Sunday, August 4, 2013

The Nightmare That Doesn’t End


Wednesday, July 31, 2013

Around 2pm I went to my Mom’s to take care of her for three days so that my Dad could work out of town. I massaged her feet, refilled her water cup, cleaned, did laundry, etc.

I’m scared to feed her because I’m afraid of her choking. I don’t want to be the one responsible for her death if I give her too big of a bite and she chokes. The nurses say there’s nothing anyone can do if she chokes—they just have to let her die. She is completely paralyzed other than her her neck and head. It’s more and more difficult for her to talk. When she talks, she sounds just like the Dinosaur in the Disney movie “Meet the Robinsons”.

About 6:30 pm the nurse came. Sundays and Wednesdays are BM days. Since my mom can’t go to the bathroom on her own, she has to have something to help it along. It’s pretty much an all-day event, so she stays in her bed on those days. The nurse came and checked her diaper. We had to roll her on her side, then the nurse would clean it up, then we’d roll her on her other side, and the nurse would clean up that side. Then she’d check to see if she had any more that needed to come out. Sure enough, she did, so as my mom was on her side, she had to push and push and push. It reminded me of having a baby. It took everything my mom had just to push a little bit. So then the nurse would clean her up and check her again, then she’d push and push and push, and so on, until about 10pm when she was finally finished and cleaned up thoroughly and ready for bed.

She has an adjustable hospital bed and has it adjusted to sit her up slightly to help her breath and so she doesn’t choke on her saliva. She has pillows on each side of her arm so her arms are at her side, then she has what the nurse calls “paddles” that are shaped and padded for her hands to rest on, strapped on, and padding put between her thumb and index finger. Her fans and air conditioning are set for her comfort. She has the Bible on CD that she listens to as she falls asleep. It was 11pm when I finally got into bed.

Thursday, August 1, 2013

At 1am I got up to give her her pills to help her with her leg cramps. This is my routine: Sit her up, give her water, give her pudding with her pills, let her drink some more, lay her back down, turn on her CD. If she needs the fans or temperature adjusted, I do that. Then I take the dog outside to let her go to the bathroom. Then I take my Sleep Essentials vitamin to help me get a good night sleep. Without them, I toss and turn all night and can’t sleep, then wake up feeling like I didn’t sleep at all.

Then at 7am, I get up and do the routine all over again with her morning pills. So around 7:30 I go back to sleep until 8:30 when I get up and get dressed and ready for the day. At 9am the morning nurse comes in, brushes her teeth and hair, washes her face, gets her makeup on, gets her dressed, etc. I helped her move her from the bed to the massage chair using a Lift. It was cool. I never saw anything like it. We put the sling under her, by rolling her one way, then the other, then hook it onto the lift. It lifts her up, then we roll it to the chair, then slowly put her down in her chair and remove the sling from under her. Then we put on her blanket, set up her “Boppy Pillow” that is a pillow that my aunt made for her that allows her arms to rest on it and hold onto her Sip-A-Yard sippy cup. The nurse feeds her breakfast and more pills. These pills are mostly to help with muscle spasms, cramps, and pain. By this time, it’s noon. She watches TV while I go clean, dishes, laundry, etc. I refill her water, change out her urine bag when needed, water her flowers, get the mail, do whatever she wants me to. I made Banana bread with chocolate chips on top. It was so yummy! My mom couldn’t have any because it was too hard for her to eat. She can only eat wet, soft food in small bites.

At 6:30 the evening nurse comes over to feed her dinner, give her her evening pills, brush her teeth, wash her face, get her ready for bed. Bedtime routine all over again.

Friday, August 2, 2013

Today my mom was nauseous and very tired. I tried to give her some salad, but she felt too nauseous. She took just a few bites. The nurse put some medicine on her belly that’s supposed to help with nausea. She was still nauseous, so we gave her some other stuff to swallow to help with it. It tastes so gross, my mom gagged and spit up about a bite’s worth of food. She didn’t want to eat any more. She just wanted to sleep. So I let her sleep while I did other things. My mom’s friend came over to massage her arms and hands. I visited my sister and got a call from my husband, saying that my mom never got her noon pills from the nurse. So I called the nurse and she went over it with me and I relayed it to my husband. I felt bad about leaving my mom, so I went back to the house. She was sleeping when I got there. When she woke up, she was hungry. I got her salad from earlier and she said it needed warmed up. So I heated it on the stove. It still wasn’t soft enough, so I heated it more. By the time she got her first meal that day, it 5pm. I felt so bad. At 6:30 my dad came home from where he was working, and the evening nurse came over. The nurse finished feeding her and took over the evening routine. I told the nurse that she was nauseous that morning and she told me it’s just part of the disease. Also, when I feed her, she bites down on the spoon and doesn’t let go. I have to be quick so she doesn’t have time to bite it. The nurse told me that it’s part of the disease also. Her body doesn’t know how to process it.

My mom was so tired. It was so hard to watch her. Her arms are completely limp. Her legs are so stiff, that you physically cannot bend her legs, no matter how hard you try, no matter how strong you are. She is in pain, her feet and fingers are curled up, she can’t move, she suffers from anxiety and fear, and she is just exhausted all the time. It was about 10pm when I finally got home that night.

Saturday, August 3, 2013

I visited mom for a short time. My dad was in the middle of feeding her. It was about 1pm. She was so hungry, she had been crying. I took over feeding her so that my dad could do other things. I refilled her water, adjusted the fan, etc. I put her makeup on. The nurse doesn’t come on Saturday, so that’s why she didn’t have makeup on. I brushed her hair and put a hairband on. Then I had to leave.

It was a huge eye-opener that first night to see that my mom goes through this 24/7. This is her life. I couldn’t help but cry. When I visit her, I help her, love on her, then I go home and get to live my life and forget about what my mom has to go through. I get to leave the nightmare. But my mom stays in the nightmare and doesn’t get to get out. I cried to God. Why doesn’t He heal her? Why is He allowing this to happen to her? I hated Him for it. Then I remembered a book I had read that taught about being in Heaven before you are born and accepting assignments on earth that you forget that you accepted them because it was before you were born, but it was for a reason. It wasn’t a Christian book at all, and it was just a theory or someone’s thought about it, but I relayed it as perhaps in order to get a good place in Heaven, you have to go through bad stuff. The worse stuff you go through, the better place in Heaven you get. If you just get an easy life on earth, you’re nothing but an ant in Heaven. That’s just a thought and it’s something that helps me get through it. Whether it’s true or not, I don’t care, it’s just something that allows me to not hate God. Maybe my mom is going to have some really important job in Heaven since she sacrificed herself on earth.