Sunday, February 5th, 2012
10:04 PM
Wow, I haven't written in about ten months! Right now, mom and I are watching the movie E.T. It's kind of a strange moment because I likely last watched the movie here with mom in this same basement, except I was a small child who depended on her to meet all my needs. Now she has to depend on her children to meet all her needs. In December, I was reading my journal entry from the prior year and noticed that mom's illness really hadn't progressed as much as I'd thought. This realization was really comforting. I had thought that Christmas 2010 would be mom's last coherent year, but she hung in there for another year. This last Christmas, she probably had no idea why everyone was at her house and what we were celebrating, but she was able to open her presents and enjoy them, as well as enjoying everyone's company. I'm not going to make a prediction as to whether she'll be able to understand and enjoy Christmas next year because her illness has been so unpredictable.
Now, only a little over a month since Christmas, I can tell that mom's really had decline in her functioning since then. She seems to be the same for long periods of time, and then we lose some of her suddenly. Right now, thankfully, she still knows who everyone is. But she has no idea how to do much of anything. Even if I verbally tell her what she needs to do, she'll either do the entirely wrong thing or just stare at me blankly. Things that are instinctive, such as waking up, going to the restroom, and getting something to eat, don't cross her mind at all. I actually wonder what her day would look like if she didn't have people to guide her. She would probably wander around the house, use the restroom on herself all day long, and forget to eat.
For instance, just a few minutes ago, she was eating a sucker. When she was finished, she threw the stick in the litter box. I don't know if she actually thought the litter box was the garbage can or if she was aiming for the garbage can (which is next to the litter box). I said to her, "Mom, that's not the garbage can. That's the litter box. The garbage can is the white thing next to it." She got up and walked in that direction. I could tell she was confused already. I said, "Mom, take the stick out of the litter box..." (Normally I'd say, "Mom, take the stick out of the litter box and put it in the garbage can," but she can't understand multiple-step instructions. So I give her one instruction at a time. But now, she actually gets confused on single-step instructions, too.) After I asked her to do that, she started taking the garbage bag out of the can. I said, "No, mom, the stick that's in the litter box." She looked all around the room, unable to figure out what I was talking about. I said, "It's okay, mom. I'll get it. You sit down and relax."
One really sad and frustrating thing is that she has no ability to do any of her own hygiene tasks any longer. I give her a shower every Saturday. It's to the point that I can't even tell her, "Wash your face. Now wash your stomach," because she has no idea what those instructions mean. Even if I show her by demonstrating on myself, she doesn't really get it. So I got a loofah for her that's on the end of a stick. I scrub her down every week with the loofah. And then I give her a wash cloth and let her wash her crotch and butt herself. But she doesn't actually understand when I tell her to wash her crotch, so I end up saying it a dozen different ways ("Wash your crotch," "Wash between your legs," "Wash down here") until she finally figures it out. When she goes #2, she doesn't know to wipe herself. We'd literally need to have someone watching her like a hawk 24 hours a day in order to ensure that she's keeping herself clean. She doesn't even understand that it's not appropriate to touch poop with her bare hands. I'm just wondering if it's an accepted thing in our society for elderly people to not be very clean. Obviously, if my mom is struggling with these things, other elderly people must be, as well.
I think my way of coping with this has been to become a complete control freak. I keep trying to research ways to help with some of her symptoms. I had found an article, saying that melatonin helps regulate sleep in people with Alzheimer's. I checked with her doctor to make sure it would be okay to start her on it. Then I started her on 3 mg per night. It turned out that it made her completely tired all the time and even more confused. So Di and I made the choice to take her off of it after only a week. Then I was talking with my coworker, who watched a video about a man who had Alzheimer's whose wife began giving him coconut oil; it turned out that he was able to get a large amount of his cognitive functioning back. After talking with her, I immediately began thinking of how I can start incorporating coconut oil into her diet. Another obsessive tendency I've developed is that I keep cleaning and redecorating her living area over and over again. I also make sure she's dressed very nicely and that her hair and make up look beautiful. About a month ago, we hired a caregiver to help her wake up and get ready every morning and get to the senior center. I noticed the other day that mom wasn't wearing any make up. I felt myself freaking out, thinking, "I trained the caregiver on the very first day and made sure I showed her how to put mom's make up on and stressed to her how important it is for mom to look nice." I told my sister, Rose, about this, hoping she might talk to her. (Rose was the one who connected mom with the woman.) I saw Rose yesterday at the hair salon where she works, and she told me that she talked to mom's caregiver and told her how much we appreciate everything she's done to help with mom. She said that the caregiver talked about how much she enjoys her time with mom. Rose said she didn't mention the make up issue and said, "Jeannie, it's really okay. It's not that big of a deal." I then began crying in the middle of the salon. I realized that nothing I can do...no amount of cleaning or decorating or vitamins or coconut oil or pretty hair and clothes and make up...nothing is going to stop this disease. Nothing is going to stop me from losing my mom. This realization made me feel hopeless and miserable.
I can't drive myself crazy with all of this. This is really a situation that I need to surrender over to God. When I feel myself going into crazy control mode, it's probably a good indication that I am having a very strong feeling that I need to process and release. I have gotten into the habit of pushing my negative emotions away and not dealing with them. (It's actually subconscious. I wonder if I've always done this or if it's a more recent thing.) Most of the time I have myself convinced that I feel perfectly happy and content, until I suddenly start sobbing about something that I was supposedly "okay" with. I think it helps me the most when I talk with Paul and with my family about how I'm feeling. That causes me to allow the pain to surface.
Right now mom is falling asleep and keeps talking in her sleep. She never used to do this. Alzheimer's is so weird.
Anyway, I think I've covered just about everything that's going on both in my life with mom and in my heart. I will do my best not to let ten months go by before my next post!
Now, only a little over a month since Christmas, I can tell that mom's really had decline in her functioning since then. She seems to be the same for long periods of time, and then we lose some of her suddenly. Right now, thankfully, she still knows who everyone is. But she has no idea how to do much of anything. Even if I verbally tell her what she needs to do, she'll either do the entirely wrong thing or just stare at me blankly. Things that are instinctive, such as waking up, going to the restroom, and getting something to eat, don't cross her mind at all. I actually wonder what her day would look like if she didn't have people to guide her. She would probably wander around the house, use the restroom on herself all day long, and forget to eat.
For instance, just a few minutes ago, she was eating a sucker. When she was finished, she threw the stick in the litter box. I don't know if she actually thought the litter box was the garbage can or if she was aiming for the garbage can (which is next to the litter box). I said to her, "Mom, that's not the garbage can. That's the litter box. The garbage can is the white thing next to it." She got up and walked in that direction. I could tell she was confused already. I said, "Mom, take the stick out of the litter box..." (Normally I'd say, "Mom, take the stick out of the litter box and put it in the garbage can," but she can't understand multiple-step instructions. So I give her one instruction at a time. But now, she actually gets confused on single-step instructions, too.) After I asked her to do that, she started taking the garbage bag out of the can. I said, "No, mom, the stick that's in the litter box." She looked all around the room, unable to figure out what I was talking about. I said, "It's okay, mom. I'll get it. You sit down and relax."
One really sad and frustrating thing is that she has no ability to do any of her own hygiene tasks any longer. I give her a shower every Saturday. It's to the point that I can't even tell her, "Wash your face. Now wash your stomach," because she has no idea what those instructions mean. Even if I show her by demonstrating on myself, she doesn't really get it. So I got a loofah for her that's on the end of a stick. I scrub her down every week with the loofah. And then I give her a wash cloth and let her wash her crotch and butt herself. But she doesn't actually understand when I tell her to wash her crotch, so I end up saying it a dozen different ways ("Wash your crotch," "Wash between your legs," "Wash down here") until she finally figures it out. When she goes #2, she doesn't know to wipe herself. We'd literally need to have someone watching her like a hawk 24 hours a day in order to ensure that she's keeping herself clean. She doesn't even understand that it's not appropriate to touch poop with her bare hands. I'm just wondering if it's an accepted thing in our society for elderly people to not be very clean. Obviously, if my mom is struggling with these things, other elderly people must be, as well.
I think my way of coping with this has been to become a complete control freak. I keep trying to research ways to help with some of her symptoms. I had found an article, saying that melatonin helps regulate sleep in people with Alzheimer's. I checked with her doctor to make sure it would be okay to start her on it. Then I started her on 3 mg per night. It turned out that it made her completely tired all the time and even more confused. So Di and I made the choice to take her off of it after only a week. Then I was talking with my coworker, who watched a video about a man who had Alzheimer's whose wife began giving him coconut oil; it turned out that he was able to get a large amount of his cognitive functioning back. After talking with her, I immediately began thinking of how I can start incorporating coconut oil into her diet. Another obsessive tendency I've developed is that I keep cleaning and redecorating her living area over and over again. I also make sure she's dressed very nicely and that her hair and make up look beautiful. About a month ago, we hired a caregiver to help her wake up and get ready every morning and get to the senior center. I noticed the other day that mom wasn't wearing any make up. I felt myself freaking out, thinking, "I trained the caregiver on the very first day and made sure I showed her how to put mom's make up on and stressed to her how important it is for mom to look nice." I told my sister, Rose, about this, hoping she might talk to her. (Rose was the one who connected mom with the woman.) I saw Rose yesterday at the hair salon where she works, and she told me that she talked to mom's caregiver and told her how much we appreciate everything she's done to help with mom. She said that the caregiver talked about how much she enjoys her time with mom. Rose said she didn't mention the make up issue and said, "Jeannie, it's really okay. It's not that big of a deal." I then began crying in the middle of the salon. I realized that nothing I can do...no amount of cleaning or decorating or vitamins or coconut oil or pretty hair and clothes and make up...nothing is going to stop this disease. Nothing is going to stop me from losing my mom. This realization made me feel hopeless and miserable.
I can't drive myself crazy with all of this. This is really a situation that I need to surrender over to God. When I feel myself going into crazy control mode, it's probably a good indication that I am having a very strong feeling that I need to process and release. I have gotten into the habit of pushing my negative emotions away and not dealing with them. (It's actually subconscious. I wonder if I've always done this or if it's a more recent thing.) Most of the time I have myself convinced that I feel perfectly happy and content, until I suddenly start sobbing about something that I was supposedly "okay" with. I think it helps me the most when I talk with Paul and with my family about how I'm feeling. That causes me to allow the pain to surface.
Right now mom is falling asleep and keeps talking in her sleep. She never used to do this. Alzheimer's is so weird.
Anyway, I think I've covered just about everything that's going on both in my life with mom and in my heart. I will do my best not to let ten months go by before my next post!
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