The Four P's

Wednesday, October 25, 2023

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Photo: Squash harvest September 2023; 1 Butternut, 3 Delicata. Gail K. Kachnycz


INTRODUCTION:

     I didn’t set out to learn the four “P’s.” One evening during the period when Mike was receiving hospice services (2019 or 2020), my older son and I were having a conversation in the car. I can’t recall how the topic of life lessons came up, but my son asked, “What have you learned from Dad’s illness?” The first word that popped out of my mouth was, “patience,” followed quickly by “prayer.” Later, as I thought further, “perseverance” and “poco a poco” (little by little) were identified.

     People have commented, “You are so patient,” or “You are a prayer warrior.” I did not intentionally identify these character traits as goals for my life. I learned these lessons simply because there was no other way around or through what I was facing. Mike’s diminishing energy meant things had to be done slowly, little by little. We experienced situations where there were no human answers and prayer was the only option. Chronic illness is chronic, so perseverance is a skill that will be developed (whether we plan it or not!).

     Because the lessons are learned slowly, we may be surprised when someone says, “You are so patient.” As we learn these skills over time, we will be able to recognize the power of prayer and that answers to prayer and God’s timing may not be immediate (perseverance, patience, poco a poco). An example from our experience is the story of “The Miracle Machine,” which I will describe in a separate essay.

 THE FOUR “P’s

by Gail K. Kachnycz; 01 March 2021 

    The care giver for someone with chronic illness will learn “The Four P’s:”

1. Prayer

2. Patience

3. Perseverance

4. Poco a Poco (little by little) 

PRAYER

     “I have been driven many times upon my knees by the overwhelming conviction that I had nowhere else to go. My own wisdom and that of all about me seemed insufficient for that day.”

-Abraham Lincoln 

     The circumstances of chronic illness may be so overwhelming that we find ourselves driven to our knees, figuratively and perhaps literally. Since we find ourselves in this posture, prayer is the natural next step. The type of prayer is not a rote repetition of a memorized verse of petition. It is a heartfelt outpouring of a person’s thoughts and feelings; true communication with God.

     Prayer may take many forms. “Pray-reading” the scriptures involves reading verses that state the truth about God’s character and His purpose and promises for us, then agreeing with them. This may be done quietly in our spirits, spoken with our voices, or written in a journal. The person with chronic illness and/or the care giver may surround themselves with prayer supporters. The groups may be small (2 or 3 gathered) and increase in numbers of participants (see Blog Post on Prayer Circles). Praying with others provides immediate support and seeing the answers to specific requests is encouraging to the person in the center of the circle and all who surround them.

     Prayer is powerful. Other aspects of prayer for those with chronic illness and for their care givers will be addressed more fully in other articles. 

PATIENCE

     The care giver of a person with chronic illness will learn patience. Expect this and plan for this.

     Chronic illness, by its very nature, will cause impaired physical function and possibly affect mental abilities. Activities of daily living, such as hygiene, bathing, dressing, eating, walking will take more time. Allow the loved one to do as much as they can for themselves. This will help preserve not only their level of function, but their independence and sense of dignity.

     The ability to think quickly or speak quickly may be impaired. Fight the urge to supply words or complete the end of sentences. Wait, wait, wait. Allow the loved one to find the word or thought and express it. Conversations will be slower. Get used to the slower pace.

     The chronically ill person may be well aware of their decline and be frustrated by this. It can be very hurtful if they vent their frustration in your direction. Learn to recognize what is happening. Be patient, examine your own heart, and when you can talk to the person without defensiveness or retaliation, talk it over and clear the air. Don’t ignore it; this will lead to resentment. 

PERSEVERANCE

     There is no escaping chronic illness, so you will learn to persevere. A care giver may want to leave the situation if he or she is feeling burned out, and there is no end in sight to the demands of care giving. Respite breaks, self-care “me” time, prayer partners and counseling support should be in place to address the stress of care giving.

     The journey through chronic illness and care giving will provide plenty of opportunities to develop perseverance. Insurance red tape, billing errors, miscommunication with or between health care providers will all require perseverance to unravel and correct them. In these situations, it is helpful to have connections with others dealing with these same types of issues. They will immediately understand what you are going through, can pray “with understanding,” and may be able to offer practical suggestions on how they have managed a similar situation.

     Sometimes perseverance will not require any overt action on your part. You will just need to remain steadfast, trusting in God, until the circumstances change. Perhaps the loved one requires multiple surgeries or a series of medical treatments. Just hang in there, just keep going. The Lord knows your limits and will sustain you through this.

     Perseverance is easier when there is a purpose or goal to be achieved. Hardship can be endured, knowing that the desired result requires sacrifice. Examples include athletes or those who pursue a difficult course of study, or those who work hard to make a business successful. In chronic illness, discouragement and an attitude of “What’s the use?” can creep in. A positive outcome may be off the table. There can still be goals to achieve, but the focus may have to shift. The question may need to change from, “What can I achieve?” to “What can I share for those who follow after me?” Leaving a legacy is important. Showing perseverance in the face of adversity is an example worthy to follow. 

POCO A POCO

     Little by little is the method needed to achieve any goals in chronic illness. Fatigue or lack of endurance limits the time that can be devoted to a task. The demands of everyday routines, especially if needing to work while managing chronic illness, or navigating numerous medical appointments, shorten the time that can be devoted to other pursuits, whether practical or personal. Don’t give up (persevere!), but learn to approach the project in small segments.

     Breaking down a project into its component parts requires planning. Some people, who have the gift of helps or administration, are good at planning. Others may feel overwhelmed and not know where to start. The person with chronic illness and/or the care giver may want to ask for help to divide a project or task into manageable parts. 

     Examples for a family event might be:

1. Deciding what tasks can be done well in advance (purchase non-perishables, cook/freeze food).

2. Determining what tasks can be delegated? (transporting guests, organizing games/activities, making or buying party favors?)

3. Making a schedule for the week leading up to the event, assigning tasks for each day, so that energy can be reserved for the day of the event.

4. The event itself may need to be “poco,” that is, smaller in scale. Did the host previously buy/prepare all the food? Perhaps consider asking guests to bring a dish to share or purchase prepared foods if budget allows.

     Almost any task or goal can be achieved this way, little by little. It may be disappointing to realize that activities that were once performed with ease must now be planned and divided into manageable parts. There may be periods of denial and grieving the loss of function or abilities before the transition to the new normal. This can be frustrating, but it is another opportunity to exercise patience as the process of using the new approach unfolds.

     Just being aware that the Four P’s will be needed, and expecting them, can smooth the path of chronic illness. Recognizing what is happening, and planning to adjust, can reduce stress. Knowing that this process of supports has been experienced by others can reduce feelings of isolation and reserve strength for what is valued to be important. 

     “And not only this, but we also exult in our tribulations, knowing that tribulation brings about perseverance; and perseverance, proven character; and proven character, hope; and hope does not disappoint, because the love of God has been poured out within our hearts through the Holy Spirit who was given to us.” Romans 5: 3-5   

Photo: Tiny butternut squash 5 August 2023. Gail K. Kachnycz
Photo: Butternut squash ready for harvest, 8 September 2023. Gail K. Kachnycz
Gardening requires patience, perseverance, and doing projects "poco a poco."
While kneeling to pull weeds, it is the perfect posture for prayer.


  

  

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Prayer Pillars

Wednesday, October 18, 2023

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FOUR PILLARS OF PRAYER SUPPORT

by Gail K. Kachnycz;  29 March 2021 

     As chronic illness progresses, especially if the loved one is placed on palliative care or hospice status, there may be a change in the prayer focus. It is time to pray according to

2 Corinthians 4:16

Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day

     Unless he or she is unconscious, the love one still has a role in the family and can contribute guidance and share their legacy. The loved one needs prayer support especially at this time. Usually, the prayer requests and support of this nature are shared only with family, pastoral care staff, and the inner circle of prayer supporters. Share according to the comfort level of the loved one.

     In Mark Chapter 12, Jesus identifies the Greatest Commandment. 

     Love the Lord your God with all your heart and with all your soul, and with all your mind and with all your strength. Mark 12:30 

     Jesus is referring to the Shema Yisrael, the prayer contained inside the Mezuzah, the box affixed to the doorpost of every Jewish dwelling. It was a constant reminder to love the LORD God with every part of the being, the complete self. It is also a good pattern to use to pray for the loved one, since it encompasses the entire person, both the external/physical and the internal/essence.

     Although the pattern for prayer lists the order of heart/soul/mind/strength, I find it somehow more logical to start with the physical and then proceed through the non-physical layers of the person. Here’s how I pray:

     Strength: The physical needs of the loved one with chronic illness are the most obvious. I pray for strength, relief of symptoms, and support system. Prayers for healing are included here; there is a separate essay on miraculous healing. However, I feel that if the symptoms subside, and the person experiences full relief and function, this is what is needed regardless of the results of medical tests or imaging. Modern medicine may be the healing method. For me, all are acceptable if the loved one is experiencing relief and has a sense of wellness.

     The support system encompasses all medical providers, family and other caregivers, and insurance/billing. Dealing with the medical system can be exhausting. Changing insurance providers usually involves are period of billing the wrong insurance and multiple follow-up contacts to correct the misinformation. Throughout our experience with chronic illness, prayer requests for cutting insurance red tape, pre-authorizations, and incorrect billing have often been at the top of the list. Our transition to Medicare was anything but smooth. If you have insurance provided by the government, you may be dealing with formularies that do not include the medications that are most effective for your loved one. We have seen amazing breakthroughs in both physical status and treatment authorizations when concerted prayer has been applied. 

     Mind: For many, the medical issue is dementia or mental illness. In other conditions, the physical impairment may lead to poor oxygenation or dehydration, which can result in confusion. Some medications required for pain relief or other reasons may have drowsiness as a side effect. I pray for a clear mind for my loved one, wisdom for guiding the family through decisions, and plans to get our house in order and leave a legacy. In our situation, physical impairments have not affected the role of head of the family.

     Soul: I see the mind as the source of reasoning, thinking, and logical decision making. For me, the soul is the seat of emotions. My prayer for matters of the soul begin with protection for the emotions from discouragement and depression. These moods easily come unbidden as the loved one struggles with pain, thoughts of death, and grieves progressive loss of function. The enemy knows that emotions are a particularly vulnerable opening to spiritual oppression. The loved one needs the protection of prayer support in this area. I also pray for the sustaining grace of the joy of the Lord (Psalm 28:8) and peace that passes understanding (Philippians 4:6-7).

     Heart: I have viewed the heart as “the me that is me,” the essence of a person regardless of failing strength, dulling of the mind, or changing emotions. The heart of a person is what God created a person to be, it remains unchanged and continues into everlasting life. At the heart of a person is the purpose that God created them to fulfill, regardless of how long or short their life on earth may be. When I pray for the heart of my loved one, I pray that he will fulfill the purpose that God intended for him, and that his life will draw others closer to God and the hope of salvation in Christ.

     Conclusion: This pattern for prayer was revealed to me when my loved one was on hospice status. The decision to enter hospice care has a certain finality to it, and can foster a “What’s the use?” attitude toward prayers that are forward looking. However, I hope that this pattern for prayer demonstrates that we can say with the Apostle Paul, “I have learned to be content whatever the circumstances.” (Philippians 4:11) This fourfold prayer can be used to support anyone, whether or not they are experiencing chronic illness.


   Photo: Gazebo at Longwood Gardens, Kennett Square PA 14 September 2023 by Gail Kachnycz

 

      

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Prayer Circles

Wednesday, October 11, 2023

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PRAYER SUPPORTERS/PRAYER CIRCLES

by Gail K. Kachnycz; 04 March 2021

      A person experiencing chronic illness and their care giver will need prayer support throughout their journey, however long or short. Most people have an informal network of those they rely on for prayer. As chronic illness continues or possibly worsens, developing a more organized network of support may be helpful.

     The model demonstrated by Jesus is described in the Gospels. The inner circle shared the most intimate relationship and support (Peter, James and John). The other disciples formed a wider circle, but still received special training and attention. Beyond the twelve were other devoted followers, many of whom were in the group of 120 in the upper room. Beyond this group was the wider world of all believers.

     The person with chronic illness and their care givers have experiences that overlap in some areas and differ in others. In my experience, each individual needs their own set of prayer circles. There will be a few (Peter, James and John) that share the most intimate details of the struggles. Serious issues, but not as deep, are shared with a small group (similar to The Twelve). This should be a group in which the person feels comfortable and whose members know how to protect confidential information. The next level is probably the church-wide prayer chain; support for general concerns are listed there.

     For practical instructions on setting up prayer circles, see Chapter 12, “Personal Prayer Partners,” in the book Possessing the Gates of the Enemy by Cindy Jacobs. She describes how to identify and invite those who would be the inner circle and the slightly larger group of those who are committed to pray. She also lists some cautions and safeguards to include, since you are sharing personal concerns and need confidentiality and well-defined boundaries.




 


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Crushed

Wednesday, October 4, 2023

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By Gail K. Kachnycz; 27 February 2021

     Crushed. This word rarely has a practical point of reference in modern society. If someone is disappointed, they may be described as crushed, but they are really more crestfallen. “Crushing it” is slang in the pop culture for an excellent performance or achieving a goal quickly and easily. Most people don’t have to physically crush anything during the routine of their daily lives.

     In the time of the Bible, grinding grain to flour was an everyday activity. At the time of harvest, grapes were crushed to make wine and olives were pressed to obtain the oil. Everyone was familiar with these methods and often many were involved in the process. The word “crushed” would have immediately been connected to an experience common to daily life.

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Laugh/Cry/Inspire

Monday, October 2, 2023

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Photo: Gail K. Kachnycz October 2023; Sunset on the Bay, Ocean City NJ

Recommendations will be listed soon

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Government/Legal/Financial

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Photo: Gail K. Kachnycz; Sidling Hill Plaza, PA Turnpike, October 2022

RESOURCES: GOVERNMENT, MEDICARE, and MORE

 New 2 October 2023

http://www.myreps.datamade.us       

     website to find your government officials: local, state, federal

 https://www.ssa.gov

     Social Security website

 https://www.medicare.gov

     Medicare website

 https://www.hhs.gov

     Health & Human Services website; criteria for eligibility for Medicare in the USA

https://sanmateo.networkofcare.org/library/article.aspx?id=131

     At the Website Homepage, click on “Library” then enter “Checklist: After a Death”

in the search field. This lists all the steps to take when a death occurs at home.

This article is specific to San Mateo County, California but is a good guideline.

Contact the Coroner’s office in your own county for requirements in your local area.

 

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RESOURCES: COMMUNITY and SUPPORT

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Photo: Gail K. Kachnycz; Pop-up Shop at the Art Museum Philadelphia PA October 2023

New 3 October 2023 

Book

When Someone You Love has a Chronic Illness- Hope and Help for Those Providing Support

     By Tamara McClintock Greenberg, Psy.D.

 

Websites

Enter the diagnosis in the search bar of your browser.

     Most chronic illnesses have information for patients/families. 

https://rarediseases.org

     National Organization of Rare Diseases. If your loved one has a rare disorder, with too few affected to have a designated organization/association, check this website. 

https://communitysupportconnections.org

     This organization is based in Canada, but has a recorded session on Compassion Fatigue for Caregivers. Through the magic of Zoom, you may be able to view the recorded session or join a live-streaming session if this is presented again. 

www.americasgardencapital.org

     Lists 38 public gardens in Philadelphia PA and surrounding counties, includes accessibility information.

 

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