Expectations

I found this poem while doing research on Alzheimer's. I have had some rough days since I've been back from Texas and was trying to find some ideas that might help. Instead I found a poem that put it all in perspective...again.

Do not ask me to remember.
Don't try to make me understand.
Let me rest and know you're with me.
Kiss my cheek and hold my hand.

I'm confused beyond your concept.
I am sad and sick and lost.
All I know is that I need you
To be with me at all cost.

Do not lose you patience with me.
Do not scold or curse or cry.
I can't help the way I'm acting,
Can't be different 'though I try.

Just remember that I need you,
That the best of me is gone.
Please don't fail to stand beside me,
Love me 'till my life is done.- Unknown

I just needed a reminder that "the best of my mom" is gone and will never be back. I needed a reminder that I can't try to reason with her...she has no reasoning skills left. At the beginning of this ordeal, I said she was like a 4 year old, just like Cabot. I was so wrong. She is nothing like Cabot. Cabot can be reasoned with, Cabot understands what you expect him to do, Cabot can purposely try your patience. Mom can't be reasoned with, she doesn't understand what you want her to do and she does try your patience, but not on purpose. I thought if I could treat her like a 4 year old, everything would be okay. That doesn't work at all. This Alzheimer's disease is cruel and sometimes unexplainable. So now, I have this poem on my mirror in the bathroom, on my refrigerator, on my sewing table. And when I forget that all she needs from me is love, I can read this poem again and again. I need to understand that I can have no expectations from her. But she deserves one expectation from me...just to love her. And I do.

No Sleep

Shortly after I thought Mom was asleep for the night, she woke up. I convinced her to take two Tylenol PM. She couldn't understand that she needed to swallow them and finally said to me, "Do you want me to make them disappear?" I said yes, so she took another drink and swallowed them. She laid back down for about 5 minutes and got up again. This time I took her in the living room, where she sit in her chair with the foot rest propped up so she couldn't get up, for two hours. Keep in mind, I started trying to get her in bed at around 6:30 pm. Now at 1:30 am she is still awake. I had to move the light by the chair...she kept trying to turn it on. Finally, I went in the kitchen, stuck another Lunesta in applesauce and gave it to her. Then I walked her back to bed, where at this time- 2 am- she is snoring...again. The first Lunesta I gave her was 8 hours ago! Obviously, those do not work or she needs a larger dose. Whatever. I do hope the new sleeping meds work. Tomorrow at this time I hope I am asleep. Because if I'm asleep, Mom's asleep. Which will make all of us happy!

These are trying times

I lost my "blog" for awhile...it disappeared from my dashboard. But what was once lost is now found! I have had a very trying evening again. I called the doctor's office early this morning, so he could call in a new script for sleeping pills for Mom, but that didn't happen until 6 pm, after the pharmacy closed. Real helpful, right? Anyway, Mom did take her pills tonight with no problem, but got stubborn shortly after, refusing to get her gown on, refusing to go to the bathroom, refusing everything! She was sitting on the bed and got up to get her nightgown, which she already had on, bent down to pick up a napkin from the floor and promptly fell over, hitting her mouth on a metal shelving unit. Thankfully she didn't bleed, but bruised her arm. After getting her back on the bed, she wanted to tell me that I boss her around too much. Duh! Anyway, after about 15-20 minutes of waiting for her to cooperate, she finally decided to lay down. She kissed me, told me she loved me and I left the room. Too bad it didn't end there. She has been up twice now, and is laying in there talking to whoever is in her room. She sees Barry every night (according to her and she also sees Gerald, who told her that the doctor didn't tell her she had to be in bed by a certain time!) I don't know what has caused this sudden behavior, except she does feel better, so she is her stubborn self and the doctor told me that I didn't need to give her one of her Alzheimer meds. I am starting her back on that tomorrow, along with the new pill the doctor called in. Maybe those two things together will make a difference. During the day, she is the sweetest little lady, but after 5:30 pm she changes so dramatically. I knew this wouldn't be easy, and it hasn't been, but it has been doable. These nights are making it hard. I really do want her to stay her through Christmas, but if the nights don't get better, she may be headed back to the nursing home. I knew from the beginning that this was temporary, but I sure wanted it to last longer than this. Barry and Carla are going to come out Monday around 5 or 6 to see what they can do. Maybe I just don't do something right. The good news right now is I hear her snoring on the baby monitor. There is no sound like it! It is good.

And it continues

The night didn't get much better. At midnight Mom was still awake and trying to get up. At one point, she unfastened the tabs on her underwear and took them off and threw them on the floor. (At least they were clean!) She told me she was waiting for Gerald. Up until then, I could not get her to take those stinkin' Tylenol. So I went in and got a Lunesta and told her Gerald wanted her to take that before he got there. She took it! Okay, maybe another deceptive way to get her to do something she doesn't want to do! Finally, around 3 am, she fell asleep enough that I got a couple hours of sleep. She was awake at 6:30 am! She was trying to take her underwear off again, so I used packing tape on them. Unique, huh? Anyway, I think she may be back to sleep, but who knows how long. I am hoping the home health aide comes today and I might be able to go downstairs and take a shower.

Rough Evening

I guess Mom probably senses something is different than it's been for a few days. I tried to get her to take her night pills,which she refused to take. Finally convinced her to take the "important" ones, but she refused to take the Tylenol PM. The doctor wasn't in today to call in a new script for sleeping pills so the nurse said not to give her the Lunesta, but to give her Tylenol PM. I tried to explain that to her after she refused them, but that just didn't work. You can't explain things like that to her. So now I think I am in for another sleepless night. She has no sleeping meds in her at all. I just sat at the kitchen table and cried. I keep saying I don't know how much longer I can do this. I don't want her not to get the care she needs just because I wanted to take care of her. I keep asking myself if I am doing the best thing for her. She is so easy to care for in the daytime, but turns into something else early evening. So now I am listening to her pray for her family, by name, making so much sense that it is scary. Alzheimer's is such a cruel disease. There is so much about it that is unexplainable. I hate the unknown. I want to know what I am up against. But I asked for this and I am going to try to tough it out. I don't believe for one second that it is going to get easier. It is only going to get harder and more frustrating. The few days I had away didn't really do me any good, because I saw what life was without taking care of Mom. I'm not ready to put her back in the nursing home yet. My goal was to try to keep her until after Christmas. I just wanted her here for the holidays one more time. Next Christmas, I don't think she will know anyone. Maybe, if the doctor can give her something to mellow her out in the early evening and a sleeping pill that doesn't cause vivid dreams, we'll have something to work with. I'll be calling the doctor in the morning. I don't want another evening like this one. Please pray for us.

Time Away

Last Friday Tim and I left for Texas. Diana came from Florida to stay with Mom while we were gone. We had a great time with the grandkids and our son and daughter-in-law. It had been awhile since I had been to church, so I really enjoyed being there for Homecoming! Saturday was a great day of singing, food and fellowship, then Sunday service was great with a dinner afterwards. It's a great church that Jeremy is serving at! But now it's back to reality! Diana left yesterday at around 2 pm. I think her and Mom had a good time...I don't know how much Mom will remember, but I'm sure Diana will remember it all! Mom had a restless night last night. Not sleeping much, even with the sleeping pill. I am giving the doctor a call today to ask about a different pill. I have read that Lunesta (the sleeping pill she is on now) causes vivid dreams. Well, she already sees and hears things that aren't there, so this pill may be causing her more trouble than it's worth. She is sleeping right now, after seeing cars coming at her and her bed being on fire! Never really a dull moment. I might take this opportunity to take a mini-nap. It could be a long day!

Where Have I Been?

We had a fairly good night last night after I finally got her convinced she was safe. Mom went to bed around 6 pm. She usually doesn't go right to sleep, but by the time Tim got home she was out! Tim had a couple of phone calls and talking quiet is not his "style." So Mom woke up. She could hear him talking and that confused her. I went in her room, where she was still laying in bed, but obviously searching for something with her hands. I asked what she was looking for and she said a flashlight. Anyway Tim came and talked to her for a couple of minutes and she finally went back to sleep. She slept all night. I went in to help her up for breakfast this morning and she was really confused. She asked me how my mother and dad were. So I asked her who I was. I was a cousin's girlfriend, a cousin, a sister, anyone but a daughter. Then I asked her if she had any children. Yes, but I can't think of them. So she thought for a minute and came up with our names. So then I said, I am Debbie. She looked at me and then responded, "Why do you look like that?" Well, of course, I figured okay, I have gained several pounds in the past 30 years, but my gut said that wasn't what she meant. I said, Mom, I am 55 years old. Do you know how old you are? She said no, and I told her she was 81. She just looked at me, so seriously, then said, Where have I been? I leaned over and hugged her, tears running down my face. I thought, Mom, you are still there and I don't think you are coming back. She was living in the past somewhere and I just don't know where. I still get glimpses of my mom, the mom I remember. But more and more, she is someone else, somewhere else. I just hope she's happy wherever she is.