Houston native Shelly Taylor Page works two stressful, full-time jobs – one as a law professor at Southern Illinois University and the other as a full-time caregiver to her mother, Gigi, who suffers from dementia.
“It’s just heartbreaking. It really is,” Page said. “You do have good days, or rather good hours. This morning for example, I told her a story from the time we left home to the time we got to the adult daycare. She had no memory of anything I had told her.”
The 82-year-old is among one in ten Americans over age 65 who suffer from dementia. And like many families, Page says her family initially missed the signs.
“My mother drank a lot when I was younger. So when she started saying things over and over, we assumed it was because she had been drinking. So it kind of got mingled in with that. But in 2006, my dad started saying ‘She hasn’t been drinking today and she’s saying she sees somebody standing outside breaking into the car and there’s nobody breaking into the car.’ Then my dad died a couple of years later and my mother got worse. For 10 years she lived alone. I tried to convince her to move to Austin with me, but she wouldn’t.”
Eventually, Gigi’s children knew she could no longer live alone. She was shuffled from one of Shelly’s siblings to the other.
“My brother had a lot of people living with him. My youngest sister had a gumbo and decorating business and she would have to leave my mom home alone. And once, my mother got out and a stranger picked her up and called Adult Protective Services. That’s when I got involved and came to Houston and got her,” said Page, who now lives in Tennessee.
Page knew she was in for some challenges. She just didn’t realize how hard those challenges would be.
“It’s hard. I ain’t gonna lie, but it’s rewarding. I don’t keep a lot of stuff in her room because she packs everything up. I do let her keep some combs, a toothbrush, two towels, a couple of little blankets and maybe whatever she has had on. The other day, I walked into my mom’s room and she had packed everything up and I’m tired, I gotta get to work and I just busted out crying,” she said. “So I think it’s just about figuring out what she needs to do to stay safe and to help the person you’re taking care of know that they are safe and that they are loved.”
Page, who recognizes what she does as her biggest burden AND her biggest blessing, says patience is key.
“The biggest challenge is being patient and remembering when they are yelling and cussing and being belligerent and angry, that is the dementia and the confusion that they have. My mother is feeling like ‘Shelly, why in the hell am I living in your house? I don’t know this house. I don’t know this place.’ In her mind, it’s 2006. I will show her pictures in the hospital when she had brain surgery. Or when she lived with my sister. My mom is like, ‘I don’t know where the hell you got them pictures. But I was just at my house.’ And sometimes she doesn’t even remember my dad died.
Page says she has to take moments for herself – her sanity depends on it.
“I took today and I drove to St. Louis,” Page said. “I had recently lost 33 pounds and so none of my clothes fit and I’m really cheap. So I went to the thrift store. That’s my mental health day. There’s not a whole lot I can do because it’s just me and my husband.”
Page says it’s imperative that you utilize available resources.
“My mother just got here in June. She’s never paid into the tax system here in Illinois. But she goes to a free adult daycare. And it’s amazing the services that they offer to people. They were even going to send a home healthcare worker to our house to clean up and wash her clothes. I didn’t need that, though one of the hardest things is getting my mother to bathe,” she said. “You gotta figure out what are the idiosyncrasies of person I’m caring for? What are their little hangups? Because it might be different from my mom’s. She doesn’t like being told it’s time to take a bath. Time to take a shower. She does not like that at all. So I have to figure out how to trick her.”
Page credits her husband, James, with her ability to navigate this caregiving road.
“When I get tired and frustrated and want to send my mother back to Houston, it’s James who says, ‘Shelly, why would you send your mama back when, you know that situation hasn’t changed in Houston.’ In the beginning, it was so hard. I’m yelling at my mom because I didn’t really get it. I’m going through menopause so I struggle with my weight and my mom called me a fat, ugly b*tch. That devastated me. But it was James who reminded me, ‘that’s not your mama calling you that, it’s the disease.’ I didn’t get that. So your spouse need to be there for you emotionally, and times when you just need him to watch your loved one so you can run to HEB.”
Understanding your loved ones frustration is also crucial, Page added.
“You gotta ask yourself, did my mama ever talk to me like this when she didn’t have dementia? No she didn’t. My mother is confused often. She doesn’t know what is happening. She’s like, ‘I’m your mama. You’re not supposed to be taking care of me.’ It’s got to be hard for them. Imagine all of the stuff you’ve done just today and you, you have no memory of doing that stuff. The last thing you remember was two weeks ago and your children having to tell you or your husband having to tell you what you did an hour ago. God, I cannot imagine that.”
Over the years, Page has had to learn tricks to make caregiving just a little easier.
“No light bulbs in the room at all. My mom would keep the light on all night long and literally not sleep. So we took the light bulbs out and I learned this from a doctor who treats people with dementia. I hide the remote to the TV because that’s another source of stimulation that keeps them up all night long. If they do not have access to a commode, go buy one of the little potties. The reason I say that is because I had to put a lock on the door. It sounds horrible, but my mother’s room is right at the front door. And I don’t want to run the risk of her leaving.”
And that includes finding whatever works to help make your job easier.
“We live in a state where marijuana is legal. This really saves me other than the grace of God. I give her marijuana edibles. I would not have made it without the marijuana edibles the first two months. She was belligerent and angry all the time. So I figured out edibles calmed her. I tell her they’re vitamins. My mom got a sweet tooth, so she loves candy. And so I’ll give her a half of an edible. Every morning I do it religiously because I don’t want her going to the adult daycare cussing them people out. And then when she gets home, I give her the other half. It does not make her feel like she’s high. It calms her down where she’s walking around the house in a frenzy.”
For many caregivers, the guilt of their feelings weighs heavily on them. That’s not the case for Page.
“I don’t have any guilt. My main priority for my mother is that she’s safe. My second priority is that she knows she is loved. And third, I give her food and clothes and I dress her. My mother was an excellent mother when we were growing up. She sacrificed all the time for us. And so what I do for her is what she did for me.”
Symptoms of dementia
Signs of dementia can differ from one person to the next, and can include memory loss and confusion, difficulty speaking, understanding and expressing thoughts, or reading and writing, according to the National Institutes of Health.
People with dementia can act impulsively or show poor judgment, and they can have trouble paying bills or handling money responsibly. They may repeatquestions, use strange words to refer to familiar objects and take longer than usual to completedaily tasks.
Wandering and getting lost in a familiar neighborhood is another sign of dementia, as is losing interest in daily activities or events or acting as if they don’t care about other people’s feelings. They may lose their balance or have other problems with movement. At times, people with dementia can hallucinate or experience delusions or paranoia.
While doctors don’t know exactly what causes dementia, they do believe it’s genetic. Which is why Page is taking precautions now.
“ I’m doing everything I know to not get dementia. A doctor told me two things you can do to prevent chances of get dementia, maintain a healthy weight, and make sure you are getting at least seven hours of sleep a night. He also told me, try to learn new things every day. Keep learning new skills. So right now, I’m in the EdD program getting my doctorate in education. If it means learning a new word in Spanish, or just learning three new words every day, keep your brain active.”