Take Back Control

Grandma “fell asleep” at 5:30pm on Thursday, the 19th. On Saturday, at 8:30am, Mom found Grandma laying on the floor next to her bed. She slept for 39 hours. After that 39 hours, Grandma can no longer talk. She can grunt, but that’s all the sound that comes out of her mouth (that and heavy breathing). She can barely walk. Before Thursday, at least she could walk to the kitchen without having to hold on to anything. Now, it’s hard for her to even stand.  She knows we’re there, but sometimes I wonder if she realizes that. We go in and hold her hand and talk to her, so at least she can hear us. And she holds our hands. She’s still got quite a bit of strength in those skeleton hands. And even though I said she can barely walk, that doesn’t mean that she doesn’t try. Grandma sat at the edge of her bed when I came in to see her. She pointed to the door, and took my hand. I helped her to the kitchen, thinking she was going to sit down at the table. No, she wanted to go for a walk. We took a walk around the kitchen and down the hallway back to her room. I was surprised she managed to do even that, with how weak she is. She hasn’t had food or water since Friday, the first full day she slept. Mom has tried to give her some water, but Grandma just spits it out.

A hospice nurse came out on Monday to check up on Grandma. Her temperature was 97.7, her blood pressure was good, her heart and lungs were good. The nurse said that Grandma, in this state, could stay here for up to two weeks. Mom and I were surprised, but, we’ll take it.

On Tuesday, Mom and I were surprised to hear the door bell. “Oh Lord, who is it now?” I asked. It was a neighbor. She asked how Grandma was and I told her she: can’t talk, can hardly walk, stays in bed, doesn’t know who anyone is. I did invite her to come in though, I couldn’t just tell her to go away. She came in and started talking to Grandma, asking her if she knew who she was, how she was doing, you know, the normal visitor questions. Grandma just laid there, grunting. She continued to ask her questions, and Mom, who was standing was the door at this point, just shook her head.

“She’s been sleeping a lot?” she asked. “No,” Mom answered as she sat down in the room, “she’s been awake and anxious.” “How does she go to the bathroom?” “She walks.” “I was told she couldn’t walk” the visitor responded (I said she could hardly walk). “Does she have many visitors?” “No, none.” “Well, it would help her” they said. Mom and I were confused. “It would help her…pass on to the other side?” Mom asked. “No, it would help her to know that she’s loved.” Huh, you don’t think she knows that? We’re here, aren’t we? “Do you take her outside?” “No.” No, we don’t. When Grandma could talk, she said she was afraid to go outside, because that’s where she fell. That’s where this whole thing started. We are still honoring that wish. “You should take her outside, it’s a beautiful day.” She looked at Grandma. “You’re skinny” she said. “That’s how my husband was.” She looked at us. “Do you talk to her?” the visitor asked. “Do you let her know you’re here?” Do we talk to her? Do we, her daughter and granddaughter, talk to her? Mom and I stared at her. Mom laughed. “Of course we talk to her” she responded. “You should read to her. You should take her outside. You should play music. You should let her know you’re here.”  After she was done telling us all of things we should be doing, the visitor came around the bed, and stood in front of us. The very last thing she said was, “Don’t just sit there, get up and take care of her.”

Mom and I stared at her. That was rude, I thought. In the thirty seconds of silence that followed, I knew something was going to happen. I was stunned, I was shocked, I was angry. Mom threw up her hands, stood up and walked out. “Ok, you can go now.” I stood up too and walked to the door, with the visitor right behind me.

“I don’t know what Grandma has told you about us when we lived here years ago” I began. “That’s in the past, what matters is right now” she said. “Everyone is treating us like we’re bad people. It’s not like that.” “That doesn’t matter” she replied again, but her tone was not sincere. Her tone was condescending, like it did matter, like she was in control. She had gotten a rise out of Mom, and she knew that. She was in control. “Don’t you dare come into our house and tell us that we’re not taking care of her” I told her.  I was nervous, I never stand up for myself, but I had to, for my mother. “I never said that,” they replied, “but there’s more than what you’re doing.”

This visitor had to take care of her husband, but I highly doubt…nay, I know he didn’t have ALS. I don’t know how old he was or is, that doesn’t matter. But my God, do not come into our house, and tell us that we’re not staying up until 4 in the morning to check in on her. Do not tell us that we’re not sleeping in the living room so we can hear her better. Do not tell us that we’re not walking her to the bathroom, and helping her up off the toilet, and cleaning up her pee when she doesn’t make it. Do not tell me that we’re not going in there every half an hour, holding her hand, saying hello and that we’re here. Don’t you dare come into our house and demand control, because you will not get it.

On Wednesday, Mom and I went to an ALS meeting, where I met a couple of people with ALS.  People definitely look at this disease differently from one another.  It was very interesting to see how other people are handling it, the patients and the caretakers.

Grandma has been sleeping on the couch lately, which is fine for us because she’s closer, we can hear her better, and she can’t get up as easily (she can’t randomly get up and start roaming around).  A nurse came to give her a bath, so she put Grandma in her bed.  She stayed there for a while.  Later one she had her door closed, and when I opened it to check on her, she wasn’t there.  I could hear her, so I checked the other side of the bed.  She wasn’t there either, nor was she in the bathroom or the closet.  She was in a chair in the living room.  I moved her back to the couch.

It’s been a very eventful week.  I can’t believe September is almost over.  Grandma is getting weaker, but I think she’ll make it to October.  Just a couple more days, Grandma.

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