Finding The Words

Support for Alzheimer’s patients and caregivers

Sunset 3-2484. That was my phone number when I was a kid growing up in Hollywood.

Part of the joy of having Alzheimer’s disorder is that old memories come tumbling back, insinuating themselves into your current psyche.

Wait a minute. Did I say, “Part of the joy of having Alzheimer’s”? I really didn’t mean “joy.” I should have said, “Part of living with Alzheimer’s,” since this last year has not been exactly a joy for me.

I was diagnosed with Alzheimer’s in 2016. However, looking back, I know my memory started falling apart way before that. You know, those simple lapses we blame on aging. But hang on — there’s a vast difference between memory loss due to aging and Alzheimer’s, which is a form of dementia.

For me, this condition has meant frustration at not being able to complete a sentence because I cannot find the words, along with a general withdrawal from the life I enjoyed before.

It also has meant writing notes to remind myself of what I wanted to do that day. For a person whose life has been dictated by deadlines, it’s been a tough reach.

In fact, it angers me, which is another aspect of Alzheimer’s. I get angry at simple things that used to roll off my back. Just trying to get an idea across drives me crazy sometimes. I end up not talking. To anybody. As a matter of course, I refuse dinner invites or socializing in general, especially in large groups that are noisy.

Truthfully, in the past year I have withdrawn into myself. For someone who used to be widely involved in Santa Fe life, this is a big change.

There are days when I feel I don’t have Alzheimer’s. I can talk and write, and everything moves along easily. On other days, I have a hard time completing a sentence. If someone interrupts me when I’m speaking, I completely lose my train of thought and can’t even start over. It’s just lost.

Leslie Rich, my caregiver and spouse, had to drag me to a meeting of the Memory Club. Don’t tell her, but I’m glad she did. It was a place where I was able to meet others with various forms of dementia-related disorders and their caregivers.

I was finally in a place where I was able to ask questions and get answers about what my life might be like living with Alzheimer’s. Before I started going to the Memory Club, I honestly thought that one morning I’d wake up and wouldn’t be able to remember my own name. But it isn’t like that at all. The progression of this disorder is thankfully a slow one.

There are various forms of dementia, including Parkinson’s, Lewy body, vascular, and frontotemporal; Alzheimer’s is the most common.

Alzheimer’s support groups in Santa Fe

Santa Fe has two free Alzheimer’s support groups: the Alzheimer’s Café and the Memory Club.

The Alzheimer’s Café, headed by Jytte Lokvig, meets in at the Children’s Museum from 2 to 4 p.m. on the second Wednesday of the month.

“An important part of the Alzheimer’s Café is that no one truly understands your experience of living with this disorder except

another person living with dementia as well,” said Lokvig, who has a PhD in management of Alzheimer’s caregiving from California Pacific University in Escondido and has written five books on Alzheimer’s. “We do not define ourselves as a support group but rather a place to be to celebrate each other,” she said.

“At the Alzheimer’s Café, we focus on helping people with this disorder live a joyful life as best they can. We focus on people’s abilities rather than their disabilities brought on by dementia. In fact, we leave the dementia at the door and focus on just being together and exploring our strong points.”

Lokvig paused to take a deep breath: “About half of the people over the age of 85 in the United States live with Alzheimer’s dementia. Of this number, I think there are at least 40,000 people in New Mexico living with Alzheimer’s.”

The Memory Club is led by David Davis, executive director of the Memory Care Alliance for Northern New Mexico, and Eileen Joyce, a certified coach and grief recovery specialist. The Memory Club is sponsored by Comfort Keepers, which runs an in-home service for caregivers.

“For caregivers, this may be the most demanding period of their life,” Davis said. “Talking with people in similar circumstances can make a huge difference.”

Davis started taking care of his mother when she was 75, when she first started showing symptoms of Alzheimer’s. “I took care of my mother for 11 years. I was lucky we lived in a community where they had resources. At first, a lot of my caregiving was by trial and error,” Davis said. “You have to become a creative problem solver. When you care for someone, it needs to be physically and emotionally. You not only need a plan for them, but you need one for yourself as well.”

Davis explained that the suicide rate among caregivers is high. “We’re talking about survival. . . . This is why I formed the Memory Care Alliance,” Davis said. “I didn’t know all the answers, but I had experienced a lot of the problems.”

He continued, “Caregiving comes in a lot of different forms. You have to have a plan. An education. That’s why I now do what I do to provide that. . . . I wanted to provide a place that taught planning, education, support and resources. Those are the four things provided by the Memory Care Alliance.”

Davis said that he sees a growing number of people with memory care issues. “All the statistics are based on diagnoses from a physician,” he said. “But we live in a rural state. Most of the people that I see have no diagnosis at all. The level of need has fast exceeded the resources available.”

He said that Alzheimer’s receives a little more than $1 billion a year from the National Institutes of Health. “But we are living longer and have not solved this problem,” he warned. “How can we come up with a solution while research is still arguing about the cause of Alzheimer’s?”

The Memory Club caretaker support group meets at 2 p.m. on the first three Fridays of the month at Comfort Keepers, located at 1303 Luisa St. A special meeting for caregivers and their clients takes place from 2 to 3:30 p.m. on the fourth Friday of the month at the Universal Unitarian Church of Santa Fe, 107 W. Barcelona Road.