“Do you want to pull this out?” Grandma asked me on Thursday as she looked down at her feeding tube. I stared at her for a second before answering, dripping wet (I had just helped her wash her hair). I could not believe–at that time, I couldn’t– that she would ask that. Strange things like this started on Wednesday. Mom had gotten up at her usual time to give Grandma her medicine and food. After a can of food (the goal is four), Grandma told Mom that she was going to throw up. She never does, this is just her way of getting out of us feeding her. Mom got upset, since Grandma does this everyday. But what she doesn’t do is “lock” herself in her room, and never come out (I say lock because she closed her door. She never closes her door). And that was all she had.
Thursday started the same, with Mom giving Grandma her food and medicine. After that, Mom called for me to help her with her shower. No problem, I had done that once before. But what I hadn’t done before, was hear this question.
“Do I want to pull that out?” I asked, making sure I understood her (that’s getting harder to do these days). She nodded. “No” I answered slowly. “Does your mom?” she asked. This time, I didn’t hesitate, nor did I repeat it. “No” I answered again, quicker. “Do you?” I asked back. Grandma answered with, “I don’t know,” the only thing she ever says anymore.
You must know, the only way for Grandma to be able to live, is if we feed her through her tube. The ALS has made it so her throat can’t really work, no matter how hard she tries. Sure, she can eat yogurt (which is too sweet) or drink water (which she chokes on), but that won’t do a bit of good because she takes one bite or one sip, and she’s had enough. The ALS clinic suggested four cans because they knew–I’m pretty sure of it, since this is their profession–that wouldn’t only maintain her weight, but perhaps add some. One 8 oz can has 355 calories (and it tastes like milk after a bowl of Cheerios…not that I would know…). Alright back to the story.
Later on in the day, Grandma took a Pizza Roll off of my plate and ate half of it. Yes, this is strange. Every time we offer her something that we are eating, she says no. And yet today, she just takes one off of my plate. Strange.
Now wait a minute, it gets better. The nurse came and, after hearing about what had happened the past couple of days, she turns to Grandma and says, in a way not quite like this, “You’re going to die if you don’t eat.” Grandma nodded.
After the nurse left, she asked if she could try some yogurt. Too sweet. It’s always too sweet. When Grandma laid in bed, Mom and I headed downstairs. Mom was fooling around with the ceiling tiles, and I was in my room.
“What are you doing?” I heard my mom ask. I came out of my room and replied, “I’m in my bedroom.” But Mom wasn’t looking at me, she was looking up, towards the stairs. “I’m talking to Mom” she answered.
Stairs are a NO for Grandma! She can’t control her legs as well as she used to, and now Grandma was headed down them. We never thought she would do that, since she told us she was afraid of stairs, since the fall that put her in the hospital (at this rate, we should be afraid of her going outside, where she fell in the first place). Grandma made herself comfortable on the third step from the bottom, and watched Mom continue to mess with the tiles. I joined in. Mom was highly upset. Wouldn’t you be if someone you knew had a disease where the muscles in their legs could give out at any moment?
“Stacey!” Mom and I heard Grandma yell (that’s my mom). We, startled, stopped what we were doing and turned our attention to her. “Why do you want me to die?” she asked. We were perplexed at this question. I walked over to her so I could hear her better. Mom leaned against the ladder in the laundry room, directly across from where Grandma sat. “I can’t die yet” she said, after we didn’t give her an answer (we were speechless, I’ll have you know). “Why?” asked Mom. Now, this wasn’t her way of saying, “Why can’t you die yet?” as in she wants her to die, this was her way of knowing what is keeping Grandma alive. Her reason for living. “I have to stay alive for Matt.”
Ah, Matt, Mom’s brother–Mom’s schizophrenic brother. The brother that Mom has had to compete with all of her life. Even in Grandma’s dying days, Mom is still competing. You know, Mom told me earlier this month that she had to find out what, who, why Grandma was living for. I’m not so sure Mom expected this answer though. We had asked her before, but we never got it out of her. I guess she chose today to answer that burning question.
I looked over at Mom, who had her arm propped up on a step on the ladder, staring at Grandma. I can’t quite describe the look on my mother’s face, just picture a mix of anger and surprise, but with a hint on blankness. That’s it. (Mom says that’s about how it was).
“Are ya kidding me?!” Yep, that was her response. Rightly so, no blame here. I mean…really? Also, I don’t blame her for getting upset. I know, I know, it’s hard for you to understand this situation, but trust me, if you knew this family, you’d get it.
After Mother told Grandma how she felt about that answer, Grandma smiled at me, stood up, and started up the stairs (and almost tripped and fell, if I wasn’t there to help). Don’t you think that’s a little weird? Smiling when someone is upset? Not if that’s what they wanted. I’m not saying it is though…
After Grandma came down the stairs a second time, Mom and I decided to head upstairs. Grandma was still without food or water (she said she didn’t want any, and as her caretakers, we have to honor what she wants. She can still make decisions). We headed into the den and played a word game (with our own rules, which made what seemed to be a stressful game very relaxing). Grandma decided to join us. She didn’t engage in our game though. No, she decided to start one of her own.
She sat down in the unoccupied chair and started to cry, which looked forced. I can’t understand what she’s saying normally, so the added “tears” didn’t help. I couldn’t understand a thing. What I did get was “love you both.” I looked over at Mom who, upon hearing this, became sentimental. Grandma continued with, “It’s been two years. I didn’t know,” and “I wish the doctors tried harder.” Mom began to sob, but was able to let out, “Why did it have to come to this?” I turned to the computer and started to take notes on the event, when I heard Grandma speak clearly. I stopped taking notes and turned around. One minute I can’t understand anything, the next, clear as day. Heck, I had a harder time understand my own mother. Grandma said one more thing, clearly again, before standing up and walking out of the room. Strange, after Mom blows up about Grandma living for Matt, Grandma leaves. After Mom sobs when she hears Grandma is sorry, she leaves.
This may not sound strange to you, but I have heard stories about life with this woman from someone who lived under the same roof as her. This isn’t strange, this is what my mother grew up with. This isn’t strange, this is life. Mom’s life. I have stepped into my mother’s past. Too bad I had to bring Mom along to relive it.
It may be the lack of water talking, it may be Grandma’s old age, the dementia, the ALS. Who knows? But my mother says this is nothing new to her. This is normal.
This is crazy.
(I wrote all of that Thursday night. Friday morning, Mom and Grandma headed out to the doctor’s appointment, while I stayed at home to make sure the technician came out to hook up our cable and internet. Yes, two months later, we now have internet. Mom walked through the door while I was watching t.v. I heard the garage door, but it didn’t register. I went over to greet her and noticed that upon her face was an expression of…well, confusion and calm. I had figured Grandma had said something to upset her, since that had been happening quite frequently. Something happened and Mom made the comment of us not living here much longer. Oh great, I thought, Grandma said she doesn’t want us here. No, on the contrary, she said she didn’t want to be here anymore. While at the doctors, Grandma had decided that she did not want any more tube feedings. Which comes down to, she had chosen death. And not just death, death in a week. She had decided to die of starvation and dehydration. You can live for about 30-40 days without food, if you stay hydrated. But you can only live 3-5 days without water. And like I said before, since Grandma can’t swallow very well, it’s only a matter of time.
When Mom and I told relatives and friends, they didn’t really have much to say. Some were shocked, while some asked if we could blame her (Grandma). For two years, doctor upon doctor could not tell her what was wrong with her. It took a neurologist, who didn’t even look at her MRI, to tell her what she had. All he did was hear her speak. No, we can’t blame her for making this decision.
The question now is: what are we going to do? Mom and I, after Grandma dies. We can’t stay here. We don’t have money, we don’t have jobs. We can’t get jobs and stay out here, that would be a waste of time. I got my driving permit on Wednesday, so I will be driving soon, but that adds another tank of gas. We have to move again, we have to get jobs. I quit school to focus on writing, I got a job to keep myself busy. The job got in the way of my writing, and I hated it. That’s going to happen again. I guess I better get started on this book, huh? Let’s see if I can finish it in a week…
And so, the journey continues on for another how many days. Days, not months. Grandma is disconnecting from us, which is natural for someone who has just realized they’re going to die. But it’s hard. I’m not going to lie, this part of the journey is hard. We thought we had time. We thought we had so much more time.
Communicate with each other. With your voices. Never take it for granted. Talk to each other, share your feelings, when you know they can fully understand you, and can fully communicate back.
And don’t take advantage of your mother. She really won’t be around forever.)