request to my expanded version of the Lord’s Prayer. I pray this daily.

My Father who is in heaven.
Thank you for giving Your one and only Son.
By Your great love You have made me Your child.
May Your Father’s love be perfected in my heart and mind
and remove all fear of condemnation and judgement.
May Your holy name be honored in my speech and actions today.
May Your kingdom come. Maranatha, come Lord Jesus!
You have made me a citizen of Your kingdom.
I live under the authority and protection of Your kingdom today.
Your kingdom has an army of angels to serve and protect
those who love You and are called according to Your purpose.

May Your will be done on earth today as it is in heaven.
May Your will be done in my life today
according to the good purpose and plan You have in heaven
to bless me and make me a blessing to others.
Supply all my needs today
(spiritual, physical, mental, emotional, financial)
as I seek first Your kingdom and righteousness.
Cleanse any bitterness and resentment from my heart,
and forgive my sins as I forgive anyone who has sinned against me.
Do not lead me into trials today,
but lead me into the abundant life you promised.
Do not allow me to be tested beyond what I am able to resist,
but empower me to remain steadfast amid every trial.
Deliver me from all temptations of the world
and the fearmongering lies and schemes of the Evil One.
The kingdom, the power, and the glory belong to You
and will one day fill the new heavens and earth.

Parkinson’s Disease and Accidents

I was sitting at my desk reading emails on my computer. The door to my home office suddenly opened and my wife entered. Her eyes shouted fear and her hand was wrapped in bloody tissues. She said with tumbling voice, “I cut my finger.”

PD has made cutting an apple difficult for my wife. She sticks a knife in the apple. Instead of pushing down on the knife through the apple, she pounds the apple with the knife sticking in it on a cutting board. I sit in my home office, and I know when she is cutting an apple in the kitchen… thud, thud, thud on the cutting board… as she tries to cut through the apple. I thought it was because of a dull knife. So, I sharpened it to make it easier for her. I knew a sharp knife would be more dangerous. It was. She sliced her finger open while trying to cut out the core of the apple.

She entered with a face of distress and her hand wrapped in a bloody tissue. I was afraid to look at her hand. I led her to the bathroom and had her sit down. I did not have any rolled gauze or pads. I cut up an old t-shirt. I took off the bloody tissues. I looked at the finger. I calmed down. She calmed down. I washed off the blood. I wrapped strips of the old t-shirt around the finger and hand. I wrapped first aid tape around the cloth strips. I said, “First, we stop the bleeding. Use your good hand to put pressure on the bleeding finger and elevate it.”

Why am I writing about this incident?

I’m trying to interpret the feeling I had in the moment I saw the fear in her eyes and the bloody hand. That flash of feeling was not just compassion. It was fear. I felt anticipatory grief. In a moment I thought about how I would feel if she died. My heart would sink in pain. I felt loss. In that moment I felt deep love for her. That’s love.

If you are a caretaker of a spouse with PD then you need to be prepared for accidents. They will happen. My wife had a car accident. My wife fell and broke her front teeth. You cannot panic. Respond as a peaceful reassuring presence to sooth your spouse’s anxiety and his/her feelings of frustration and self-condemnation. You should not devalue your spouse’s dignity with blame or shame. Let love rule the accident. Let love heal the moment.

Parkinson’s and Saved by Love

We are saved by love.

Viktor Frankl was marching down icy road at night with other prisoners from the Nazi death camp. One prisoner said, “If our wives could see us now! I do hope they are better off in their camps and don’t know what is happening to us.” This caused Frankl to think about his wife. His mind clung to his wife’s image. He heard her speaking to him, smiling at him. “Real or not, her look was then more luminous than the sun, which was beginning to rise.”

“A thought transfixed me: for the first time in my life, I saw the truth as it is set into song by so many poets, proclaimed as the final wisdom by so many thinkers. The truth – that love is the ultimate and the highest goal to which man can aspire. Then I grasped the meaning of the greatest secret that human poetry and human thought and belief have to impart: The salvation of man is through love and in love. I understood how a man who has nothing left in this world still my know bliss, be it only for a brief moment, in the contemplation of his beloved.” (Man’s Search For Meaning: an Introduction to Logotherapy)

In the most despicable Nazi death-camp conditions, Frankl found temporary relief of suffering through and in human love. Love enabled him to “know bliss” and escape the physical suffering he was experiencing. Love is the ultimate and highest goal to which man can aspire because God is love. 1 John 4:16: So we have come to know and to believe the love that God has for us. God is love, and whoever abides in love abides in God, and God abides in him.

Frankl did not fully grasp the truth he saw. The Bible affirms that the salvation of mankind is through love and in love. John 3:16: “For God so loved the world, that he gave his only Son, that whoever believes in him should not perish but have eternal life.” We are saved by the love of God.

Parkinson’s tests love. But it also reveals the saving power of love. Parkinson’s is healed through and in love – the love of the caretaker, the love of family, the love of a PD support group, and most importantly the love of God. The salvation of my wife with Parkinson’s is through love and in love. I am learning the truth that love is the ultimate and highest goal. Loving God and my wife is the ultimate and highest goal to which I can aspire.

Love & Parkinson’s: WHY?

Chief Chaplain Don Fuller at the Veterans Administration Medical Center told a story at chapel service Sunday. The story was from the previous chief chaplain who had an autistic son with inability to speak clearly. They had to leave a church because the church could not accept the son. The father questioned God, “Why did you give me an autistic son?” One day the father was working in his garden. His autistic son walked up to him and said with clear speech, “God gave me to you so you would learn to love more deeply.” The father was shocked! After speaking clearly, the son reverted to his autistic speech.

The Spirit of God spoke to me in the story. I have been asking a similar question, “God, why is this happening to Sandie? Why are you allowing this to happen? I know you could heal her brain with a word, so why?”

So, I thought, “God, is that the reason for Sandie’s Parkinson’s? Is it so I can learn to love more deeply? I have been made aware of my selfish impatience and anger. 1 Corinthians 13 says love is patient and kind, and I have not been patient and kind toward Sandie. But how is that fair to Sandie? You give her a disease so I can learn to love more deeply… how is that loving her? She doesn’t like having Parkinson’s. It’s a burden for her. If you really loved her then you would heal her.” I said this and asked the questions of God as I was walking around my neighborhood.

Then I heard the Spirit whisper in my mind, “It’s about love.” I questioned again, “I can see how it’s about love for me, but how is it about love for her?” The Spirit answered, “You are learning to love more deeply. She is feeling your love more deeply.” I said, “So for her it’s about feeling loved by me. I’m giving more and she’s receiving more.”

I now realize the reason is love for both of us. For me it is to love more deeply; to love my wife as Christ loved the church. For Sandie it is to FEEL LOVED more deeply by me. According to the five love languages, I know the way she feels loved is “acts of service”. I am doing more acts of service to help her, so I am speaking her love language a lot more now. She frequently says, “I am so grateful for you.”

Love & Parkinson’s Disease (PD)

This reflection is about my reaction to my wife’s diagnosis of PD. PD has revealed something about me I dislike and needs to be changed. It has also revealed the healing power of love.

My wife, Sandie, was experiencing mysterious symptoms a year ago. She went to a neurologist who diagnosed her with Essential Tremor. She took medication that did not do anything for her. A friend at church told her about a Chinese neurologist who had a new treatment called TMS (TMS = transcranial magnetic stimulation). This neurologist immediately diagnosed her with Parkinson’s. The Chinese neurologist works with Parkinson’s patients and recognized the symptoms. The new diagnosis caused fear but also relief to get the correct diagnosis.

Parkinson’s has been a test of faith for both of us. Sandie’s struggle with Parkinson’s has revealed my impatience and unkindness. Bible says love is patient and kind, and I have not always been patient and kind with Sandie’s struggles. This reveals my selfishness. Sandie will often ask me to help her to do something, like cooking, open a bottle for her, or help her dress. I get impatient because she asks me when I am doing “my own thing”. She texted me at work one day to tell me she made a big mess trying to make a smoothy in a blender. She was making the smoothy with a lot of calories to gain weight. She requested my help to make a smoothy for her when I got home. When I worked with her to make the smoothy I became impatient and showed it. At first, I supervised her as she tried to add ingredients to the smoothy and spilled. I became impatient teaching her to do it an easier way. I said, “Why can’t you see there is an easier way to do this? You can’t see there’s an easier way. How is that related to Parkinson’s?” Sandie went to the bedroom and cried. She cried because of her inability, loss of coordination, and I was a selfish impatient jerk. Her Parkinson’s has revealed that I can be a selfish impatient jerk.

One the other hand, it has also deepened our love for each other. When I make her cry because I am an impatient jerk, I apologize and hold her and say, “I’m sorry. I was impatient. It’s not your fault. You can’t help it. I love you.” She says, “I’m so thankful for you. I love you.” That touches me and makes me cry. So, we cry together and reaffirm our love for each other.

I will write more about the healing power of love in future posts.