Guardians confront care issues

EDITOR’S NOTE: This is another installment of a series exploring issues faced by families who care for special needs adults.

Mariel Rosenau is a special needs adult who lived her first 50 years at home with her parents.
Though suspected of having a form of developmental disability, her brother Larry, 65, said the family cannot find any record of medical or related care.

“She has a mind of an 8-year-old in most things,” Larry said. “But in other things I can’t believe how knowledgeable she is.

She never forgets addresses, phone numbers or birthdays. But as far as practical things, she can’t read or write.

She can understand things but can’t put it all together.”

Both Larry and his wife, Marie, of Glendale had parents who died in the past few years. They now find themselves in the position of being the guardians for each of their special needs siblings.

Marie’s brother, Stephen, 47, lives at Rainbow Acres, a ranch for special needs adults in Camp Verde, while Mariel, 55, lives in the Banner Special Adults Residence in Peoria.

Stephen was born with tuberous sclerosis, a rare, multi-system genetic disease that causes benign tumors to grow in the brain and on other vital organs.

“We knew from the time he was 7 he was mentally retarded,” Marie said. “He has lost a kidney, has multiple tumors and has seizures that are pretty much under control.”

“But he’s more capable of dealing with the world than my sister,” Larry said.

The responsibilities that go with taking care of a sibling can be complex.

“It’s just something you do and don’t think about, except wondering what are we going to do when we’re not around,” Larry said. “Financially, my brother cannot do it, and my (other) sister medically can’t do it.”

Mariel lived a sheltered life at home with her parents, Larry said.

Communication isn’t easy for her.

New people and situations scare her. So when visitors came to the home, Mariel would often hide in her room for the majority of the time, maybe sticking her head out to chat after a while if she had met the people before.

When Mariel and Larry’s father died in 2004, Mariel and her mother moved from their residence to a nursing home, an ordeal for Mariel.

“We had to get a doctor to make a house call for medication to calm her down in order to move her,” Larry said.

A few months after their father died, their mom died.

Mariel was placed in a home that presented itself as a licensed care facility. The building was owned by a family friend and leased to the business.

“We were desperate to put her someplace so we tried them,” Larry said.

Larry doubts the home was licensed and said he didn’t research it at the time.

And the woman in charge had Mariel write checks to her for cash.

“They would take her to the bank, and it was bleeding us dry,” Larry said.

After five months, Larry discovered the situation. The friend evicted the caregiving business, and the bank returned the money on the condition the family did not prosecute.

That’s when the Rosenaus found the Banner Special Adults Residence in Peoria, which they say Mariel loves.
She has her own room there, decorated in a fashion befitting a young girl, with stuffed animals and dolls. Her felt paintings decorate the walls. A Dora The Explorer cartoon comforter is on her bed.

Living at the home, Mariel became involved in Special Olympics. Last year, she competed in bocce ball.

Trips to Costco with house members is a treat and store employees know her by name, Larry said.

“Where she is now, she really loves the people,” he said.

Mariel spends the weekends with the Rosenaus, which presented both unforeseen challenges and rewards.

“She thinks she is a princess and was treated like one all her life,” Larry said. “My mom took care of her by brushing her teeth and (with toilet hygiene). This is what we’re up against.”

Marie has been working at socializing Mariel more, including taking her to church on Sundays.

“When she gets in a crowd she shakes,” Marie said. “And now I take her to church on Sunday, she will sing along.”

“When she sings she doesn’t stutter,” Marie said.

As comfortable as Mariel is, the Rosenaus worry about where she will end up when the money her parents left for her care runs out.

Larry said he hopes to find a similar facility that would charge the family Mariel’s Social Security as payment.

“If we have to pay a little bit more, we probably can,” Larry said. “But none of us is financially able to support her here at $2,200 a month.”

Having Mariel live with them is a last resort, Larry said, because they worry about her losing touch with other special needs adults who are keeping her active and social.

“We don’t want her to lose contact with the outside world and revert to what she was,” Larry said.

Joy Slagowski may be reached at 623-876-2514, or jslagowski@yourwestvalley.com.

DID YOU KNOW?

>> The Banner Special Adults Residence, 12810 N. Plaza Del Rio Blvd., Peoria, is a 10-bed facility that opened in March 1999 and provides room and board, activities and medication administration or supervision, depending on the needs of the resident.  
Residents receive supervision or assistance with personal care, follow through with behavioral programs, transportation to doctors’ appointments, church and activities including Special Olympics, SCYSAC and work.  
The residents must have some type of developmental disability such as autism, cerebral palsy, Down syndrome, epilepsy or cognitive deficiency.
There are two private rooms that cost $2,482 each a month for everything except medication.  
Semi-private rooms, which share a connected bathroom, cost $2,172 per month.
Call 623-815-2770 for information.

The Arizona Department of Health Services has a searchable index of licensed homes for the developmentally disabled, along with any violations that may have occurred? The site also has listings of assisted living and long-term care facilities, including inspection reports.

http://www.azdhs.gov/als/search/index.htm