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Living with Alzheimer's: A daughter recalls
When you get there I see diamonds in your hair
White feathers with glitter
That sparkle everywhere
And on your head a halo of gold
Your mind full of all
Your mind full of all
You used to know ...
-- From the song "No Longer Can Remember" by Candy Foust McMickle
Watching a loved one suffer through the ravages of Alzheimer's disease is a painful experience for the patient's caregiver. No one knows that better than Candy Foust McMickle, who cared for her mother, Dinah Foust, who suffered with the condition for seven years.
"My mother really was more than a mother ... she was my best friend," McMickle said. "She moved in with me when I was 28, and she lived with me for 18 years."
Alzheimer's disease is a form of dementia. As the terminal disease advances, sufferers experience symptoms such as confusion, irritability, aggression, mood swings and long-term memory loss. The average life expectancy after an Alzheimer's diagnosis is seven years; fewer than 3 percent of those diagnosed live for more than 14 years after receiving a diagnosis.
McMickle and her mother were partners in a cleaning business and an antique shop. When McMickle began a DJ business, her mother would often help her out.
"We literally did everything together," McMickle said.
McMickle's mother was diagnosed with Alzheimer's in 2002.
"It was little things that made me think something was wrong," McMickle said.
"At my daughter's sweet 16 party, Mom was cutting ribbons for the balloons, and she couldn't cut them the same length. Even after I showed her a couple of times, the ribbons she was cutting were too short or way too long."
The party was a big event, complete with bands and a limousine.
"Mom really wanted to be a big part of it, and I think it upset her that for some reason she couldn't do that one little thing right," McMickle said.
McMickle and her mother both laughed the incident off, but then other signs emerged.
"She stopped flushing the commode," McMickle said. "She loved to do the dishes, and one day she was putting them away. She had a coffee cup in her hand, and she just stopped, looked at me and said, 'Where does this cup go at?'"
Eventually, McMickle's mother got herself into financial trouble because her memory was deteriorating.
"She started ordering all kinds of things and writing checks there was no money for," she said. "She was ordering things from junk mail, flyers and catalogs."
McMickle received a phone call from her mother's bank saying her mother's account was overdrawn.
"When I asked her about it, she said they were crazy," McMickle said. "She thought everything was OK."
When McMickle finally decided she had to have her mother evaluated, she refused to allow herself to think it was Alzheimer's.
"I told myself if was probably a little brain tumor or some blockage," she said. "I thought maybe she was having some kind of seizures. I wanted to believe that whatever it was, it was something that could be fixed and she would get better."
At first, a doctor diagnosed McMickle's mother with a seizure disorder, and put her on seizure medication. She was treated for that disorder for seven months before McMickle decided it was not working. McMickle took her mother to a doctor in Danville, and the Alzheimer's diagnosis was made.
"My mother didn't want to believe it, and she fought with me about it," McMickle said. "She didn't want to hear or learn anything about Alzheimer's, because she didn't want to face the fact that she had it."
McMickle continued to care for her mother on her own for several years.
"I knew I couldn't do it anymore when Mom started crying a lot," McMickle said. "She just cried all the time, and she never knew why she was doing it. I was never sure what to do."
Her mother's struggle began to take its toll on McMickle.
"It was a psychological battle, and it was wearing me down," she said. "I just ran out of things to say when she would argue with me. You can't reason with an Alzheimer's patient. She couldn't understand and I couldn't help her."
McMickle's siblings live in Texas and Florida. They kept in regular contact, but couldn't be of much help.
"They weren't there to see the daily things that were happening," McMickle said.
McMickle became so wrapped up in caring for her mother that she lost sight of the other important things in her life.
"I wasn't there to go with my daughter to get her prom dress," she said, her voice catching in her throat. "I stopped being a wife and mother because my main focus was my mother."
McMickle's mother did end up going to stay with her brother in Texas for a time in 2003, but the arrangement didn't last.
"I didn't realize how much taking care of my mother was taking out of me until she was gone," McMickle said.
It was 2005 before McMickle finally admitted she needed to think about putting her mother in a nursing home.
"She left a tea kettle on the stove once, and I realized she could burn down my house," McMickle said. "She let our dog out and it got hit. I found her sitting on the side of the road crying because she'd killed the dog."
McMickle eventually decided to place her mother at The Waters of Greencastle.
"The first time I walked in the door, I turned right around and walked back out," she said. "It took me six times before I actually stayed and talked to anyone."
The first day McMickle's mother was at the nursing home, McMickle painted her mother's room in her favorite color, purple, and stayed with her all night.
McMickle visited her mother every day. She became a volunteer at the Waters, and then was offered a part-time job. In March 2006, she became the facility's full-time activities director.
"I learned so much, even as a volunteer," McMickle said. "Being here helped me understand this disease ... what it comes down to is that you have to live in their world, not yours."
McMickle's mother stuck close to her daughter before she made friends at the Waters.
"She was with me like a little shadow," McMickle said, smiling at the memory. "She grew to love it there ... people thought she was the activities director."
As her mother's disease progressed, doctors took her off her medications.
"I spent the last 14 or 15 days she was alive in her room with her, watching her die," McMickle said.
"I was holding her when she took her last breath."
That was on Aug. 23. Per her mother's wishes, Dinah Foust's family did not have a funeral for her.
"We had a celebration of life," McMickle said. "She never wanted a funeral. She wanted there to be food and karaoke, so that's what we did. We had the best time."
McMickle has always been a singer and songwriter. She put her music on hold while she took care of her mother, but recently picked it back up. She released a CD containing many songs she wrote herself, including "No Longer Can Remember," a song about her mother's struggle with Alzheimer's.
McMickle's music is available at http://www.myspace.com/foustcandy
"I used the name Foust on my CD because my dad, who loved my music, died when I was 17," McMickle said. "He asked that if I ever did anything with my music that I use my maiden name so he could be a part of it."
"The song I wrote for my mother really helped me heal," she said. "My advice to people who are caring for a loved one with Alzheimer's disease is to keep doing what you're passionate about, and use it to help you."
A support group for Alzheimer's patients and their caregivers is held on the third Monday of every month at Mill Pond Health Campus in Greencastle.
"Our group is really an educational series," social worker Jeannie McLean, who leads the group, said. "So many caregivers who come have been carrying the load themselves for a long time ... usually at least a year or more. They just hate to ask for that help."
McLean said the situation McMickle found herself in is fairly common among the children of parents who suffer from Alzheimer's disease.
"A lot of the time we find it's one child in the family who ends up taking care of Mom or Dad," she said.
McLean said one of the most important things for caregivers of Alzheimer's patients is to find a support system.
"Many times it's their church family," she said.
McMickle still loves her job at the Waters, and credits her mother for having it.
"It was one of many gifts she gave me," she said with a smile.
As painful as it was to watch as her mother died, McMickle said she wouldn't trade the experience for anything.
"I talk about it in the song I wrote for her," she said quietly. "God didn't wait too long to bring her home when she no longer remembered my name."