Phil & Dona began attending New Covenant Bible Church in 2014. As Phil's health declined, Dona served as his caregiver for the majority of his illness… a difficult task made easier through the loving care and support of the Women’s Caregiver Support Group. Here, Dona’s shares her story of God’s faithfulness and the loving care of the women in this group as they support one another in the caregiving journey.
---------------------------
My Journey
My husband Phil was diagnosed with Parkinson’s disease in 2006. Although it was a shock to both of us, we lived in denial for several years until we could no longer ignore the changes that were happening. Phil had physical changes: weakness, unsteadiness, dizziness, fainting spells, uncontrolled blood pressure, tremors, difficulty walking, and muscle spasms. He also had cognitive changes: unable to plan or make decisions (loss of executive function), unable to remember things he had learned and had known most of his life, slow at processing information, and eventually hallucinations. These changes made Phil fearful and insecure. He had feelings of self-doubt, paranoia, confusion, and sadness.
Parkinson’s is a neurodegenerative disease for which there is no cure. It is a chronic, progressive illness that causes a gradual decline in abilities and a steady worsening of symptoms. In Parkinson’s disease, the production of the neurotransmitter dopamine is diminished. This is an important chemical messenger in the brain that has many functions. It's involved in reward, motivation, memory, attention, and regulating body movements. As the production of dopamine declines, there is a bigger and bigger disconnect between the brain and the muscles. For most people, this condition is a long, winding road with its own unique set of twists and turns.
Over the years of our journey, we found that we were constantly readjusting our expectations. Early on, he became worried that I would leave him. Fear and insecurity were some of his early responses to the disease. My early response was to get frustrated with Phil because I could not accept that he couldn’t do what he had always done. What I thought I knew as true, was no longer true of my husband. His personality changed and my confidence lessened. Both of us had a hard time adjusting our expectations.
Caregiving and care receiving is a partnership. One gives and one receives. As time goes on and the disease progresses, the giver gives more as the receiver needs more. The giver begins to feel like she is living her life for two. As I watched Phil’s decline and realized how hard it was for him and that he had no control over these changes, I became more understanding and compassionate. I tried to lift his spirits by reminding him (and myself) of all the wonderful, happy times we had experienced in our life. It was a heavy lift. We were both grieving.
Early in 2017, I started attending the New Covenant Bible Church Caregivers Support Group. I found it to be such an encouragement. Here was a group of women with one big thing in common: they all were (or had been) caregivers. And they intimately understood each other in that role. Each lady was walking the caregiver’s path; some had traveled that path longer than others, but each one had so much to contribute. I sat riveted as each woman told her story. I was desperate for first-hand information from women who were living the same difficult role I was living. I learned so much from each of them. I also found acceptance and understanding of my frustrations and fears.
In a caregiver’s life, things can change so quickly. At each meeting, we give updates on our situations. Many of us report little change from the last meeting, but often one or two women are going through a crisis situation. Those who have already been through that crisis can give encouragement and helpful insight on how to handle it. For the rest of us, we listen, learn and pray.
When I first began attending the Caregivers meetings, I felt like Phil and I were doing just fine and I could handle everything myself. I realize now I was in denial. It was easier to think that we would not have some of the difficult problems that others had. Then I started to have crisis situations. I craved the support the group gave me. These wonderful women had creative ways to address or solve some of their problems and I was listening.
Stress is a way of life for caregivers. We experience stress from the day-to-day burden of taking care of our loved one, or from crises that come up like hallucinations or a fall, or from seeing our loved one deteriorate, or from the sadness of the situation. Chronic stress is physically draining and unhealthy. But science has proven that humans are best at dealing with stress when they have social support. Social buffering, as it is called, can make us feel loved, cared for and less alone. This is what our caregiver’s support group has done for me.
My precious, brilliant, loving husband died in April of 2020. He had been in a care center for nearly nine months after falling down our stairs and breaking his hip. It was a very hard year to be in a care center on lockdown because of the pandemic. Phil and all the other residents suffered from deprivation of their loved one’s touch and nearness. The care center staff worked valiantly to meet the physical and emotional needs of their residents. I’m forever grateful to them.
I thank God that He is our refuge and strength, an ever-present help when we are in trouble. I’m so thankful for each loving heart in our caregiver’s group who prayed for me and helped me through. God laid this ministry on Karen Zach’s heart 12 years ago when she was caring for her husband Gene who was nearing the end of his journey with Parkinson’s disease. She has been our fearless leader and prayer warrior. She opens our meetings with a devotional and closes them with prayer, and she sprinkles in a little humor. Laughing is something a caregiver needs. Dixie Estrem, Karen’s co-leader, is equally loyal to this ministry.
I’m so thankful for these two leaders and for all the women in our group who have come together to support each other, to share their heavy burdens, and to lighten each other’s load.
Two favorite verses say it all.
Two are better than one, because they have a good return for their labor:
If either of them falls down, one can help the other up.
But pity anyone who falls and has no one to help them up….
A cord of three strands is not quickly broken. Ecclesiastes 4:9-10, 12b
When you pass through the waters, I will be with you;
And when you pass through the rivers, they will not sweep over you.
When you walk through the fire, you will not be burned; the flames will not set you ablaze.
For I am the LORD your God, the Holy One of Israel, your Savior. Isaiah 43:2-3
----------------------
The Women’s Caregivers Support Group meets on the 1st and 3rd Thursday of the month from 2:00-3:30 PM in the New Covenant Bible Church library. Anyone who is on or has been on the caregiving journey is welcome to attend. Contact care@ncbc.church