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Those working on the front lines of the fight against Alzheimer's and dementia see an out-of-control truck veering toward the American population. And they're concerned that too few people seem to notice it.

There are now 5.4 million Americans with Alzheimer's and estimates say that will double by the year 2050. Closer to home, there were about 20,000 diagnosed dementia patients in South Central Wisconsin in 2010, and that will jump by about 4,000 by 2025.

It's not just the people with dementia who are cause for concern. There's the question of who is going to take care of them.

Tracy Earll, executive officer of the Alzheimer's Association of South Central Wisconsin, said it takes an average of three people to care for one patient each day, "And it's a 36-hour-a-day job."

There are now 15 million unpaid caregivers, mostly family members, and twice that number will be needed by 2050 when baby boomers are in their last years. Equally ominous is dwindling government support to help families provide care.

"This situation could cripple the Medicare system," Earll said. "The drugs (to treat Alzheimer's) are not very good at all. If there's no cure in 20 years this will be extremely, impossibly expensive."

So while money for research is being chased, others are working to help the unpaid caregivers cope with the job they didn't sign up for, and are usually poorly equipped to handle. One such source is the Alzheimer's & Dementia Alliance of Wisconsin, which provides education and support from the beginning to the end of what they call "the journey."

DIAGNOSING DEMENTIA

The first step, getting a diagnosis, is often slow. Minor odd incidents gradually increase.

Pat Wilson and her brothers initially thought that grief over their mother's death was causing their father's uncharacteristic behavior. He was a retired Small Business Administration executive and a "clothes horse who always looked good." But they noticed that sometimes he wasn't changing his clothes, shaving or combing his hair. He'd come to her workplace to ask her what he'd had for breakfast, though she hadn't been with him.

Another source of confusion for family members is that while Alzheimer's is the most common form of dementia, there are several other types and many people have more than one kind.

"People with a type of dementia called 'lewy body' can have hallucinations, like seeing children or animals playing outside when they're not there," said Mary Reines, program director for the Alliance. "That can really throw caregivers off.

"People with Alzheimer's and dementia view themselves in a different place and time. They might get up at 4 a.m. because they think they have to go to work or take care of children. They look in the mirror and see a stranger because they think of themselves as younger."

Many caregivers say the afflicted person has a different personality.

"But what they're seeing is the person's unfiltered raw personality," Reines said. "They lose impulse control and social graces. We all think things we don't say out loud, but when certain parts of the brain are damaged, they come out."

Also perplexing is the fact that on some days people have lucid moments, but then retreat to a mental fog. "Caregivers start to wonder if the person is deliberately being mean to them," she said. "You can read every book in the world on the subject, but every case is different and every one is complicated."

PLANNING FOR CARE

Wilson, who took care of her dad for most of the eight years of his illness, said caregivers need to take stock of the patient's strengths and weaknesses. In the early stages of her father's decline, he only needed to be cued to eat and take his medicines.

At that time, guardianship of Wilson's older brother, who has severe developmental disabilities, was transferred to her. And her responsibilities mounted steadily.

"I gave up a lot of social things: movies, dinners, art classes, skiing. I knew I should stay connected, but it was hard to do anything."

Wilson also has an older brother in Madison and two younger brothers, one living in Platteville and the other in the Twin Cities. Family dynamics changed.

The brother in Madison was not active in caring for their father. The younger ones, in contrast, set up a schedule to give Wilson a break: twice a month they took turns relieving her, arriving at their dad's house at 5 p.m. Friday and staying until Monday morning.

"We tried to divide responsibilities so it was not totally on me," Wilson said. "It required a lot of planning. Who can participate? Some can do a lot. Some can do a few things. And some can do nothing. At first, I was angry that I had a brother in Madison who wouldn't come over. But I came to terms with that because you can't change other people."

Near the end of her father's life, he was moved to a care facility near her brother in the Twin Cities. "I knew my brother would be a better advocate in that situation," Wilson said. "I didn't think I would visit enough because I have trouble spending time in places like that."

Wilson credits part of her family's survival to a shared sense of humor and a family that had always been close.

"I found a gallon of milk in the washing machine, and my father's favorite shoes in a plastic bread bag in the freezer," she recalled. "You need to laugh about these things, even the hard things. We weren't laughing at dad; we were laughing at the situation. And then dad would start laughing. He picked up on our moods. If I felt down and anxious, he'd feel it too. Some people grow up without the habit of laughing, and they are the ones that often go into deep depressions when they go through this."

Reines said families need to have candid conversations about what people can do and what they can't do as soon as they realize something is awry. "The caretaker of a spouse is losing their confidante and partner," Reines said. "Little by little they have to take on the roles the other person performed. They have to learn a different set of skills.

"When siblings are caregivers, some are good in the early and middle stages of the disease. Some people are better at the end," she said. "This is a long journey and people shouldn't put their lives on hold. Those who do often feel lost when it's over. They think 'that was my role, and now I don't have a role.'"

'I HATE THIS, IT'S AWFUL'

Patricia Lipp-Strayer, 53, lives in Missouri and each month comes to Madison to see her 95-year-old mom, Adeline Lipp, in the memory care unit at Coventry Village.

"After every visit I'm sorry I left her in Wisconsin," Lipp-Strayer said. "I don't want to be the person she sees the least."

After three years of living with Lipp-Strayer and her husband, surgeries left her mother unable to climb stairs. Because most other members of the family live in Wisconsin, some in Madison, it was decided that she needed to be in a care facility here.

"I was at a really stressed point after living with her for so long and being the only person taking care of her," Lipp-Strayer said. "I was at a weak moment and I caved. I was going crazy, standing in my closet to make phone calls so I wouldn't put any more stress on my husband. My head tells me this is the right thing for mom, but my heart tells me it's not. I hate this, it's awful."

Lipp-Strayer currently has power of attorney and handles medical appointments, orders supplies and deals with the care facility.

When she visits, she takes her mom on short road trips. Olbrich Gardens, the zoo, out to lunch. "She loves those trips. She wants to get out of there. I'm the only one who takes her out because everyone else is scared to because she's so frail. She used to smoke and she can't (in the care facility) so she asks me for a cigarette."

There's more to worry about. Her mother, who was widowed in 1977 and worked until age 91 selling moccasins in Northern Wisconsin, is running out of money. The cost of living in the memory care unit is $5,400 a month.

"If she's destitute and has to move to a facility that Medicare would pay for, another move would be hard on her," Lipp-Strayer said. "No one in the family has that kind of money, so that's a constant nightmare for me."

Her mother's condition also has her wondering what the future holds for her.

"This is hereditary, and I'm terrified," she said. "Fundraising for Alzheimer's has become the cause of my life. And it's not entirely unselfish."

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(c)2012 The Wisconsin State Journal (Madison, Wis.)  

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