Toto, We’re Not in Kansas Anymore

“I’ve been kidnapped and am being held prisoner in Staten Island.” This is the phone call I received from my mother toward the end of April. Things had been progressing relatively well with her physical therapy. She seemed to be motivated to work toward walking with the walker and, a couple of days before, had actually been able to start using a stationary bike. I started to become hopeful that we might be able to take her to the beach in June. During a couple of my visits she was willing to go to the coffee shop in the neighborhood for lunch in the wheelchair. There was a glimmer of hope that she was trying to resume some sort of normal life. The knot in my chest started to loosen up a bit.

Now her tone was tinged with panic. “A friend of Stephen’s (my cousin) took me here and won’t let me leave.” I pointed out that she was talking to me on her home phone number. She told me that they had taken the phone, too. I asked her if her aide was with her. Yes, they had taken her, too. I asked her to look around and tell me if her surroundings looked familiar. She said that they had managed to bring her belongings and recreate her room. “Can you get me out of here?” I said I’d work on it. You have to admit, she’s creative. The knot was back. I realized that the game had just changed.

This went on for a few days and then, suddenly, she was back home. Since that time, though kidnapping has not come up again, she has maintained that she is not at home most of the time. She believes that someone has gone to great trouble and expense to recreate her apartment with all of its furnishings in multiple locations. She tells me that it is too complicated to explain on the phone and that I’ll see when I visit. It is tricky to know how to respond. If you try to reason her through it, she eventually becomes agitated and it goes nowhere. If you play along, her logic becomes impossible to follow and you just have to change the subject. Every once in a while, when I explain that something is happening in her brain and ask her to trust me that she is home, even if it doesn’t seem like it, she does, but only for a few minutes.

Sadly, immediately after the initial event she stopped standing and walking. I’m not sure why, but the confusion led to her not wanting to get out of bed. A complete surrender. For a few months she was still willing to get out of bed and go to the kitchen in the wheelchair to eat. I insisted that she do so when I visited and would prepare dinner in the dining room, but she became less and less interested. I tried explaining that if she didn’t use her legs they would atrophy and become useless, but was just met with a lot of excuses. When I wasn’t there, she started to eat in the evening laying in bed with a dishtowel draped over her chest, sometimes being spoon fed by her aide. Her lack of will and capitulation to helplessness were appalling and scary.

I took her to a neurologist specializing in memory loss and had her tested. They said she was cognitively impaired but didn’t meet the threshold for Alzheimer’s. She was prescribed some medication, which might slow the progression of the condition, but nobody knows for sure.

Meanwhile, back at the ranch, there were days when she would insist that she be taken home and would have the aides pack up bags of her belongings. She would become extremely agitated and call me to demand that someone get her a car to go home. “This place is completely deserted. No one is around to ask any questions. I’ve got to get out of here. I just want to go home.” A couple of times, her aide dressed her took her downstairs, out the back door of the building, around the block and in the front door, where she greeted the doormen and went back upstairs believing that she had come home. Brilliant, but it only lasted a little while and after a couple of times she caught on and the jig was up. One day I received a call demanding, “You have to rent me a truck. How else am I going to get all of my things out of here?” Mostly, we just have to wait it out and let her believe that she is in one of “the other places.” We unpack the bags when she is sleeping or hide them in another room.

No, we are not in Kansas anymore. And it looks like we have left for good.

2 thoughts on “Toto, We’re Not in Kansas Anymore

  1. You write with such a fine and light touch about one of the most difficult things that we, as adult children, are dealing with. Well done.

    • Thanks, Penny. In the end, I think it is so important that we support one another to get through the craziness. Please share with anyone you know who might benefit.

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