Deborah and Christine
What is your name and who do you care for?
My name is Deborah and I care for my mother, Christine Smith.
How long have you been a caregiver?
I've been a caregiver legitimately for about 15 years, but when I look back at it, her illness probably started 30 years ago. My mother is a retired school teacher with two masters degrees. Her best friend was a school principal, and she called me one day, and said, “Hey, they've released your mom from her classroom.” And I said, “What are you talking about?” She was telling the kids that their skin was burning and that there's a house across the street where the mafia lives, and they're going to get them - and things like that. I knew that things were crazy, but that's where the dementia and the schizophrenia kind of started, and then it moved over into full-blown Alzheimer's.
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At what point did you move in with her? Or did she move in with you?
Because of her schizophrenia, we actually sold her home. She was in her home and then she couldn't stay in the home, so we moved her to another place – a condo. She said the people next door were doing "stuff" to her. Within 30 days after we moved her out, we moved her again and then I moved to Texas, and she moved in with me.
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What would you say are the biggest challenges you face as a caregiver?
Originally, it was finances because it was $3500 a month and that's with her sharing a space with two other people. It took me a long time to find the right place for my mom. My mother looks really good. She was tall, looks young and very active. When I first put her in an assisted living facility, she kept leaving. At one point they added new staff and a staff member said, “There's a new lady that started. Is she the new director?” Then the guy looks outside and says, “No! That's Mrs. Smith, she’s supposed to be inside.” She left that facility three times. She was just walking around the street with her purse. Finally, they called me and said, “I'm sorry, but your mom has to be in a locked facility.” And that was just so hard. So I would say the finances and accepting the fact that I was the one to have to carry the burden both financially and emotionally. Also, being in denial that this was happening and finally the fact that her care wasn't covered.
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You take for granted that as someone is getting older you can just look on their medical coverage and they would have somewhere to go. But with private facilities, you have to pay your own money. If you're going to a Medicaid facility, which she doesn't qualify for, to me, it's going to look like a prison.
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What advice would you give to a new caregiver just starting this journey?
I would say that if you see weird things going on, immediately look into their finances and make whatever changes you can. You may have to put their assets into your name or somebody else's name. But definitely get financial and legal affairs in order.
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Finding a support system is good. I went on Facebook and online and looked up Alzheimer's and I became a part of an online support group. You can post everyday and talk about what you are going through. And I'll post something like, "Today was a good day, mom knew who I was, and she looked at me and she's like 'Hey!' But then I went out the room for 15 minutes, I came back later, and she forgot." It's a good way to share the good and the bad. I thought that because I was superwoman, and I feel like I don’t ever need any help, that I could do it all myself. Then I realized being able to talk about it and knowing that there are other people that have the same problems really helped.
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And I will say I'm a little nervous myself because I forget stuff and because my mom is the first generation ahead of me – I wonder if it's going to hit me. There are studies that are being done about memory, and so I'm starting to workout more, take care of my body more, and do things a little differently, and also to continue working. I'm retired, but I said I don't want to be sedentary, so I picked up projects, and I'm working instead to stay busy and keep my mind active. But I am fearful of things that I've noticed about my short term memory and that fear is always there.