by Elizabeth Shean
Mom had something important to tell me, but she was struggling to speak. Dementia has affected her ability to find the right words most of the time, and her sentences have become drawn out, interspersed with long pauses while she waits for language to get organized in her brain. Yet today it wasn’t just the search for words that was tripping Mom up. No, she was on the verge of tears. Too choked up to speak.I looked at her, dressed in pajamas and sitting on the edge of the bed, and saw as if for the first time how small and frail she had become. As a kid, Mom’s father nicknamed her “Carrie” because she had the fire of Carrie Nation on a temperance campaign. But today she looked like a fragile child, and my heart went out to her.“I think...I have started the...final decline,” she eventually said. “I can’t think of any other...reason why...I feel so tired lately, why I...want to sleep all the time, why...I move so slowly.”I sat down next to Mom and put my arm around her shoulders. I kissed her hair.“I’m sorry, Mom,” I said. “I don’t know what to say.”She smiled at me and hugged me back. “You don’t have to...say...anything,” she said. “Just knowing you’re here...makes it OK.”The next day I exchanged emails with my sister, Jan, about what Mom had told me. Despite the fact Jan lives nearly a thousand miles away, in Colorado, she provides a lot of caregiving support. She talks to Mom on the phone multiple times a day. Each year she uses some of her precious paid time off to fly here to Houston for a week and care for Mom so I can take a vacation of my own. And she corresponds with me frequently by email to offer love, support and insight.I sent her an email to tell her what Mom had said about “the final decline.” I told Jan I felt at a loss to provide any meaningful support to Mom. What do you say to someone who can see death approaching?Jan replied, “I have noticed Mom seems much more emotional when we talk lately, and it suddenly hit me: maybe she is grieving. Maybe she is mourning the impending end of her life.”It seemed so obvious, in retrospect. Of course Mom is grieving. Perhaps I had not realized this because I am, in fact, still mired in grief, myself, after losing my husband suddenly in April. Jan and I exchanged a few more emails about how we could best cope with this situation. How can we help Mom find meaning and closure during the coming weeks or months, which may be her last ones on Earth? How can we comfort her as she comes to accept her mortality? How can we, ourselves, work through our own anticipatory grief over losing our mother?We did not come up with definitive answers to these questions, but we did resolve to keep trying to help Mom as much as possible. And maybe just recognizing the issue will enable us to cope better. Despite having no answers yet, I am grateful to have a supportive sister on the caregiving team, as well as the continued support of Mom’s Home Instead® CAREGiverSM, Anita. I know together we can all get through the difficult days ahead.
Your story really touched my heart. My aunts were victims of Dementia. To have a loved one who struggles to recap on lost memories, survive in a whole new world like a new born baby not knowing the new worldand depending on that one person to trust is a very difficult task to face. Yourself and others who have a loved one and they are the caregivers, I want to commend you on doing what you do or have done right now as a caregiver for your loved one. God bless you and keep you strong.
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