Tuesday, October 9, 2012

Spinning the Wheel

Being a caretaker to an Alzheimer's patient is a little like spinning the roulette wheel in the game of life. You never know what you're going to get. But today, I won. 

It's been a while since I've written about my mother and the disease that is taking her and some have asked for an update. In June, she was transferred to the locked down facility called Clare Bridge. She had been trying to leave the health center and, in fact, she did leave three times. People at the facility saw her leave and followed her to see where she would go and how she would react. The first time she got to a place where she was lost but she somehow found her way to the front desk, the main door of the entire facility. Let me explain. This place is huge. It is on 87 acres that consist of independent living, assisted living, a health center, and Clare Bridge- the locked down Alzheimer's unit. It also has ponds, walking trails, a historic cabin, and gardens. 
Imagine if you will, a resort for senior citizens.

All of this is sandwiched between two busy roads in Northern Indianapolis. There are many places she could go and get into trouble. In her defense, each time she strayed, she stayed on the sidewalks. The first time, as I said, she made it back to another door, the main door. She was flustered and confused, but Mildred, the keeper of the gates, knew my mom and made sure she got back to her living quarters okay. The second time she "took a walk, " she again was followed and did ok. The last time, she got completely turned around and made it to the end of a street to a stop sign connecting to a busy road. The staff following her immediately helped her. It was the last straw. She had to go to Clare Bridge and it had to be today. 

Today” was in June, and I happened to be in Colorado visiting friends. My wonderful husband, Jason, and my mother-in-law, Liz, took on the task of helping her move and making sure she was emotionally ok with what was transpiring. That evening Jason called me in Colorado to update me on the situation. He said that she was moved and the instant she moved, she didn't realize she had lived anywhere else. As depressing as that notion was, that she had no recollection of having lived anywhere else, it was actually a relief. It meant the transition would be a lot easier than we thought. 

June and July passed with few problems, but then things started to disintegrate. She was irritated. She still wanted to be able to walk outside, but on her own, which really she had not been able to do for years. She didn't want to participate in planned activities. Trying to explain to her that the activities would be fun and that she should participate was like telling a child that they should take those piano lessons they hate. She was having none of it. 

By the end of July, she was downright pissed. She was waking up at night. She was pacing. She was always agitated. I would get calls that she was mad, she wanted to leave and was getting aggressive. My mom who hardly ever raised her voice, never cursed, never raised a hand to anyone was fighting the staff. Literally fighting, yelling, pushing, hitting.

I remember one call in particular. The staff was right in the middle of a situation with her and was hoping that I could help. I was driving home from a visit to Virginia and Maryland and was in Ohio when I saw that a call was coming in from Clare Bridge. I always get a sinking feeling when I see the number pop up on the screen. The "oh, no. what’s wrong? kind of feeling." The nurse called and said, "Molly, I'm calling about your Mom. She's really mad and agitated."

"What's wrong? What set her off?" I ask. 

"Well, she says she wants to leave, she has to get out. She has her make-up, toothpaste and a roll of toilet paper and she won't leave the door. Gordon is trying to calm her down, but she is yelling and pushing him."

I laugh, "Well, sounds like she is in survival mode. At least she sort of knows what she would need." What could I say? It initially struck me as funny and there was not much I could do driving on 70 West a couple of hundred miles from home. The nurse laughed and then asked if I'd talk to her. Apparently she also was saying she was waiting for me. 

I hear her call my mom to the phone.

"Yes?!" I hear my Mom's voice so riddled with anger, it is scary. Like the voice of a stranger. A voice I have never heard come from my Mom's lips. 

"Mom, it's Molly, your daughter. What's wrong?" I ask.

"I have I get out of here. They are telling me I can't leave, but I am. I am waiting for you because there is no other choice. I am not staying here."

"Mom, I need you to calm down and listen. I can't be there right now. I'm not in town." I try to explain. I speak clearly and in a tone like I am speaking with a child. "I can come see you tomorrow, but I need you to listen to the nurse. You have to behave. You cannot leave. You live there now. Ok? I promise that I will be there tomorrow."

"FINE" she screams and I hear the phone thrown down and bang onto the counter. Then she starts to rant. "I can't believe you called her! She is going to come here and kill me. What's the point?! I should just be killed!"


The nurse comes back on and tries to reassure me that they will take care of her and not to worry. She thanks me for talking to her. I tell her to call me as much as needed and that I'd be there tomorrow.

Not to worry? A stranger has possessed my mother. A mean, abusive, unruly woman is in place of the loving woman I always knew and I am not to worry? Right.

Tomorrow came and I headed into Clare Bridge with all sorts of stories swirling in my head. I was scared to go in knowing the state she was in yesterday. I hoped that it didn’t become an emotional or physical fiasco. I walk in, see her and say, "Hi Mom, it's Molly, your daughter. How are you doing today?"

"Great! It's so nice to see you."

No memory of yesterday's dramatics. None. A blank slate.

Within a week, she was transferred to a geriatric specialty program at a small community hospital. She ended up staying there for two weeks to regulate her medication and behavior. She had experimental medications, one-on-one attention, counseling and activities, and visits from me. The doctors and staff there were again saying what I am accustomed to hearing, "Your mom is so beautiful. She is the sweetest woman. We wish she could stay here with us."

It worked. She no longer tries to leave. She is the sweet soul she always has been. She participates in activities. And now she also "works" there at Clare Bridge.

She has been a caretaker her entire life- an older sister, a mom, a teacher, a counselor, a friend. She now believes that the other patients, the people she lives with, are babies and children. That's what her brain perceives. She oversees the patients, the “children.” She is there to take care of them, and just as being a caretaker for her can be overwhelming to me, it is to her as well. She worries about the "children". Why isn't anyone coming to get them? Where are their parents? She cries for them. She talks to the staff about them. She tucks them in and talks with them. She loves them as best as she can.

Her job is important to her. In her own way, she tells me about the people that are misbehaving. She takes me on a tour around the garden and tells me about how hard they've worked to get it like this- so lovely. She counsels them. In her reality, she must keep them safe. She must love them and care for them. 

She is in her her own world, her own reality, but to her it makes sense. It can be stressful at times, but she believes she is bettering these people's lives. She is helping them. And I believe she is. Her sweet and compassionate soul is a joy to have around again...finally. 

By the luck of the draw, the spin of the wheel, today was a good day. A day of disjointed conversations. A day of singing to music with the warmth of the sun beating in on us through the sun roof. Enjoying the beautiful weather and the turning leaves. A day of enjoying my Mom's peaceful soul. A perfect companion. 

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