Shared story: My journey as a long-distance caregiver, Part 2
Today’s post is the second of two from Cindy Gossman, Venice, Florida.
Cindy is a long-distance caregiver for her mother, Jinnie Helm, who lives at
The Christian Village at Mason (Ohio).
Be sure and read her Part 1 if you missed it last week.
When we lose a loved one to death, we experience the year of “firsts”—first birthday, anniversary, Easter, Thanksgiving, and Christmas—without the loved one. The mourner can anticipate those dates. We went through those along with Jinnie the year after Dad died.
Random “firsts,” ongoing grief
But in my journey with Mom, “firsts” have come unexpectedly, at random times, over a four- or five-year period. The first time she didn’t remember who Dad was. The first time (of MANY) she asked where her mother was (she had died in 1979). I struggled to answer out-of-the-blue questions: “Tell me about your Dad, I don’t think I know him.” “I haven’t seen my mother in a long time, where is she?” Or, “My mother died? Why didn’t anybody tell me?” “You’re my daughter?” “I was married? When?” “Who are you?”
This was our last family picture, a selfie taken at Dad and Mom’s mobile home in Florida, mid-January 2015.
I soon realized I was experiencing ongoing grief over the loss of both my parents—Dad’s physical death and Mom’s mental death. The Mom I’d known and loved all my life was rapidly losing parts of herself, and I was having to reinvent my relationship with her at each significant downturn.
I also felt myself grieving for Mom’s own losses, even though she barely recognized them. Her independence. Her ability to sew. Her rapid loss of vocabulary resulting in her inability to read more than a phrase or two. The fact that taking her out to lunch was more frightening and stressful than enjoyable for her.
Serious “first,” move to memory care
Jinnie’s cognitive functions declined severely in the last year or so she was in her assisted living apartment. She could no longer remember to take her medications, so the nurses had to administer them. She’d often either forget to eat or just not want to leave her room. She couldn’t remember how to use her computer or work the TV remote.
Then, the “first” that necessitated her move to memory care. One Friday evening the head nurse called to say that the staff had determined she needed to move. A unit had become available and they were prepared to move her immediately. I’d asked for an evaluation which was scheduled the following Monday, so we asked them to hold the unit until then. We began to pray for wisdom about how to make such a decision.
May 15, 2022: We brought Skyline to Mom’s room and ate with her.
Although Mom was never officially diagnosed with Alzheimer’s, a neuroscientist/dementia specialist physician whom we’d met at church confirmed our suspicions when we described Mom’s symptoms to him that Sunday and asked for his advice. His first question was, “Has she wandered yet?” I said no. He said, “It’s not a question of IF she’ll have to move, but WHEN.”
That very afternoon, I received a call from the nurse: Jinnie was in their office, very upset, and needed to talk to me. They’d found her out in the driveway with some packed bags, waiting for her ride to “move her back to Ohio.” God had given us a definitive answer to our prayers.
Season of “firsts,” continued decline
Jinnie was moved into the memory care unit the next day, early February 2020. She had less than a month to get adjusted to a new routine and set of caregivers before the COVID shutdown happened. I never knew what to expect from the daily phone calls. One day she’d be excited and happy about her new place. The next day (or even two hours later) she’d call me in tears wondering where she was, why she was there, and who had made that decision. No amount of signage or verbal reminders seemed to help.
We were able to be with her each day during the last week of February, to celebrate her 90th birthday. But soon came the COVID lockdowns, followed by a fall in May 2020 resulting in a broken hip, surgery, and six weeks in the rehab center. Neither I nor my brother were allowed to be with her at any point.
When she finally returned to her regular room, she’d forgotten everything about it. All we could do was call her every day and try to explain what had happened and where she was. Before the COVID vaccines, we were allowed to see Mom in person only once more in July 2020, but only outside, masked, and no touching allowed.
Helpful counsel, growing faith
In late 2020 I realized I was depressed. Oh, I’d vent to Fred after each phone call, and he’s always been a patient listener, but I knew I needed more help. I began meeting regularly with a friend serving with Stephen Ministries in early 2021. She has been a wonderful listener, supporter, and encourager, having gone through this same situation with her own mother. I encourage every caregiver to find a wise Christian friend to share with. Mine has helped me tremendously.
And God has always provided his wisdom and strength. In countless difficult phone calls I sensed the Holy Spirit helping me with patience, the energy to repeat the same conversation eight times in two minutes, a calm and cheerful voice (even when exhausted), and the words I could use to redirect the conversation from negative to positive.
I’ve never been good at “thinking fast on my feet.” Because of so much unpredictability, I couldn’t write a script ahead of time. But thank God, he has provided what I needed at just the right moment. My faith and my dependence on him have grown. And even on the worst days, I feel his peace.