Since its inception in July 2012, the UCLA Alzheimer's and Dementia Care program has cared for more than 1,350 patients and their families. In this interview, Linda Kerr chronicles her journey as a full-time caregiver to her mother, Martha Kerr, who suffers from dementia and shares her experiences of being among the first participants to enroll in the UCLA Alzheimer's and Dementia Care Program.
Linda: My mom loved her work. She worked at Jackson Memorial Hospital in Miami, Florida as a hospital ward supervisor. She worked with doctors and nurses and retired after 25 years. She also volunteered for the Red Cross and United Way. My mom was beautiful inside and outside: always helping others.
Linda: I started noticing strange behaviors in 2002. She signed up for a $3000.00 contract for physical therapy/massage from a complete total stranger that she met at a swap meet. She didn't read the contract and gave the stranger her credit card, just because he seemed honest. She had no idea what she signed. I had to get a lawyer to get her out of it.
She was also getting lost a lot and driving the wrong direction. Finally, she crashed her car against the neighbor's front yard and started getting panic attacks. That was the turning point for me.
When I went to her house that Christmas, I noticed that her cupboards was filled with only five pound bags of sugar, a lot of paper towels and gallons of water. There were dirty dishes that have been sitting in her sink for days or weeks. Her refrigerator had only ice cream and rotten food. Then we'd go supermarket shopping and she'd want to buy more paper towels and more sugar.
I thought to myself, what is going on? This wasn't like her. She was never like this. I realize now that these were the early signs of dementia. So that was it for me. I brought her home to stay with me. She didn't want to stay with me. It was hard convincing her. She was always an independent person but it got really bad so I decided to bring her from Miami to stay permanently in LA with me.
"I have faith and trust in my medical team. I wholeheartedly have 100% trust in Dr. Reuben. He is an amazing doctor and person."
Linda: It's made me change my career path from an actor to a voice actor. If I don't get enough sleep or if I look frazzled, it does not matter because there is no camera. Now, I don't have to travel and I can work directly from home at the recording booth that I built in the apartment so that I can work as I am taking care of Mom.
Financially, it has been a strain for me to keep Mom with me. She ran out of money awhile back and it has been hard to keep up with costs pertaining to her care.
It has also put an enormous strain on my marriage. My husband is great but I realize that dementia care for my mother was not part of our wedding vows so I try to exclude him as much as possible. He is not as patient as I am. It works out better this way.
Linda: Many times and even now, I'll have family members and people who say to put her in a nursing home. It's not that easy because they'd throw us out because of her combative behavior and because of her fall risk. They don't want patients like Mom…she can be a liability at times. Where are we supposed to go? What are my options besides a locked facility where she might get drugged up with anti-psychotic drugs? I love my mom and want the best ending for her. She deserves the best.
Having the Dementia Care Team has been a great help to us. It's nice to know that someone is going to do something, that there is a place that I could call and that someone is on my side and, more importantly, my mother's side. It's nice to know that I have a doctor who understands.
Linda: Having a resource, having someone to go to, and having them be a part of the whole process.
I have faith and trust in my medical team. I wholeheartedly have 100% trust in Dr. Reuben. He is an amazing doctor and person.
Linda: The program helps us problem solve in very creative and unique ways. They understand how to support us in ways that other health care providers don't understand. For example, we were trying to use Seroquel for my mother to treat her sundown syndrome, but I didn't like the effect it had on her, making her more of a fall risk. So Dr. Reuben suggested getting a cat. Though I was skeptical, the cat worked! Sasha is the cutest thing you have ever seen. The cat instinctively, and I'm not kidding you, knows my mother and her needs. It's a perfect match. The cat will jump into bed with her and stay all night with her and they'll fall asleep together. It's truly precious. That's her Seroquel. No more drugs.
Linda: Have a routine. It's one thing that I've learned because of Dr. Reuben and Leslie's (my Dementia Care Manager) suggestions and because I've been doing this for three years now. It's one of the biggest lessons I've learned as a caregiver. It not only helps my Mom but any who is taking care of her. That way they have something to go by. Otherwise, it can be scary for caregivers. When we have breakfast in the morning, we listen to the same music, Nelson Ned. She eats breakfast to his CD's every morning. If you put him on at night, she'll want to eat french toast for dinner. She hates brushing her teeth in the morning but she'll do it because we'll get to watch "I Love Lucy" afterward. Leslie gave me the advice about the "I Love Lucy" DVD's and now it's a part of our routine every day.
Linda: Absolutely. It's a great program that is valuable both to the patient and the caregiver. I wouldn't be able to keep my mom at home, honestly, without having this support system. Whenever I call with an issue, no matter how busy they are, they call right back that day with an answer on how to treat Mom or where to go or what to do. They are so reliable and organized. My mom's health issues are still unpredictable and scary at times, so it's comforting to know that I am not alone in making decisions. It really does take a village to keep someone with dementia at home.
I made a vow to myself that I will always keep her under my care. We don't know what God has planned, but as long as I'm able to, as long as I'm here, hopefully, I can continue the caregiving because we have a team behind us. I am extremely grateful to Dr. Reuben, Leslie Evertson, and the UCLA Dementia Care Program for all they've done for us.