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Family rallies to help sibling with degenerative brain disease

Family rallies to help sibling with degenerative brain disease

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For the Andrea family, three times is definitely not a charm.

Three times in the past two decades, three members of the family have been visited by forms of dementia.

The first person to experience dementia was Al Andrea. About six years before he died in 2003, he began developing signs of Alzheimer’s disease.

A few years later, his wife, Anne, was also diagnosed with Alzheimer’s. She died in 2012.

In 2015, their daughter, Mary Pat, was diagnosed with Frontotemporal Dementia at age 65.

This was not what anyone in the family expected. Although they had already gone through caring for parents with Alzheimer’s, the adult children were not ready to have one of their siblings diagnosed with a form of dementia.

“The age thing was a big thing,” said Susan Andrea-Schlenker. “We didn’t see it coming.”

“In hindsight, we could see moments that were later explained by the disease,” David Andrea said.

Prior to onset of FTD, Mary Pat had been a highly articulate and talented artist, said her family. Her abilities spanned graphic design, interior design, writing and retail.

She was particularly skilled in spatial geometry, said her boyfriend of seven years, Mike Foster. “She could see in 3-D.”

“She could talk to contractors in their own language and knew all the building regulations and codes,” David said.

For most of her adult life, Mary Pat lived in Baltimore, where she was an art director and taught graphic design. She also ran hometown-themed shops in Baltimore, Washington, D.C., Philadephia, Milwaukee and Door County.

“She was an entrepreneur just like our grandfather (Jack Andrea, founder of Andrea’s Gifts),” David said.

As a retailer, Mary Pat was ahead of her time, David said. “She sought out local authors, artisans and foods.”

The oldest of eight Andrea siblings, Mary Pat was looked to as a role model. “She was our big sister and family leader,” Susan said.

While still managing a shop in Baltimore, in 2004 Mary Pat moved back to Kenosha to join the family management of Andrea’s Gifts. She also ran a booth of artwork at Kenosha’s HarborMarket.

Noticing changes

A few years ago, Mary Pat’s family began to notice changes in her. At first they chalked it up to the stress of moving back to the area and taking on a lot of new responsibilities, but it soon became clear that more was going on.

“She did things that were out of character, but we didn’t know why,” David said.

“She couldn’t process conversation among multiple speakers or multiple actions,” Susan said.

Mary Pat’s siblings saw similarities to the Alzheimer’s issues experienced by their parents, but in other ways, her condition was different.

For starters, at 61, she was younger than her parents, who were in their 70s and 80s when Alzheimer’s struck them. She was also increasingly fearful of changes and anxious at social gatherings.

Two years ago, testing revealed Mary Pat was suffering from Frontotemporal Dementia, a degenerative condition of the brain that primarily affects a person’s ability to utilize and process language.

After exploring options for Mary Pat to remain in her own home, it was decided that a facility specializing in memory care would suit her best.

Her siblings say Mary Pat was fully involved with the transition, telling family members she wanted a private room and exactly which of her belongings she wanted to furnish it.

“If she couldn’t find a word for an item, she drew a picture of it,” David said.

Although the disease has progressed, since the move she has become calmer and less stressed and says she feels safe, David said.

The downside for Mary Pat is that at 67 she is considerably younger than her fellow residents.

Support network

Mary Pat’s siblings say the experience with their sister has been a learning process. “We thought we had learned so much with our parents, but some things are different with FTD,” Susan said.

“We’ve been caregivers now for almost 20 years, and we feel so blessed to have family that can work together,” David said.

In addition to family, Mary Pat’s support network includes several lifelong Kenosha friends who visit her to share home baked treats and memories of their high school days.

Family and friends also support Mary Pat by participating in the annual Walk to End Alzheimer’s fundraiser.

The family first began walking for the annual Alzheimer’s fundraiser in honor of their father in 2004, calling the family team “Al’s Memory Walkers.”

Over the years, the group grew to include friends and other families affected by Alzheimer’s and other types of dementia.

Now called Team Andrea, the team is captained by Annie Bruss, Mary Pat’s niece.

“(Dementia) is a huge looming health crisis for this country,” David Andrea said. “We want to contribute to help find a cure.”

David noted that the family struggled a bit regarding the decision to share their sister’s journey. “But on the other hand, we want to help remove the stigma; we don’t want people to feel they have to stay in the shadows.”

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