Fading with Grace: A True Story of Alzheimer’s Caregiving

Alzheimer’s is a cruel disease. When it affects someone you love, you don’t lose them all at once; you lose them in increments. They’re present in body, but the essence of who they are slowly fades, like a photograph left in the sun.

My mother, Gigi Cotton, has been living with Alzheimer’s disease and dementia for almost 20 years. Caring for her is an act of love I manage each and every day – from 2,000 miles away.?

I consider myself my mom’s care coordinator, and I call her twice daily, but since she lives in Los Angeles and I live in Indianapolis, I can’t visit her every day. I’m grateful that she can still live at home thanks to the excellent caregivers at Senior Helpers.

If all goes well and God says the same, we’ll celebrate Mom’s 93rd birthday on November 22. She’s had a glorious life, and she continues to enrich my life, even though she’s a different version of the Gigi I once knew. I’m so grateful that I’ve been able to care for her the same way she cared for me. My whole family has enjoyed our time with her. She’s still teaching us how to live with dignity and grace.

In honor of my mom, and to recognize National Family Caregiver Month, I’d like to share a few anecdotes about our experience with Alzheimer’s. I hope our story, and the list of tips below, will offer insight and inspiration.

A delayed diagnosis

I first clearly and unmistakably noticed my mom’s dementia when she was 79 years old. When I took her to a neurologist for a cognitive ability test, it confirmed enough of a decline to put her on the Alzheimer’s spectrum. At the time, it occurred to me that I’d overlooked some symptoms that had appeared years earlier: moodiness and anxiety (especially in the evening), problems paying bills and balancing her checkbook, as well as general forgetfulness. Since early diagnosis and treatment are crucial, I’d encourage anyone with a loved one who displays similar symptoms to ask their doctor about testing right away. Knowing what you’re facing can make a world of difference.

Troubling signs, loving ultimatums

After Mom’s diagnosis, she spent a lot of time alone, and I encouraged her to visit a senior center near her home for a couple of days a week. It was a great place staffed by caring, compassionate professionals – caregivers, dietitians, nurses, and social workers – and it was convenient, too: A bus would pick Mom up at 8 a.m. and bring her home at 2 p.m. But after I took Mom for a visit, she refused to go. “That place is for old people!” she said. Nothing could convince her. Finally, I had to threaten to move her to Indianapolis if she continued to say “no.” The threat worked. After her first actual visit, she loved the senior center. She met new friends, joined the Red Hat Society, and actually looked forward to her days there.

Not long after that, we faced another setback. Mom still cooked her own breakfast and dinner, and, on visits to her house, I noticed scorched pots soaking in the sink. That was a pivotal point in my realization that things had shifted. Independence is key to everyone and their self-esteem, and my mom had always been independent. But I had to point out that she risked burning down the house. I told her I planned to turn off the stove.

“You can’t do that!” she said. “This is my house.”

"You can’t stay here if you’re going to keep using the stove,” I said.

“How will I heat up my tea?” she said. “How will I cook my oatmeal?”

“You can do it in the microwave,” I said.

“How will I fry fish?” she said.

She hadn’t fried fish in 25 years. I said, “If you want fried fish, we’ll get you a Filet-O-Fish sandwich.”?

She got me on that one, but we still cut off the stove.

Becoming an advocate

Medication can make a big difference for Alzheimer’s patients. My mom’s longtime GP started her on Aricept (Donepezil), which worked well for years, but when further mental decline suggested she needed something more, I did some research and learned about combination therapy using Namenda (Memantine). When her GP said “no” to that idea, I asked a neurologist for a second opinion. The neurologist was all for it. So were Mom’s caregivers at the senior center – they’d seen how it had helped others. I felt conflicted, but I went back to Mom’s GP and said: “You need to get on board, or you’re going to lose her as a patient.” He quickly changed his mind. Years later, I learned that the doctor had told Mom’s caregivers I’d done a good job advocating for her, and he wished his own kids would do the same.?

Embracing the fade

As memory fades, so does your loved one’s personality. Yet the person you love is still there, and so are flashes of brilliance. Sometimes I’ll create light conflict to check my mom’s logic and reasoning. One time, she tested me back. After she said something outlandish, I said, “Are you serious?” She laughed and said, “I’m joking with you.” For a moment, her sense of humor came shining through.??

Care for everyone

I know that home care is expensive, and not everyone can afford it. In fact, 83% of the people who care for older adults are unpaid family members or friends. Those caregivers face much greater challenges than we have. That’s especially true in communities of color. Health disparities can put people at greater risk for developing Alzheimer’s and limit options for care. I’m hopeful that, by building awareness of the issues and prioritizing health equity, we can create positive solutions for everyone.?

Rod’s Caregiving Tips

A sampling of ideas from my experience caring for my mom:

Get a diagnosis. Although it’s extremely difficult to definitively diagnose dementia, a clear diagnosis can help you align with your loved one on a course of care. Visit an internist or neurologist. Ask about cognitive testing, PET scans, and biomarker testing.

Decide on a care plan together. This is best done with delicate and artful negotiation.

Tend to teeth. If your loved one has dentures and you can afford to upgrade to implants, do so as soon as you can. Nutrition is important, and having teeth is crucial.

Get your affairs in order. That includes financial and medical documents such as wills, trusts, power of attorney, and medical directives.

Prepare the house. Make home safe for elders just as you would for toddlers. Install grab bars, shower seats, high-seat toilets, hospital beds, and ramps, and stay current on repairs.

Call and visit often. I call my mom twice each and every day, and I visit often – including surprise visits! When I’m away, other family members stop by to see my mom and take care of minor house repairs.

Honor caregivers. Form active, trusting relationships with all your loved one’s doctors and caregivers.?

Keep them at home. When people have issues with short-term memory, the last thing you want to do is take them away from a place they remember. If you can afford it, keep your loved one in a familiar space for as long as you can.

Let them be right. Alzheimer’s patients may not process words, but they can process emotions. Don’t argue. Use a calm voice and try to flip the script.?

Get second opinions. Double-check and diplomatically challenge professional opinions when you disagree.

This content is provided for educational and informational purposes only and does not constitute providing medical advice or professional services. The information provided should not be used for diagnosing or treating a health problem or disease, and those seeking personal medical advice should consult with a licensed physician. Always seek the advice of your doctor or another qualified health provider regarding a medical condition.