Quick Clips From an Acadia-Sponsored Symposium at AAIC 2019: A Caregiver’s Story

MS. GREGORY: I’m just going to give you a little brief history about my mother’s treatment and about my role as her caregiver. Beginning in early 2016, we were beginning to realize—my family and I—that she was having some issues. She was having trouble balancing her checkbook, remembering how to get to places that were familiar to her, and we had planned a trip—she and I—to go abroad.

When we were abroad, I didn’t let her go out of the hotel without me, because she just really couldn’t remember what the name of the hotel, what direction she was going, and it became apparent that it was a bigger issue than just normal memory. So when we came back, I made a doctor’s appointment with her primary care physician so that she could go and be evaluated.

He met with us. He said that he felt that she should see a neurologist. So he referred us to a neurologist who said she had dementia. She then went through some testing to rule out any other issues for the dementia, and when we went back to see her in early 2017, she said it was Alzheimer’s dementia, and that diagnosis was devastating to all of us. But my mom had a lot of trouble even believing that it was true. But nonetheless, we were on the path.

Then she started telling me that there were children in our house and they were coming in, and at first I thought that she was telling me that these kids were in her house so that she could avoid telling me that she forgot to do something. Or she forgot where she put something. I also didn’t know if she was just having a memory, because I live close by and I have 4 children. They’re all grown now, but I didn’t know if she meant that they came in. I really didn’t know what was going on, but I wasn’t that concerned.

But as time went on, it became a little boy, and she began to be afraid of the little boy, and I tried to tell her, “You know, Mom, I don’t believe there’s a little boy,” and I’d say, “So don’t tell me about the little boy,” and it was kind of a joke. And she’d say, “Okay, that’s fine. I don’t know anything about the little boy is not real,” but I knew she believed it.

So then after she started talking about this little boy, it became much more difficult for me to tell her that this little boy wasn’t there, because he was becoming problematic. He started to actually steal things and do things that she didn’t like. And she was becoming fearful of him.

By the end of, like, 2017, she was becoming aggressive and she’d get agitated real easily, and the condition just seemed to me to be progressing further.

By the middle of 2018, it was becoming apparent that I really didn’t have a choice. They really needed to have someone in there. So for 6 weeks, I tried to have an aide come in. I needed to be there every single time, so my mother wouldn’t slam the door in her face or leave her sitting outside, and then I had to stay because my mother would have left the house and the aide would have been by there by herself.

So after 6 weeks, it kind of culminated in this event that my mom grabbed me and she said, “I’m going to shove you down the stairs, Linda. This is my house. Get out of here. You can’t tell me what to do!”

We quickly knew that we couldn’t handle this. So we decided that she would have to go into memory care. My sister brought her down, and we took her, and the first day went great. And they said to us, “Don’t worry: 3 weeks, about, she’ll make the adjustment.”

Well, the first day went okay—that we dropped her off, she stayed. Then the next day they called me, and they said to me, “You need to come over, because she’s extremely agitated. She is banging on people’s doors, screaming, ‘There’s a fire!’ People are getting very upset. She’s throwing cookies at the staff. She won’t let anyone near her.” And when I got there, I got off; it was like a war zone on the floor. I couldn’t even believe what a little woman could do this much disaster.

And so I was able to get her calmed down. She was happy to see me. She was like, “Thank God, you came. I knew you would come. I knew you would believe me.”

Next day they called me again, only this day I go in there and she was, like, “Where the hell have you been?” because she had no filters by now. She said to me, “You need to get me out of here. I am not staying here,” and she was trying to break picture frames with her hand and punch the window out. And they said to me, “If you stay with her, she can stay on the unit,” but already this was way beyond me being capable of helping her.

So at the point that I really knew I had to go, she grabbed me by the arm. She said, “I’d kill you. I would shoot you if I had a gun.” And I didn’t even know how to respond to that, because even though I knew it was the illness, she is still my mother, and when you’re the child, you still don’t expect that to come out of their mouth. So, from there, I took her to the ER, and she was admitted to a psychiatric hospital, where she stayed for 3 weeks, until they could get her settled.

At that point, when she was better, she came back to the memory care unit with 24-hour care. We had around-the-clock nursing for her until she got settled back in.

Additional Contributor(s)

Caregiver of her mother, who is living with Alzheimer's disease dementia and experiencing hallucinations and delusions

Faculty Insights

It is hard for people with dementia to lose the grip on their lives, to suffer loss of memory of important people and events. On top of that, these patients could experience symptoms of delusions or hallucinations, which may be frightening to them.

–Pierre N. Tariot, MD