Mary Susan Gibson, John Storck and Betsy Wilson live in different cities, work at different places and yet they share one commonality: each has a loved one suffering from dementia.
For Gibson it’s her mother, Kathryn. Storck watched his father, Robert, decline because of the disease and eventually pass away. Wilson serves as the medical power of attorney for her mother-in-law’s sister. The situations, as with any illness, are as unique as the people living through them, but the feelings of helplessness, loss and worry impact everyone.
Kathryn Bolin lives in the memory care unit at Heritage Homes. When Gibson entered the locked unit on a cloudy day in November, her mother started running toward her, at as much of a run as her 85-year-old body would allow. She hugged her daughter tight, and smiled the entire time she was with her.
Gibson takes after her mother in that way. Even when she describes watching Bolin’s deterioration as “horrid,” a small smile remains, as if keeping it will make the pain fade. Despite the smile, Gibson’s eyes fill with tears.
“I think this is the very best I can do for her. I tried it at home; it didn’t work,” she said.
Bolin still recognizes her daughter as someone important in her life, although she doesn’t know Gibson is her daughter. She thinks she is back in college, living in a dormitory.
About four years ago Bolin exhibited early signs of dementia, but her condition worsened noticeably just two years later, in 2010.
“Two years ago it wasn’t that bad,” Gibson said. “We didn’t recognize it at first. I would think, ‘This is bizarre,’ these things she was asking me to do, but it’s described in her particular situation as a disconnect.
“You will say, ‘Okay, sit in the chair,’ and ... she will walk up and sit down rather than walk up, turn around and sit down,” Gibson said.
Gibson is pleased with the care her mother has received at Heritage Homes. She can come visit her mother whenever she chooses, and the staff always keeps her informed.
Heritage Homes is an assisted-living facility. When patients in the unit can no longer do everyday things for themselves, hospice care is brought in, said Administrator Jan Zimmerman.
The philosophy in caring for residents involves lots of patience, Zimmerman said. Many residents repeat things over and over, for example, and while that type of behavior can be annoying, staff members have to understand the person has no control.
“So many people want to argue with them, but you have to realize they’re in a different reality. We can’t bring them into our world, so we go into theirs,” Zimmerman said.
While the facility doesn’t offer a support group for family members, the staff members are available to answer any questions families have, Zimmerman said, something Gibson appreciates and has taken advantage of.
Robert Storck went through periods of paranoia and anger. He felt people in his life were attempting to take advantage of him, people who he loved and trusted prior to his illness, his son John Storck said. The anger caused Robert to physically strike out at others, including John. The shift in Robert’s behavior caught his family off-guard.
“You really aren’t prepared for the changes that a loved one goes through,” John said.
Robert lived at home, with his wife, Caroline, caring for him before he moved to Clearview, the county-run skilled-nursing facility in Juneau. The family hired Help at Home of Iron Ridge to provide a few hours of care each day, giving Caroline a much-needed break.
The small breaks helped Caroline, but once Robert moved to a nursing facility, John felt his mother had much more energy. She visited her husband of more than 60 years every day.
Clearview has had a dedicated unit for Alzheimer’s and dementia patients for the past 15 years at least, said Administrator Jane Hooper. Approximately 40 people living with some form of dementia reside at Clearview.
Consistency is important for residents with dementia, so Clearview staffs its memory care unit accordingly, making sure the same people take care of residents as often as possible, Hooper said. That consistency helps families as well, because they always know who is working with their loved one.
“Our families tell us they know the nurse in that household, they know they can call her,” Hooper said. “We encourage families to ask questions, and no question is ever too small to ask.”
As with Heritage Homes, residents in the memory care wing at Clearview are separated from the general population, which helps cater to their specific needs.
“There is less stimulation for the patients, but it’s homelike. There aren’t a lot of noises or buzzers,” Hooper said.
John Storck is glad his family chose Clearview for Robert, not only because he received the care he needed, but also because of the facility’s focus on Alzheimer’s and dementia.
“We were extremely satisfied with Clearview, and I’m not familiar with other facilities that provide specialized service for Alzheimer’s and dementia, but I did come to the realization that you do need skilled care for Alzheimer’s,” John said.
Robert Storck passed away in April, at the age of 86.
Betsy Wilson is the medical power of attorney for her mother-in-law’s sister, Barb Pimm. Pimm lives in Marquardt Village at Zinzendorf Hall. Her husband passed away some time ago, and without any children, Wilson, a nurse in Madison, became her medical guardian.
Every day Pimm followed the same routine, walking to and from the library with a stop at Frank’s Corner Café in between, but her dementia made the family worry, especially as her condition worsened.
“It became clear that at any point if her routine became interrupted she wouldn’t get herself fed ... She lost a lot of weight,” Wilson said.
A healthy person all her life, Pimm didn’t have to take medications consistently before her illness. However, when a few problems requiring prescriptions arose, Pimm wouldn’t take the medication, Wilson said. She also stopped cleaning her house, managing her checkbook and bathing.
Pimm maintained nothing was wrong when approached about the possibility of Alzheimer’s disease.
“She would deny that it was a problem or a concern,” Wilson said. “It was clear she wasn’t safe anymore. It’s hard when you get to that point where you have to say, ‘I don’t care what you think. This is what has to be done.’”
The family contacted an aging and disability resource center to get information about facilities where Pimm could live, and sought advice from the Alzheimer’s Association in Madison.
The family chose Marquardt because they wanted Pimm to stay in Watertown, and Wilson said Pimm receives good care there.
Marquardt does not have a dedicated memory care center, but with the upcoming expansion, one should be up and operational by late spring 2014, according to Sherry Cira, Marquardt’s director of organizational advancement.
Despite not having a unit specifically for Alzheimer’s and dementia patients, Cira said the village provides extensive training to its staff members to help them understand dementia.
This fall, Marquardt Village held mandatory virtual dementia tours for its entire staff. Virtual dementia tours imitate the experiences of someone living with dementia. Marquardt mandated the tours to show its staff what Alzheimer’s and dementia patients live with each day, Cira said.
“The individuals caring for them have to have empathy, and when they aren’t well-trained they can’t meet that need,” Cira said.
Wilson recommended people write out their wishes for long-term care before the disease progresses too far. She said loved ones should also seek information about the disease and resources available to help them.
“The more you know the better it will be for you to go through it, and the better it will be for your loved one,” Wilson said. “I think like a lot of illnesses there’s a lot of guilt and shame and doubt, but it’s an illness. It’s nobody’s fault.”