Shared story: My journey as a long-distance caregiver, Part 1
Today’s Shared Story comes from Cindy Gossman, Venice, Florida. Her mother, Jinnie Helm, lives at The Christian Village at Mason (Ohio).
Mom was never officially diagnosed with Alzheimer’s. We began noticing minor age-related memory lapses in 2014. But in early 2015, she experienced four of the “big five” life crises within the span of two months.
• She lost her beloved husband of nearly 63 years (my dad, Ken);
• gave up her car;
• moved (at age 85, to live alone for the first time in her life);
• and had to leave their church home.
All of this caused the first significant downturn in her mental health.
For about three years, she was able to function on her own, first in an independent apartment in a retirement community ten minutes from our home in Florida. We’d call each other or exchange emails every day, I’d visit or take her shopping or on outings several times a week. But her severe grief over losing Dad, coupled with long-term clinical depression, seemed insurmountable.
Moving to Ohio
Mom was adamant that she wanted to move back to Ohio, where she was born and raised, and where she and Dad had spent more than 40 years in life and ministry with their church in Mason. Fred and I spent much time in prayer and discussion with my brother, Mike, and his wife, Heidi; also several sessions with Mom making “pro and con” lists. She was convinced that going “home” to Mason would be the answer.
Jinnie celebrated her 90th birthday, February 24, 2020, in her new Ohio home with son, Mike, and daughter, Cindy.
In October 2016, Jinnie moved to Mason Christian Village and experienced a mental boost for a short period of time. She did establish a routine in her apartment, making breakfast in her room, going to the dining room for the “main meal” at lunch, sitting with her regular group of tablemates, and attending chapel services. She enjoyed singing with the Ambassadors choir and playing her piano occasionally. She did go on a couple of the outings such as bus trips to the Cincinnati Symphony Orchestra, and a friend or two occasionally took her out to lunch.
Grief and depression
But her grief and depression, coupled with her lifelong feeling of worthlessness, began to cause more significant mental declines. She withdrew more and more and did not want to venture to any outings. I’d remind her almost daily about meals, chapel services, and even simply seeing her friends in the hallway as she walked to her mailbox. Nothing clicked. I arranged rides for her to go to the church’s Evergreen (senior citizens) events, but she didn’t want to attempt it.
She’d reached the point where she remembered just enough to realize how much she was forgetting. In daily phone conversations, she’d express her distress and frustration: “I can’t remember anything anymore. This is AWFUL! I HATE this!”
My issues
I’ve struggled with four major issues as a long-distance caregiver.
• Guilt: Should we have had Mom live with us after Dad died? Should I do (fill in the blank)? What shouldn’t I have done? I should have been more proactive about (X). Here I am enjoying life in Florida, able to sing in the choir and help in other ministries, while Mom is languishing by herself. And on and on. Every time I heard Mom so distressed, I’d feel a stab of guilt.
Cindy and her mom enjoyed Skyline Chili during an Ohio visit in April 2021.
• Decision-making: How do we decide when Mom is no longer capable of making decisions for herself? What if she can no longer function in her apartment? When and how do we decide what to do? I’ll write more about that in Part 2 of this story.
• Extreme sadness coupled with frustration: If only I could convince Mom to (fill in the blank), she’d have a better quality of life. In daily phone conversations, she’d express her frustration at realizing how much was slipping away from her. I’d try to redirect the talk and be as positive and encouraging as I could, but I’d hang up the phone feeling sad, depressed, and emotionally drained. It took me a long time to realize that these feelings are a symptom of grief. More on that in Part 2, also.
Peace
But thanks be to God, He has given me such peace. Through much prayer and many discussions with family and wise Christian friends, God has helped me understand that Jinnie is where she needs to be. She’s safe and getting excellent care, which I’m neither trained nor equipped to provide.
Countless times during difficult phone calls he has given me the words to say—and the calm, cheerful voice to say them. I’ve sensed God’s Spirit working in me more than I ever have before. He has provided mental and emotional rest when I most need it. I end almost every phone call reminding Mom that even though we’re not with her, God is always with her, always loves her, and is always taking care of her. I’m reminding myself at the same time, always with thanks for God’s presence and provision.
Next week: Facing my own depression and grief.