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Patricio Reyes M.D., F.A.N.N.
Director, Traumatic Brain Injury, Alzheimer's Disease & Cognitive Disorders Clinics; Phoenix, AZ; Chief Medical Officer, Retired NFL Players Association

St. Joseph's Hospital and Medical Center


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Patricio Reyes M.D.
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Sunday, November 20, 2016


Alzheimer's, dementia caregivers face a daily struggle to support loved ones

After Kathleen Ivey’s husband started asking her “where are we going” every half of a block for multiple miles, she decided to take a new approach.

“At one point he said, ‘Where are we going?’ and I said, ‘Crazy,’” Ivey remembered.

Ivey, a Holladay resident, has been caregiving for Ben, her husband who has Alzheimer’s, for 11 years. She said she has decided to put a positive spin on the constant, repetitive questioning that had become very normal in her life.

“It was something so silly and off the wall to say,” she said. “It was half true anyway.”

After the fear, anger and emotions of her husband’s diagnosis, she said finding a way to laugh has been an important coping mechanism for dealing with the daily stress of caring for someone with Alzheimer’s.

November is National Alzheimer’s Disease Awareness Month and National Family Caregivers Month. This has given a unique opportunity to focus on a group of people that rarely get the spotlight in conjunction with the disease — caregivers.

Ivey's husband was diagnosed with Alzheimer’s when he was 62. Ben was a professional musician with the Utah Symphony for 12 years before he decided to become a broker. He was active in the community and volunteered frequently, Ivey said.

When he was diagnosed, she said she went through so many emotions and Ben experienced a lot of denial. After years of caregiving, Ivey said she has come to accept it and tries to make the most of it.

“You realize at certain points that your life is not like you had planned,” she said. “It’s not like it was and it’s never going back there. So you have to do a mind adjustment so you accept, OK, this is what we are doing now and work within those parameters.”

Up until recently, when Ben was moved to a senior living center, Ivey had cared for him in their home. While he wasn't violent and didn't wander, she said she mostly just needed to be there for her husband.

“There’s a lot of mental stress that goes along with that, of being with someone and not being with someone, with not having a companion, with not having anyone you can talk in your house,” Ivey said.

“It’s widowhood without being widowed because you’ve lost the person you fell in love with,” she added.

She also took on a lot of new jobs like yard work and house care, which were things that Ben used to take care of in their division of responsibilities.

“It’s just a combination of things,” she said. “Taken individually as a job it's not so bad but it's all the things that feed into it.”

Coping with the stress
For several years, Ivey would take a weeklong trip with friends or family to relax from the day-to-day stress and routine of everything. But for several years in a row, she said her plans never came together.

“Then I started feeling like I had been put into a microwave oven,” she said. “On the outside I looked the same, just like food would, but on the inside every molecule in my body was just going like crazy.”

That’s when Ivey said she knew she needed to get away. She decided to take a trip and leave her husband in respite for awhile, which helped her.

In addition to taking trips, Ivey blogs about her experiences to give herself an outlet and help other caregivers not feel so alone. Her blog, aGoodOne, highlights some of the funny moments she’s experienced while also talking about difficult topics.

She also makes sure to continue doing her volunteer work, visiting friends and treating herself to good meals and chocolate, which she calls gastronomic hugs.

“It’s a way of saying to yourself you still matter,” Ivey said. “I’m still worthwhile enough to deserve a decent meal.”

Ivey said some of the smallest things can be the biggest help to a caregiver. She suggests phone calls or emails to show support, offering to stay with the person they are caring for or dropping by with dinner.

“Don’t ignore it,” she said. “Go up to the person and say flat out, I’m so sorry you’ve got to deal with this, what can I do to help? Don’t let it just be an empty help.”

Most importantly, Ivey said she appreciates a hug, too.

“Our husbands don’t (hug us) anymore,” she said. “He remembered how to hug for awhile, but he really doesn’t anymore.”

Ronnie Daniels, executive director for Alzheimer’s Association of Utah, said they suggest friends, family and neighbors talk to caregivers about what they can do to help. Each person has different needs and wants different help.

“I would certainly want to make sure I went in and met with them and let them know I was there,” he said. “A lot of times they don’t need help taking care of that other person, but they could use help getting groceries or doing yard work or cleaning or laundry.”

Daniels said studies show more than 30 percent of caregivers will die before the person they are caring for does. Other studies show that 59 percent of caregivers rated their stress as high or very high.

There are a lot of health problems that crop up with caregivers because they push themselves to the point of exhaustion before asking for help. And the exhaustion isn’t always physical.

“There’s a lot of anxiety of what the future will hold and what another day dealing with this will be like,” he said.

To help offset the stress of caregiving, the Alzheimer’s Association offers caregiver consultations, resources for financial and end of life planning, online resources, a 24/7 helpline and support groups.

Support groups
Provo resident Judy Seegmiller is a big advocate for support groups. She runs five across the county where she listens to people’s concerns, successes and issues while sharing her own experience. Her husband was diagnosed with early onset Alzheimer’s at 52 and died three years later.

Seegmiller, who often speaks at Brigham Young University and conferences, said she likes to compare caregiving to a swimming duck.

“When you look at a duck floating on a body of water and they just look so serene like there’s not a thing going on in their little world, but underneath their little feet are flapping like crazy,” she said.

There’s the day-to-day responsibilities, isolation and concern for their loved one. That’s why she encourages every Alzheimer’s or dementia caregivers to find a support group.

“The biggest thing about a support group is for each person to go around and say what’s going on in their world and what can we do to help you today,” Seegmiller said.

Seegmiller's husband, Craig, was diagnosed after she went through chemotherapy for cancer and had E. coli. At first she just thought his issues, the early signs of Alzheimer's, were the stress of their business and her health.

After being diagnosed, she watched her husband change as the disease got a stronger hold on him.

“We’ve been burying Craig a little bit everyday for three years," she said. "You bury them a little bit each day from the time they’re diagnosed.”

Seegmiller has been through it all and that's why she remains so active in support groups. She wrote a book titled “Life with Big Al” about her experiences as a caregiver to help others understand what to expect and how she handled it.

She also gives out her cellphone number to people who might need her help talking through issues or getting advice and always answers calls from people.

“That’s why I know I’m still here,” she said. “I figure whoever I can help and however I can help, that’s why that guy upstairs has me here.”

Ivey said her support group at the Mount Olympus Senior Center in Holladay has helped her significantly.

Every third Thursday, she and a group of eight or so other caregivers find their seats around a round table and talk about the things that they are going through.

They bring up issues they’re having and ask advice. Each member is given their own space to talk and in return the other group members nod attentively or ask engaging questions.

When one woman shared how people often say her husband, who has a mild cognitive impairment, looks and acts fine, Ivey asks her if that bothers her and offers her experiences.

Valerie Mercer, who lives in Salt Lake City, said Ivey encouraged her to attend a support group when her husband was diagnosed with Alzheimer’s. The two had volunteered together and Ivey talked about how helpful it was to interact with other caregivers. Mercer agreed.

“It really the sharing (that helps),” Mercer said. “You don’t have to explain everything and everyone nods their head. That for me is a great affirmation — just that physical nodding or a smile.”

However, she said she wasn’t as open to attending a support group in the beginning.

“In the very beginning, it’s kind of like if you say it out loud it’s real,” Mercer said. “If I join a support group it’s because I can’t handle it.”

New expectations

Mercer said that her life and expectations for the future changed when her husband, Dan, was diagnosed in 2014.

“Your plans for your stage of life and imaginations for this stage of life — the book has been slammed shut on them,” she said. “You deal with a lot of disappointment. I'm not the kind of person to dwell. I’m a 'when one door closes another opens' person and I’m just looking for those opening.”

One of the bright sides has been the support group and the people it’s introduced her too, she said.

Mercer said her caregiving is much less physical than it is cerebral at this point. She answers a steady stream of questions and tries to keep her husband engaged. So while she doesn’t have to deal with the physical concerns, like incontinence or falling, she said there are other unique challenges.

“I can’t be myself within my own four walls,” she said.

Her husband, Dan, doesn’t remember she is his wife, often thinking she is his employee. Sometimes it’s easier to play along with it instead of constantly upsetting him.

Mercer said she reminds herself to avoid hurrying and that her husband is probably very scared a lot of the time, too. She also tries to focus on kindness.

Story Source: The above story is based on materials provided by DAILYHERALD
Note: Materials may be edited for content and length