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Local families open up about caring for loved ones with Alzheimer's

The Standard Times - 6/11/2017

June 11--Sitting on the back porch in Fairhaven, Gian Rudlinger, 84, asked what the date was shortly after his daughter Maria Walker, 48, had already told him it was Tuesday, May 16.

On the sunny, warm afternoon, Walker had brought a tray of coffee and British wafers to her father after they both had lunch, explaining to him that it was "very Swedish." Afternoon snack time is a tradition in Sweden where she had grown up and he had once lived. She called him "papa" and they'd switch from speaking English to Swedish.

Walker is one of thousands of caregivers in the state bearing the emotional and financial burdens of caring for a loved one with Alzheimer's Disease and dementia.

In 2016, there were 333,000 unpaid caregivers such as friends or family, excluding professional caregivers, caring for loved ones in Massachusetts, according to the Alzheimer's Association.

Walker is also a part of about one quarter of dementia caregivers nationwide known as the "sandwich generation" meaning they care for both a parent and children under 18. Walker and husband John have two sons: William, 9 1/2 and Oliver, 8 1/2.

"I was not prepared for how hard it would be to find respite," Walker said.

As the Walker family prepares for a summer vacation to San Diego -- where John is from and where they lived prior to moving to Fairhaven in August 2015 -- they are struggling to find care for Rudlinger.

Early on, it seemed clear that a nursing home was not an option due to financial constraints, Walker said.

The vacation will be three weeks long for the boys to stay with John's parents. John will fly out with them and then Maria will come later, so Rudlinger is left alone as short as possible, for four days. The family will get to spend two days and four nights together, Maria said. "That's kind of our life," she said.

Daily life

On the afternoon Walker served her dad the snack, Walker noticed him through a kitchen window coming in the house to use the bathroom. She went to assist him at a commode by the end of his bed that is usually covered up.

In public, it's not so easy, she said. Most places have gender bathrooms. Being unable to go to the men's room, she sends Ruglinger in and hopes for the best, she said.

On Mondays, Wednesdays and Saturdays, with financial assistance from Coastline Elderly Services, Rudlinger goes to a social day health care program at Brandon Woods. This gives Maria, John, William and Oliver 6 1/2 hours on Saturdays to do activities as a family.

Maria visited six nursing homes within what she considered to be a reasonable driving distance. She told nursing home administration that Rudlinger has a swallowing condition, has Alzheimer's and is legally blind due to having glaucoma and cataracts.

Alzheimer's is the most common type of memory loss, the second being vascular dementia, according to the Alzheimer's Association. Over 120,000 people in Massachusetts, compared to an estimated 5.5 million in the U.S., have Alzheimer's this year, according to data from the association.

Approximately 200,000 individuals under the age of 65 in the U.S. have younger-onset Alzheimer's. It is estimated 5.3 million with Alzheimer's in the U.S. are 65 and older, according to the Alzheimer's Association.

Walker found that anything more than room and food -- such as laundry or needing help to dinner -- would be an added cost. In addition, some nursing homes don't take people for less than two weeks or two months.

"We just have to figure out how my dad can be best taken care of," Maria said.

John works at a nonprofit in Rhode Island and when he comes home from work some evenings, Maria heads off to CVS to work as a cashier. She works about 15 to 20 hours on evenings and weekends in addition to about five hours a week doing paper work for a certified public accountant. The family is unable to pay for full-time care, leaving Maria to be the full-time caregiver.

Maria earned a bachelor's degree in English and a bachelor's degree in Occupational Therapy in Sweden. She does not yet have an OT license in the U.S. because she missed the window to take the national test before a master's degree was required.

She plans to begin to get her master's in the fall through a new web-based Swedish program that is in English, she said, noting she can get free tuition because she has citizenship in Sweden.

Young Alzheimer's

Lois Thompson, 58, also of Fairhaven, will likely have to take her husband Joseph Thompson, 59, to her daughter's graduation for her bachelor's in psychology from Southern University in Virginia Beach, Virginia.

As a result of five major strokes, her husband was diagnosed with Alzheimer's and is legally blind, she said. He is also diabetic.

She usually visits her daughter, 25, for a week. The Veterans Administration was able to help her out last year, but now a person has to be 70 percent disabled to qualify, according to Thompson.

"He won't remember any of that," she said about the graduation. Her daughter is working on finding someone to care for him during the commencement, but otherwise Thompson will have to take him.

Thompson said Joe is in the early stage of the disease, but "his mind is set in the 1980s" and he often talks about the Navy, where he served for 20 years.

"It's tough because he's so young," she said.

Thompson works five days a week driving kids with special needs to school.

"That's my release to just get out of the house," she said, because she gets to be around people and socialize.

After telling her friends Joe has Alzheimer's, they stopped calling, Thompson said.

"The disease can be very isolating," said Jennifer Hoadley, the Southeastern Massachusetts regional manager of the Massachusetts and New Hampshire chapter of the Alzheimer's Association.

By telling friends or family about a loved one's diagnosis, people find out who their real friends are, she said.

"They didn't know how to help, so they just didn't," she said. However, people often want to help, she added.

A traditional stigma

Hoadley advises caregivers to have a list of things that are needed if someone asks what they can do.

According to Hoadley, "People don't understand Alzheimer's Disease" and there is a stigma around it.

"There's not necessarily a look to the disease. Anybody could have it," she said.

She said as the stigma starts to break down, she doesn't think as many people will be afraid to get the diagnosis.

According to the association, only 45 percent of people with Alzheimer's or their caregivers report being told of their diagnosis by their doctor, compared to more than 90 percent of people with the four most common cancers who report being told of their diagnosis. For example, some people may be reluctant to go to the doctors to get a diagnosis, Hoadley said.

"I come home from work and I never know what I'm going to be facing," Thompson said.

"Every day is a different day," she said. "Sometimes his bad days last longer."

On a good day, he's alert, attentive and talkative and on a bad day, he can't find his clothes, relying on Thompson for help.

"I try not to help him as much," she said. "You have to keep that mind working."

Thompson doesn't want Joe to completely rely on her, but she knows it'll happen eventually.

"They've never seen my real dad," Walker said about her kids. "They've only seen him in decline."

Her dad was spontaneous, liked to travel and didn't fear change, she said.

"He would just invent the day every morning," she said. "He would just make sure every day was a good day."

A man who used to call now faraway friends and send birthday cards no longer does. Walker said he doesn't ask about his friends anymore.

"The initiative was gone," she said. "It was hard. It took a lot of his personality away."

Still, she said there is a lot of positive in her life and being a caregiver is not the only thing she does, but an added responsibility.

"You stand up and you keep moving," she said.

"I can't be too depressed about about the caregiving part because I have kids and need to be their mom," she said.

Support

Support groups can be a huge help for caregivers, since no one truly understands what a caregiver goes through besides a fellow caregiver, Hoadley said.

"Often people call this the long goodbye," she said, talking about the disease. "They grieve the losses every day while the person is still living."

She doesn't recommend it as a job people do by themselves.

"There are many cases where the caregiver passes away before the person with the disease," she said.

She said caregivers need to have a plan in place to make sure they're also taken care of along with the person they're caring for.

Community services are improving, but there's not sufficient resources to keep a family member at home, said Jane Sullivan, an elder law attorney who is a member of the Southeastern Massachusetts Alzheimer's Partnership.

"There isn't the same amount of money available to pay for home care," she said. "That's just kind of the way long term care has developed in the country."

For an individual who qualifies financially, having $2,000 or less in the bank, Medicaid can help pay for the nursing home which is at least $125 per day, Sullivan said.

"Individuals and caregivers may prefer to keep someone at home, but it can be logistically difficult to do that" if they have to work, for instance, or don't have the resources to keep them at home, she said.

One of the most important legal issues in terms of documents is having a health care proxy in place, or a document that is signed off saying who can make the health care decisions when one is rendered incapable, Sullivan said. "From a legal perspective, that's always the starting point," she said.

Patricia Geggatt-Midurski is the Wellness Center and Memory Loss program coordinator at Community Nurse Home Care in Fairhaven.

"People feel they don't have that value because they don't believe they're contributing to society," she said of those with Alzheimer's, noting there can be a social isolation for them, too.

As the person with the disease has less stress, the caregiver tends to have more. There is more stress in the beginning for the person with Alzheimer's when they lose their ability to drive, independence and more. As for the caregiver, "They're really always on alert."

She said caregivers don't take care of themselves. They usually don't eat well and get few hours of sleep.

"So many caregivers put themselves behind their loved one," she said.

Like Rudlinger, Joe Thompson attends the social day health care program at Brandon Woods through Coastline Elderly Services three days per week. Coastline pays for most of the cost while the veteran services in Fairhaven picks up the rest.

His insurance comes from being retired from the Navy. Thompson said the VA pays for a CNA to shower Joe twice a week. Veteran services in Fairhaven covers medical expenses, like co-pays from doctor's visits, she said.

On multiple occasions, Joe has wandered off when Thompson was at work, leaving her to change the locks in the house. On one occasion, he was picked up by a stranger who was also a veteran, Thompson said.

"It was scary not knowing where he was," she said.

Hoadley said 60 percent of people with Alzheimer's will wander at some point.

Most of the time, he sleeps, Thompson said.

The two have been married for some 30 years. Lois said Joe was mellow when they got married, but has now been agitated. She explained "that's part of the disease."

Walker said her family watched a documentary on the changes an Alzheimer's brain goes through, she said. She looked up pictures of the brain on Google, pointing to a typical developed brain and a smaller Alzheimer's brain with less tissue.

"Of course there is no logic anymore," she said in reference to some of the behaviors people with Alzheimer's may have. "How could there be logic in this?"

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(c)2017 The Standard-Times, New Bedford, Mass.

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