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Lessons From a Parkinson’s Caregiver: Hallucinations, Staying Active, and More
Carol Brower shares her journey as a Parkinson's caregiver to her husband, Joe. She stresses the importance of activity, keeping a journal, legal planning, and support, while cherishing their love and memories.
00:00:00:00 - 00:00:26:24
Carol Brower
He was seeing all kinds of things. He thinks that he's seeing rabbits coming out of his bed. He thinks there's a dog sitting there, a cat sitting there, and there's nothing there. Hi, my name is Carol Brower, and this is what I learned from being a Parkinson's disease caregiver to my husband, Joe. I met Joe in 1976 on my birthday in a bar.
00:00:27:02 - 00:00:53:24
Carol Brower
We went out for our first date a few days later. Joe remembers that first kiss and exactly where it was. Originally, Joe was having back problems, and he was shuffling his feet, and he was losing his voice. So I took him to the family doctor, and he said he thought that Joe had Parkinson's disease. He's been having a lot of hallucinations now.
00:00:54:05 - 00:01:20:02
Carol Brower
He had a blanket wrapped around him with nothing underneath, and he went to the neighbor's house, and told them we had been robbed, and that I was kidnapped. I woke up with six police officers over my bed. I had no idea what was going on, and they made sure that I was safe, and Joe was taken to the hospital that evening. To help with the hallucinations,
00:01:20:04 - 00:01:42:10
Carol Brower
they put him on different medicines and that has helped some. When I found out Joe had Parkinson's disease, I started a journal. It’s helped me when people ask me questions, so I can go back and look, I have everything down. I have the dates that he fell, all the falls he's taken when he was hallucinating, and I continued to write in that journal
00:01:42:11 - 00:02:05:21
Carol Brower
to today. It is important to keep your loved one active and moving. This could include going to the gym, joining a boxing program, going for a walk, even as like a bicycle, like a stationary bicycle. Joe did that for the longest time. They said that was really good. Another thing I've learned is when Joe has hallucinations, I just have to go with it.
00:02:05:23 - 00:02:31:09
Carol Brower
You can't fight it because they don't understand. They think they're right. They just don't understand what's going on. At one point, I had to put alarms on the doors. If he tried to get out of the house, the alarm would go off. Also, I had to have baby monitors, so I could watch him. It made it a lot easier, so you could see what he's doing and where he's at.
00:02:31:11 - 00:02:55:21
Carol Brower
It was important for me to have some time to myself to try to de-stress, and have a cup of coffee, enjoy the news before the day began. One thing that's really important is to do research. Make sure you read as much as you can about Parkinson's because you have to know what is in the future. You must prepare ahead of time.
00:02:56:01 - 00:03:19:12
Carol Brower
You must see a lawyer or an elder care lawyer. Joe and I almost lost everything. We had to put him in a nursing home. Your loved one is going to decline and might not be able to answer questions that need to be answered. You have to protect your assets. We never did that because we didn't know any better.
00:03:19:17 - 00:03:47:05
Carol Brower
It's very important to see a neurologist that specializes in Parkinson's disease. They would be very helpful in diagnosing and giving the right medicines. Make sure you ask your doctor if there are any other treatments available. It is important to get help with your loved one. I have been involved in different support groups. Online is good. Our daughter, Bonnie, and her husband have been a godsend.
00:03:47:07 - 00:04:14:02
Carol Brower
I have met so many wonderful people. I've made friends at the nursing home with the staff. They're always there whenever I need them. Joe and I renewed our vows and also celebrated our 47th anniversary at the nursing home. That was a great day. He laughed. He smiled. He even had a sense of humor. If I could go back in time, I'd do it all over again.
00:04:14:04 - 00:04:23:05
Carol Brower
He is the love of my life. ‘Til death do us part.
(smiling and laughing)
00:04:23:06 - 00:04:28:19
Carol Brower
Learn more and connect at MyParkinsonsTeam.com.
“Originally Joe was having back problems and he was having problems with his foot,” Carol Brower explained. These symptoms led to a diagnosis of Parkinson’s disease. Carol is Joe’s caregiver and wife of nearly 50 years.
Unfortunately, what started as shuffling feet and a quiet voice progressed into hallucinations that put Joe’s safety at risk. One night, during a hallucination, he told the neighbors that Carol had been kidnapped. “I woke up with six police officers over my bed,” she remembered.
Since that scary night, Carol has learned some key lessons about being a caregiver to someone with hallucinations. Below are some tips she’d share with others in her shoes.
“When I found out Joe had Parkinson's disease, I started a journal,” Carol explained. She uses her journal to keep track of Joe’s symptoms and other aspects of life with Parkinson’s. “It's helped me when people ask me questions, so I can go back and look. And I continue to write in that journal to today.”
A neurologist who focuses on Parkinson’s will be up to date on the latest treatments. “They have so much background in this disease and would be very helpful in diagnosing and giving the right medicines,” Carol noted.
“I wish that I had read everything because you have to know what is in the future,” Carol said. She also strongly encouraged anyone with a new Parkinson’s diagnosis to see an elder care lawyer to get their affairs in order.
Carol explained that keeping Joe active benefits his overall health and well-being. “It is important to keep your loved one active and moving. This could include going to the gym, joining a boxing program, going for a walk,” she said. Joe’s activity of choice for a long time was a stationary bicycle.
“When Joe has hallucinations, I just have to go with it,” Carol shared. “You can't fight it because they don't understand.” The best way to respond to hallucinations may be different for your loved one.
As Joe’s condition declined, Carol needed to find ways to keep him safe in their home. “At one point I had to put alarms on the doors,” she described. She also uses baby monitors to “see what he's doing and where he is within the house.”
“It was important for me to get up before Joe did, to have some time to myself to try to de-stress,” Carol explained. That quiet time in the morning allows Carol to spend time doing things she enjoys, like drinking her coffee or watching the news.
“It is important to get help with your loved one. With Parkinson's disease, you're not going to be able to do it alone,” Carol said. Carol leans on her daughter and son-in-law, friends she’s made at Joe’s nursing home, and other caregivers she’s met online.
“We renewed our vows and also celebrated our 47th anniversary at the nursing home,” Carol shared. Even with all the hardships from Parksinson’s, “If I could go back in time, I'd do it all over again. I love Joe with all my heart.”
MyParkinsonsTeam is the social network for people living or caring for someone with Parkinson’s disease. On MyParkinsonsTeam, more than 107,000 members come together to ask questions, give advice, and share their stories with others who understand life with Parkinson’s.
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A MyParkinsonsTeam Visitor
Beautiful Carol. Joe has a wonderful caregiver.