Do I know you?

My mother is suffering from Alzheimer’s. My father passed away two months ago and I tried to take her in, but the stress was too much for me and my family. Now she’s in a nursing home and I can’t stop feeling guilty. I find myself avoiding visiting her because oftentimes she doesn’t remember who I am. How do I cope with this living loss?

“This is a situation I think so many of us can relate to,” began Martha Hodges, minister at Unitarian Universalist Community Church, and she’s right: as many as 5.2 million people are living with Alzheimer’s disease in the United States.

Each guest at this week’s Higher Ground round-table discussion had a personal story to tell.

“This person has suffered a lot of losses,” Hodges continued. “She lost her father, and in a very real sense, she’s lost her mother. She needs to honor that grieving process, not try to rush it or chastise herself for feeling what she’s feeling.”

Even though Hodges is a minister, she struggled with the dilemma everyone faces when living with someone with dementia: How to reconcile this new person, whitewashed of memory, with the loved one you once knew?

The answer, Hodges suggested, is to “honor that person both as she was and as she is now.”

Gloria Clemens-White, pastor of Kyles Temple African Methodist Episcopalian Church in Oak Park, shared her challenges during the mental deterioration of a very close aunt.

Despite knowing that “it’s not healthy to have the guilt,” Clemens-White said she knows “what it is to feel guilty.

“I don’t visit very much because she isn’t the same. It hurts.”

“I made my aunt a promise,” Clemens-White continued. “I said I would never put her in a home. I should’ve never made that promise. Because I couldn’t keep it.”

Eli Hughes, associate pastor at Capitol Free Will Baptist Church, made the same promise to his parents—and kept it.

“The biggest problem is the guilt she’s feeling,” he said. “If it were me in this situation, I would go get my mother and bring her home. I’ll tell you what: Convalescent homes are expensive. You can spend the same money to hire someone to come in four days a week and help care for your elderly loved one.

“We’re supposed to care for our elderly loved ones. They’re not supposed to die alone somewhere. … I’ve been to a lot of convalescent homes and some of ’em I can’t stand the stench when I walk through the door. It’s the last place in the world I’d put my mom and stepfather, who are now living with us. My stepfather’s 85 years old and he’s very, very challenged. But we treat him like a person. And we all know that his time is probably short, but just love ’em. That’s what you gotta do.”

But Hodges disagreed. “I think loving someone is not enough,” he responded. “I also had a mother with dementia. I also did not want her to be in a nursing home. But you also have a right to live your life. And if the person you’re caring for is out of control—if you can’t get a home health aid to stay with her because she’s so violent and belligerent—there are other circumstances when you can’t keep the person at home. And to layer guilt onto the grief that a child feels when they have to put a parent in a nursing home, I don’t think that’s helpful.”

The last one to weigh in was Lama Yeshe Jinpa, a Buddhist teacher at the Universal Compassion Center and a psychotherapist.

“I plan on getting Alzheimer’s,” he quipped.

He continued on a more serious note, “Buddha Dharma is really interested in waking up to things as they are. “A big piece of that is ‘Who are we?’ Usually we identify ourselves with our ego state, our ability to control and do and remember. So when those ego functions dissolve, the question is, ‘Is that the end of the person as we know it, or is there something else?’

“I like to ask people, ‘Who am I talking to right now?’ And that’s a question that I like to ask myself. Who is talking right now? My ego state, my identity, the one on the driver’s license? Is it a soul? Consciousness? I think these issues are brought into sharp focus when we’re working with someone with an illness, particularly dementia, and it’s a challenge to one’s faith. My mom has dementia and Alzheimer’s, so this is familiar territory. She’s in Denver, so I don’t get to visit much. But it helps me to think there’s something in there I’m talking to.

“What we think that is,” he concluded, “is up for discussion.”