Alzheimer’s challenges South Bend patient, caregiver

By JOSEPH DITS

Tribune Staff Writer

Patient and caregiver describe how they cope.
SOUTH BEND — Phil Reinoehl recalls how Alzheimer’s disease drifted into his life.
After a normal day at work a year and a half ago, he says, he returned to his South Bend home and fell asleep. When he awoke, he couldn’t remember how to turn on his computer, pay bills or tell the difference between his microwave oven and a cupboard.
The years had taught him that "avoiding things doesn’t help." So he went to a psychiatrist, who told him he may have had a vitamin B deficiency and gave him a shot of B. Doctors then ran tests on him, including an MRI brain scan, and found that he likely had Alzheimer’s. All he understood of the disease was that "you can’t do anything, and then you die."
Reinoehl shared his tale in front of a few dozen people who Memorial Hospital gathered Tuesday for a "community plunge" to learn about the disease and dementia. They were from businesses, health care and education, along with family caregivers.
After his diagnosis, Reinoehl fell into a deep depression for the next few months.
"I was 58 at the time," he says. "All I wanted to do was live and die. It really was a very empty feeling."
Then he hit a turning point and decided to be proactive.
Reinoehl says he sets a daily routine because he has trouble remembering what he’ll be doing the next day.
"I don’t know completely what I did yesterday," he says. "I know I was baby-sitting my grandkids, but the details I couldn’t tell you completely."
Still, he professes: "I’m very hopeful about the future. … It’s a heck of a lot easier to live with this than to live against it."
Reinoehl’s talkative personality shines through, plus a sense of humor. But he’s felt at times as though, in groups, people avoid talking with him.
"I think I need to be challenged and to challenge myself to take care of myself," he says, feeling that he’d go downhill quickly if other people took care of everything for him.
Caregiver’s challenge
In another family, Janice Owens looks at that care from a different perspective. She’s the caregiver for two men in much more advanced stages of Alzheimer’s: her husband and her father. She’s grateful for the care her dad Raymond receives at Madison Center’s Providence House and that her husband Robert gets at Ironwood Hills Assisted Living.
It’s important, she says, to be sure the caregiver doesn’t become too isolated. She quit her job to care for both men, such an absorbing task that she soon lost contact with her friends.
"Even a trip to the store becomes very, very difficult," she says.
As Owens put it, they are "the two most important men in my life." She has legal guardianship of her dad, who is 89, and power of attorney for her husband, who is 79.
The reality that both have the disease has shaken her up even more, she says, than Sept. 11, 2001, when she was just a block away from an airplane’s crash into the Pentagon.
"I heard, saw and smelled carnage," she recalls of that terrorist act.
She says she wouldn’t have been able to talk to the "community plunge" group four months ago. She’d just moved her husband into Ironwood Hills. It was the right thing to do, but she was grieving the loss. After 37 years of marriage, Robert was out of their home.
"It was official," she recalls. "I had to find a new way to make the relationship work."
Robert was diagnosed in 2006. She’d been noticing the signs of it.
Her father Raymond had mental lapses that her mother had covered up. But, as her dad drove her mom and aunt to a family gathering in 2006, he became confused and stopped the car over a railroad tracks. A train was speeding toward them. Her mom and aunt screamed, and he came to his senses in time to drive on.
The stress of that event caused her mom to have a heart attack the next day. A month later, her mom was lying on the floor. Her dad lay at her side "to be with her." He didn’t think of calling 911, or that it was even necessary, Owens says. By the time he called a relative the next day, she’d died.
This was a man, Owens says, who’d served as radio operator in the Army, had an IQ of 130 and could read Morse code at one time.
After a lot of talking with family members, she had him tested a year ago, confirming that it was Alzheimer’s.
Her advice: Don’t give in to denial about the disease.
Then reach out for help.
"I’ve come in contact with a multitude of people in the community who’ve lent a hand to me," she says. "You don’t need to sit at home and suffer with it alone. … There is so much in this community. You can always put your hand out, and there will always be a hand to reach back to me and pull me up."