Behavior

Woman with Dementia Gets Lots of Support

Robert and Brenda Lugar

Robert and Brenda Lugar

In the 3 1/2 years since Brenda Lugar was diagnosed with dementia due to Lewy body disease, she has found great comfort in the people who want to make her life a little easier.

This support takes many forms. At church on Sunday mornings, Shirley always reminds Lugar of her name. When Lugar is writing an email, she knows it’s okay to text her friend, Michele, or her sister-in-law, Janet, for help finding the right word. Lugar’s husband of 43 years, Robert Lugar, recently bought her a special board for Christmas so she has a place to work on her jigsaw puzzles – and he insisted she open it early and start enjoying it now.

“Just that little thing – it meant a lot,” she said in a recent interview.

It’s common for people who are grappling with the painful reality of a dementia diagnosis to deny their condition or hide it from others. But not Brenda. Asking for the support she needs – and getting it – is “soul cleansing,” she said.

Lugar, who is 62, didn’t arrive at this place immediately. When a neurologist at Duke University Medical Center diagnosed her, her initial reaction was denial. “I said, ‘Oh you can cure me.’ He said, ‘I can’t cure you but I can slow it,’ ” she said. “When he said that, I knew that wasn’t good. I kind of shut down.”

Lewy body disease is a condition in which abnormal protein deposits in the brain can cause dementia. For Lugar, disclosing her disease gives her an odd sense of relief – it’s an explanation to others for her memory loss, her intermittent hallucinations about animals, and her uneven performance at work. “I had to tell people, because I wasn’t the same person,” she said.

She even shared her condition with a store clerk to explain her fumbling with the credit card reader. “If I tell them [and] if they have any decency in them, they’ll treat me better,” she said.

Barbara Matchar, director of the Duke Dementia Family Support Program, which Lugar participates in, said that people like Lugar “who are open about their diagnosis often feel relieved.”

Lugar was diagnosed in 2017 after she noticed frightening things happening to her at work. At the time, she held a demanding job as a program assistant for the Duke-Johnson & Johnson Nurse Leadership Program. As an integral part of the fellowship program, she kept it on track and processed the applications to the program.

Suddenly, busy work days were being punctuated by days in which she didn’t know what she was supposed to be doing. She would stare out her office window for hours. To make up for lost time, she’d work until midnight at home. “I would always strive for excellence, and I thought, ‘I’ve got to figure this out or I’m going to lose my job,’ ” said Lugar, who went on disability after leaving Duke.

But the same woman who skillfully juggled that demanding job has retained her problem-solving talents. If she gets lost at Walmart, she calls her husband and tells him what aisle she’s in. If she can’t recall whether she brushed her teeth, she feels the bristles to see if they’re wet. She has no real sense of time, so she sets a timer when she hops in the shower.

People with dementia have more than their share of heartbreaks. Lugar and her son are very close, but she senses he has had a hard time accepting that she has Lewy body disease. And she dreaded telling her parents and extended family about it, because they would worry.

One of her greatest comforts is her support group at Duke. They share their common experiences in regular meetings, which have moved to Zoom during the pandemic. The group members feel free to say whatever they want and are reassured when the others nod in recognition of what the speaker is going through.

“You can tell when we hit something, and we all get it,” Lugar said.

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5 Responses to Woman with Dementia Gets Lots of Support

  1. MB says:

    This was just a wonderful story. Someone close to me is exhibiting signs of dementia, but she has rejected seeing a neurologist that her doctor (and I) have suggested.

    I just want to see if there is anything we can do to slow it down or help her to manage it better. But she gets down when I mention it to her. I think she is not willing to see the truth.

    If anyone has any suggestions on that, I am all ears. I am going to be someone who helps her get through whatever this is, and provides for her. It seems to me that I have some right to know how it can be best treated or what can be done so she can better manage what might be coming. But I want her to approach this in the best way she can and right now, it seems to be denial. That just doesn’t help anyone.

    – A concerned friend

  2. Cheryl Conley says:

    It is common for people to deny there is a problem. It can be difficult, however, to know if she is denying because she is in denial (a protective defense that can be addressed, but need not be stripped away precipitously) or if she is denying because the damage done to the brain has robbed her of insight, so she cannot see it. If she is in denial, she may come around to seeing the problem with appropriate support. If she lacks insight because of damage to her brain, you will need to deal with that without her being able to share in the recognition of needed changes. If you have an agency that offers dementia care coaching or support for caregivers, that may help you and her.

  3. Barbara Matchar, MSW, MHA, Duke Dementia Family Support Program says:

    As with most issues related to dementia, there is no one right way to address this concern. Others facing similar situations sometimes find that asking their loved one living with memory changes to see a doctor as a personal favor works. Some families or friends enlist an ally their loved one respects — a different family member or friend, a religious leader, an attorney, etc. Sometimes nothing works and you may have to wait until there is a critical incident to get an evaluation. While this is never what anyone wants, you are not alone. In the meantime, continue to offer understanding and support, as well as a watchful eye.
    The Alzheimer’s Association has a free 24/7 helpline, professionally staffed, that you can call for further advice. They can also refer you to a support group for first-hand advice about how others address this challenge. The helpline number is (800) 272-3900.

  4. MB says:

    Thanks very much to all who have responded to this article. I have used this advice to guide me in convincing a close friend to discuss her condition with a professional. MB

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