Nov. 21--Lisa Kiick swears she can still do the same things she was capable of just five years ago. She can go on those 5-mile runs, work a full day, cook a meal and have time to pay the bills after.
"If I'm alone..." she said, but suddenly stops. There's a blank, exhausted, frustrated stare that comes across her face. "I try not to get frustrated."
Her husband, Ed Kiick, has seen that look plenty of times over the past five years. It still doesn't make sense.
"I look at her and I see the same person," he said.
Lisa was diagnosed with Younger-Onset Alzheimer's Disease, a progressive mental deterioration disorder that causes memory loss, among other serious health issues. She was diagnosed three years ago, when she was 52.
There were warning signs at least two years before that, her husband said.
"I could pick up on the subtle things, like she would ask me a question I just answered a few seconds ago," he said. "I would go to the doctor's and say, 'You might want to check her out for dementia.' I said that for two years before they go, 'Ed, you were right.'"
Dawn Hoffman remembers the days of crying in her car before work, or during laundry, or in the break room at Emmitsburg Elementary school where she teaches first grade.
There has been a lot of crying over the last 10 years.
Her 85-year-old mother, Jean Heiges, started forgetting some of the little things, like where Hoffman's youngest daughter worked in Gettysburg. In 2005, Heiges started showing signs of Alzheimer's Disease. Now it's 2015, and Heiges doesn't even know her daughter's name on most days.
"I struggled a lot in the beginning," she said. "That was the hardest thing to accept, your mom just not knowing who you are."
There are few warning signs for Alzheimer's. Some studies suggest that there are genetic and environmental factors that cause the disease, while others dispel that notion. What all clinics and doctors can agree on is that Alzheimer's cannot be prevented or cured. When you have it, it's there forever and gets progressively worse.
"You don't get a tumor like cancer, or if your tooth hurts and that represents a toothache, that's the thing," Ed Kiick said. "There are no warning signs, it just happens."
The rate of the disease is going to continue to climb over the next 35 years, according to a July report presented by the Lewin Group at the annual Alzheimer's Association International Conference.
Today, more than five million people nationwide 65 and older have the neurological disorder. By 2050, a projected 28 million people will have the disease, according to the report.
In Pennsylvania, 50,000 more people expected to have the disease by 2025, according to the Alzheimer's Association. According to the state's department of aging, 280,000 are currently living with Alzheimer's.
The projected rise in the disease is a concern for Nicole Hummel, a memory support social worker at Homewood at Plum Creek in Hanover. There aren't enough caregivers now to assist with Alzheimer's patients, she said.
"Too many of the positions are part-time or just as-needed, which discourages people from getting into the field," she said. "People also might not be enamored with the work. It can be tough."
Being a caregiver to an Alzheimer's patient is more than just giving pills and an occasional visit, Hummel said. In some cases, caregivers have to help a patient deal with extreme mood swings, moments of frustrations and confusion. Caregivers also need to have an eye for detail, like making sure a stove is turned off after cooking, she said.
"You don't get a tumor like cancer, or if your tooth hurts and that represents a toothache, that's the thing. There are no warning signs, it just happens." -- Ed Kiick
For Hoffman, who helped care for her mother for around six years before she went to a nursing home, her biggest task was hygiene, she said.
"My dad went into a rehab facility around 2010, so my mom was trying to live on her own with the disease. She would go awhile without changing her clothes and she would say, 'Well I like this sweater,'" Hoffman said. "She wasn't interested in bathing anymore. I would come in and try and check on her, but I was the only girl in the family so I was the only one helping her with personal hygiene."
In 2012, Hoffman and her three brothers made the decision to permanently move their mom to an assisted living facility. It was not an easy decision to make, especially because the family was having a hard time accepting the inevitable, said Dave Heiges, one of the brothers.
"My family, I don't think we did a great job of preparing for our parents aging and the options that might have been available," he said. "You just don't talk about it. I think it's important to have those discussions, I did wish we had talked a little bit about it as opposed to suddenly being put in that situation."
Assisted living facilities aren't the cheapest, Hoffman said. Along with the difficulties of making a decision to move her mom, the family had to handle the financial stresses of the medical costs that insurance didn't cover.
"We had to take care of selling the home. We grew up in that home; my dad built that home. That was tough to do on top of trying to accept this horrible disease," Hoffman said. "They took everything."
The national tab for caring for individuals with Alzheimer's disease is estimated at $100 billion annually, according to the Alzheimer's Association. It's estimated that the disease costs U.S. businesses more than $60 billion a year, stemming from lost productivity and absenteeism by primary caregivers, and insurance costs.
"I think they added an additional $300 million into the budget for Alzheimer's research, but really that's a drop in the bucket. We can appreciate it, but boy that's tough," Ed Kiick said.
The financial stress was nothing compared to emotional burden, Hoffman said. There's nothing that can compare to the family becoming a stranger to the person that raised you, she said.
"It's the not knowing that's kind of difficult, what does she understand, what doesn't she understand. I think we're still trying to come to grips with it," Dave Heiges said.
Ed and Lisa are in a different situation. The couple sleeps in the same bed, eats breakfast at the same table and, during the warmer months, plants flowers together in the garden next to their Gettysburg home.
It's a tedious process switching between husband and caregiver, Ed Kiick said. He has to make sure his wife doesn't forget to take her medication and has to drive her around. At the same time, he wants to be a loving and supporting husband.
"I don't see myself as my caregiver to her or her caregiver to me," he said. "I see us as husband and wife. We take care of each other equally."
That doesn't mean there aren't frustrating exchanges throughout the day, he said.
"She might ask me, for example, if I want a ham sandwich. Then a few seconds later she'll say, 'What did I come in here for again?' and I'll go, 'Are you kidding me?'" he said.
It's in those moments that Ed Kiick, and other caregivers and significant others affected by the disease, need someone to turn to, he said.
"I'll feel horrible after I say those things. I mean, I know she can't help it," he said.
Ed Kiick can usually count on his family to lend him a listening ear. He and his brother, William, were very close, he said. Whenever he needed to vent or just goof around, he could give his brother a call. Unfortunately, William Kiick passed away unexpectedly in February. The loss of one of the few people that was always there for him is still tough to handle, he said.
Ed Kiick's sister, Melissa Kiick, is one of the few remaining people who visits on a regular basis. She has always been close with Lisa but is now even closer with her since her diagnosis.
"There used to be a lot more people in her life that aren't now," Melissa Kiick said. "It's tough right now, because everything has changed so much. A lot of the things that she would do she can't anymore."
While her brother keeps a good attitude, the frustration of the disease takes its toll on him, Melissa Kiick said.
"I think he's frustrated 100 percent of the time. It's not aimed at her, it's just because he's helpless," she said. "He knows he looks at her and sees the same woman, but she's not the same, not through any fault of her own."
Frustration and other emotional distress is common for Alzheimer's caregivers. About 40 percent of Alzheimer caregivers suffer from depression, according to the Alzheimer's Association. Additional health care costs for caregivers was estimated around $9.7 billion, according to the association.
Ed Kiick appreciates his sister's visits. He appreciates all the visits and interactions that take place, because most of the time, it's just Ed, Lisa, their dog, Easy, and an empty house.
That's where the problem lies, he said. The average life expectancy after diagnosis is around eight to 10 years, according to the Alzheimer's Association. There's little that can be done to slow the deterioration and even fewer people that want to talk about the disease.
" I pretty much taught myself by getting on Alzheimer's awareness website." -- Dawn Hoffman
Nursing homes or assisted living facilities in Adams County either don't hold support group meetings for people affected by Alzheimer's or have a limited number of meetings, said Candy Yingling, the education and outreach coordinator for the Alzheimer's Association Harrisburg chapter.
"I remember I found a meeting once but it was held on like a Tuesday morning every other week. I couldn't make it work," Hoffman said. "I really could have used it for the beginning too because I didn't know. I pretty much taught myself by getting on Alzheimer's awareness website."
The Alzheimer's Association has a 24-hour support line to take on calls for patients and caregivers, Yingling said.
The program also organizes walks and fundraisers around the country to raise money for education and awareness. The ultimate goal is to improve the quality of life for patients and caregivers after a diagnosis, she said.
But education and awareness can only do so much. Human interaction and face-to-face emotional support need to be part of the picture, Ed Kiick said.
"You would think with all the healthcare facilities there would be something we would be able to put together," he said. "I have a feeling my wife is not the only one in Adams County with Alzheimer's. She's probably not the only one in Gettysburg."
Lisa Kiick knows she can't control how her disease progresses, but she still feels bad for the pressure it puts on her husband to do much more than he was accustomed to.
"I feel bad for you, because, you know," she said to her husband.
Her thoughts fade; she doesn't complete the sentence.
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