- Associated Press - Friday, May 20, 2016

COLUMBIA, Mo. (AP) - Denny Fox still keeps his wife’s voicemail greeting on his home phone even though it brings one of his friends nearly to tears every time he hears it.

Fox’s wife, Cindy Fox, hasn’t spoken in 10 months. She used to teach high school and college English classes until four years ago when she began to forget the language that was so dear to her.

Sixty-eight-year-old Cindy Fox was diagnosed with primary progressive aphasia, a brain condition in which language capabilities become impaired, which then evolved into Alzheimer’s. The doctors said it would get worse, and there were no treatments or medication that could prevent or stall it.

The Columbia Missourian (https://bit.ly/1VRNEZD ) reports that after being a teacher for over 30 years, her biggest loss at the time was the ability to teach and influence students with language.

As time went by, Cindy Fox was only able to write her husband three-word notes. The first two words were always “I’ll be.” The third would be something like shower, lunch, bed or bathroom.

“That was enough for a while to give me a hint of what she wanted,” Denny Fox said. “But her spelling deteriorated, and after that she would lead me to different places in the house.”

Now, Denny Fox does almost everything for his wife. He bathes her, helps her in the bathroom, dresses her, and cooks and cleans the house.

According to an estimate by the Centers for Disease Control and Prevention, more than 5.3 million Americans are living with Alzheimer’s in the U.S. Eighty percent of those with the disease receive care in their homes from someone like Denny Fox - an ordinary person, compelled by love and duty to take the role of caregiver.

It’s often thankless work, but caregivers say planning ahead, seeking support from others in the same position and finding time away from the person with Alzheimer’s are the key to making it work.

Denny Fox’s advice to early caregivers is to be willing to adjust their thinking and lifestyle and not be afraid to ask for help and suggestions.

“People always say necessity is the mother of invention,” Denny Fox said. “You have certain problems, and there’s no book, so you just have to find a way to do it and get through it.”

Alzheimer’s is the sixth leading cause of death in the U.S., and of the top 10 causes, it is the only one that cannot be prevented, cured or slowed, according to the National Alzheimer’s Association.

The Alzheimer’s Association is the dominant health organization for Alzheimer’s support and research by providing care and support for people affected by Alzheimer’s, specifically caregivers.

Joetta Coen is an associate director of the Alzheimer’s Association Greater Missouri Chapter in Columbia and also leads the men’s support group on the third Thursday of the month.

Sometimes, she said, caregivers don’t know what they’re getting into when they decide to take care of a family member with Alzheimer’s, especially the children of people with the disease. Caregivers often don’t realize how devastating the disease will be for them as well as their loved one.

According to Alzheimer’s Association statistics, nearly half of care contributors cut back on their own expenses to pay for the care of a family member or friend with Alzheimer’s. Caregivers are 28 percent more likely to eat less or go hungry, and one in five caregivers cut back on their own doctor visits due to their caregiver responsibilities.

And 74 percent of caregivers reported that they are “somewhat” to “very” concerned about maintaining their health since becoming a caregiver, according to the Alzheimer’s Association.

That’s why the organization puts a big emphasis on support groups.

“People can come to support groups and express their stresses, ask questions and know that they’re not alone,” Coen said. “There’s this brotherhood or sisterhood.”

After Cindy Fox was diagnosed, Denny Fox, 68, decided to retire from selling insurance to take care of her. He said he has always been a patient person, but coaching basketball for 37 years before selling insurance also improved his patience and persistence with his wife.

“It’s kind of tough when there’s not going to be any improvement, but you just keep doing the things you have to do,” Denny Fox said.

His wife is a gentle person as she shuffles around the house, but she has become a little more stubborn when he tries to get her onto the toilet or into the shower. He said the scariest thing is not knowing if she’s in pain because she can’t communicate with him.

Cindy Fox has choked from food obstructions in her airway twice since being diagnosed. Both times Denny Fox performed the Heimlich maneuver, chest compression and mouth-to-mouth to get her breathing again while waiting for emergency personnel.

He has made adjustments. Like finding a way to secure the TV remote after his wife lost three of them. Or modifying the freezer door so it swings back by itself if she leaves it open. He has fixed padlocks to the doors in the house so she can’t get into food cabinets or into the garage where she has sometimes gone to get into the car.

Occasionally, he wishes he could have a day off. But paying for an additional caregiver costs $13 an hour, and that adds up. He can only afford to pay a caregiver when he goes to support group meetings. Those are a priority.

Denny Fox looked into nursing homes, which were about $4,500 a month, plus $1,000 more for memory care patients. He feels like he’s paying himself that amount to stay home.

“There might be a time or two a month when I wish that she would be in a nursing home,” Denny Fox said. “But I think I give her more personal care and more immediate attention. My intention is to keep her home as long as I possibly can.”

Denny Fox admitted he gets lonely sometimes, despite phone calls from family and friends. He’s grateful to have his wife’s company, whether they can have a conversation or not, but he misses being able to tell her about things he sees or hears throughout the day.

Denny Fox said at this point, there is very little going on in his wife’s brain. He suspects she only understands he’s someone important in her life.

“I don’t think she understands a spousal relationship,” he said. “It’s still a loving relationship, but it’s not like it used to be at all.”

Fifty-five-year-old Amelia Cottle and 56-year-old Brian Cottle have been very vocal about their experience with the disease. They don’t want to be known as the “Alzheimer’s people,” but they try to share their story if it helps make a difference in the community.

Brian Cottle was diagnosed in 2012 with early onset Alzheimer’s disease.

“I had a suspicion, but to hear it from a neurologist is a tough one,” Amelia Cottle said. “Everything changes.”

Brian Cottle retired shortly after diagnosis, and Amelia Cottle quit working in January 2014 when her husband could no longer be left alone. His memory, speech, sight and other cognitive abilities have deteriorated rapidly over the past four years.

She made changes to their house to accommodate her husband. She put bright tape on door handles and the toilet so he can see them better. She adapted recipes to allow him to eat with more dignity. Smaller pieces. Foods that can be eaten with a spork.

Amelia Cottle also began attending support groups immediately after the diagnosis. Now she moderates the women’s support group and helps coordinate a breakfast for Alzheimer’s patients and their caregiving spouses once a month.

She’s noticed that sometimes caregivers become isolated in their belief that their experience is singular. The breakfast and support groups remind caregivers that they’re not alone.

“There’s a recognition that every day these people are dealing with the same thing with the same phase, earlier or later,” Amelia Cottle said. “You love them because you understand their battle.”

Amelia Cottle said she was honored when asked to moderate the women’s support group at the Alzheimer’s Association in Columbia. Although she is younger than many people in the group, she draws on her research ability, background in clinical work and her own experiences in helping other caregivers.

Amelia Cottle’s advice to new Alzheimer’s caregivers is to “get all of your ducks in a row.” This includes putting together a medical plan and community of trustworthy doctors, as well as getting all legal documents lined up. She also said it’s important to get it done early because the more the person with Alzheimer’s can be involved in the transitioning, the better.

“The hardest part of caregiving is watching someone you love descending and descending and descending,” Amelia Cottle said. “With illnesses, a person is either going to get better, or they’re going to get worse. With this one, there’s never any hope.”

The second hardest part of caregiving for her husband is the mental struggle. As the main caregiver for her husband, she often wonders if she is making the right decisions, evaluates everything he does and at times questions her sanity. Amelia Cottle said it’s exhausting.

To combat her mental struggle, Amelia Cottle researches as much as she can about the disease. It helps her make decisions and adapt to the “increased need and the decreased cognitive ability.”

The up side is what she’s learned about herself. She’s been amazed to find out how much patience she possesses.

But she misses interactions with people, like going to lunch with friends and sharing interesting observations with her husband.

“Sometimes I feel alone,” Amelia Cottle said. “I know I’m not, but it’s that mental state where your whole day is spent constantly watching or listening to make sure you don’t need to help with something.”

She takes a break from the stress of caregiving by reading, which allows her to keep an eye on her husband at the same time. Caregiver support groups are also an important way to get away for a few hours.

Amelia Cottle enjoys the calm of being in the same room as her husband and often touches his hand or plays with his ponytail. She said part of her time is spent storing up memories because she knows she’ll miss him after the disease runs its course.

“This is life, and this is what we do,” Amelia Cottle said. “You can only control the things you can.”

For 82-year-old Pat Etienne, who was diagnosed with mild cognitive impairment, or early stage Alzheimer’s, in 2011, that sense of control comes from staying active in the community and her spiritual center. Especially when she’d rather stay home.

Although she lives with her oldest daughter, Etienne has remained very independent because the progression of the disease has been fairly slow.

Etienne sought a diagnosis after noticing that some of the questions on an Alzheimer’s test administered to her brother were a challenge for her. She knew she was in trouble when her daughters began saying, “Mom, we told you that,” because she had found herself saying that to her brother.

A neurologist confirmed that she had early stage Alzheimer’s. Etienne tried three different recommended medications, but since they wouldn’t stall the disease and had some side effects, she decided not to take them.

Etienne has long-term care insurance as well as three “outgoing and caring daughters.” They’ve discussed their mother’s future and recognize she will require more intensive care and supervision in the years to come.

The daughters already help Etienne with big decisions because Alzheimer’s has affected her judgment. They also watch for signs of change, whether it’s in her driving or cognitive behaviors.

Aisha Kareem, Etienne’s daughter and housemate, said she expects to assume increased responsibility for her mom’s care as the disease progresses.

Kareem does most of the cooking, keeps her mother focused on a particular task when she forgets and reminds her to use her calendar. As a nurse, Kareem is also attentive to her mother’s health and accompanies her to appointments.

Etienne respects the responsibility her daughters feel for her but is also attentive to her own caregiving.

Although she would rather do passive things like sitting at home, she recognizes the importance of “staying in the game” by being active and maintaining contacts and relationships.

Etienne currently serves as a National Early Stage Advisor for the National Alzheimer’s Association along with 11 other people. She said she is “used extensively as an advocate … and a spokesperson for the mid-Missouri Alzheimer’s Association chapter.”

She is very involved in the spiritual center, Unity of Columbia, and said the people there have supported her since the diagnosis. They value her experience and ask her to volunteer in the office as well as make sure she shows up for meetings and events.

“They’ve supported in such a way that has never allowed me to feel sorry for myself,” Etienne said. “I still have to show up. They won’t let me say no.”

She has learned to tell people she meets that she may not remember them later but encourages them to say hello and remind her who they are and how they met. She doesn’t want people to be standoffish.

She also plays Scrabble and Words with Friends “religiously,” which helps her chart her memory loss.

Although there are many things Etienne has forgotten how to do, she said she hasn’t forgotten how to ask for help.

“If I want to be a participant in my own life for as long as possible, then I have to recognize that I have to ask people for what I want or need,” Etienne said. “The hardest thing is to acknowledge it’s a different game with different rules. My curse is that I’m aware enough to know I’m not aware.”

Reaching a breaking point

Many Alzheimer’s patients are not aware of their disease, or their awareness fades over time, and some still live alone. For this reason, Joel Shenker, an MU Health Care neurologist, said the demand for caregivers is greater than the supply. They’re needed to accompany Alzheimer’s patients to appointments, verify medications have been taken correctly and watch a patient’s movements around the house.

“Only a caregiver can be the glue that holds that together because a patient can’t do that anymore,” Shenker said.

“But, in a sense, it’s unhealthy to be a caregiver,” he said.

He cited a guideline from the Accreditation Council for Graduate Medical Education that limits resident physicians, who are usually young and healthy, to a maximum of 80 hours of work a week because their health can suffer if that amount is exceeded. The average work time for caregivers of Alzheimer’s, or other related dementias, is 80 hours a week, and usually they’re much older, he said.

Some Alzheimer’s caregivers have to make decisions they weren’t used to making before and can’t be as productive as they wish to be, which can cause depression. Sometimes caregivers, most often spouses, are unhealthy from the beginning.

When the needs of the patient are physically and emotionally more than a caregiver can provide, nursing homes and assisted living facilities should come into play, he said.

Caregivers often tell Shenker they feel it’s selfish not to care for a loved one with Alzheimer’s. But Shenker said they need to recognize the consequences for themselves and the patient.

The Alzheimer’s Association emphasizes the importance of caregiver’ health. Taking breaks, keeping up with personal medical needs and finding support from family, friends and other caregivers can help maintain effective caregiving.

“It’s never selfish to take care of yourself,” Coen said. “As long as you feel good, you’re able to provide the care. If you don’t feel good physically, emotionally and mentally, you’re shortchanging your loved one.”


Information from: Columbia Missourian, https://www.columbiamissourian.com

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