Tuesday, December 28, 2010

I know I started this blog when my daddy was sick. Then it was my private blog, because I used his blog to keep people informed of his condition. Then when I got breast cancer, I was talked into making it public so that I could keep people informed of my condition and what I was going through. Well, now, I am going to use it for what I intended it to be, where I share what is on my mind, vent about whatever is going on in my life, or just document details that I want documented in writing somewhere. It may or may not be of any interest to anybody out there but me, but here goes.

The path I am currently walking is being the caregiver for my mom. She has Alzheimer's Disease. It is a hard disease to watch anyone go through, much less someone who is close to you, or at least used to be close to you. This disease has been termed the "long goodbye". People will tell you it is a disease that affects memory. But the ugly truth is, it is a disease that slowly but surely drives the person insane. It is so much more than a "memory issue". If all my momma did was repeat a question over and over, or tell me the same story over and over, that would be a welcome change to what is going on with my momma these days. We just celebrated Christmas, the day set aside to celebrate the birth of Jesus, our Lord and Saviour. As momma would open her gifts, she would put them in a large gift bag that was sitting there from someone else's gift. Later that evening, when she was getting ready to head to bed, she pulled that sack over to her chair a little closer and asked "what is in this bag?" As I pulled her gifts out to show her, "this is the box of candy Beck got you", and "this is the puzzle that Beck got you", and "this is the Circle the Word book and Snuggie that Kell got you" etc. , it was like Christmas all over again for her! She was all excited again! It was like this was the first time she had seen any of these gifts. When we are doing school at the table, mom will try and correct somebody and will read the numbers backwards or upside down (if they are on the other side of the table). For mom it will look like a 6 and to the child it is a 9, and she will tell them they are doing it wrong. Then the child will look at me, as if to say, "how am I supposed to respond to this situation??" I have told my kids "Grandma is always right, no matter what. Don't argue with her, it doesn't do anything but make her mad, so just agree, and move on." Mom has played dominoes all her life, she has taught all my kiddos how to play dominoes! But now, she doesn't remember the rules, and will play on any leg that she has a domino for. And she will get angry at anyone that plays on their own leg, if their play messes up her ability to play the only domino she had that she could have played! She will berate the child for messing up her chance to go out, because she could have played on that and now she can't and now she has to draw from the draw pile. Needless to say, we don't play dominoes very often anymore. And if we do, the kids know, we play by Grandma's rules, and Grandma always wins! My kids are getting to see a "Grandma" that is not the Grandma they have always known and loved. She will tell Emma Jean to go upstairs and go potty over and over, saying things like "your dancing, I know what that dance means, I used to have little girls, you get upstairs and go potty before you wee wee in your pants!" And Emma will go upstairs and go potty, or at least pretend to, and then come back downstairs, and five minutes later, momma will start again, "you need to go potty little girl before you wee wee in your pants." Emma will look at me with that pleading look, but will obediently go upstairs, go into the bathroom for a few minutes, then come back downstairs. After about the fifth time, she will begin to say "Grandma I don't need to go potty, I just went potty" and momma will get mad and say "you are not going to do what I say? Debra Faye, you need to intervene here, she is not doing what I am telling her to do". Kimberly, my 12 year old, has told me in private that she thinks Grandma just misses being a mom and telling someone what to do. Wow, how's that for wisdom from the mouth of a child? She is also losing the ability to use the right word in her thought process. Like instead of saying "bring the Pledge over here, I can see the dust on that TV cabinet", she will say, "bring the psssssshhhhsss stuff over here". If she can hear Adam's music, she will say "his level of hearing is high". Instead of "where is my trash can?", she will say "where is that thing you throw this kind of stuff into?" as she holds out her hand full of candy paper. But there are moments of clarity that pop up here and there, where my momma is once again....my momma! It is in those moments that you want to stop the world, stop whatever you are doing and chat with her about what is going on in your life. But as quickly as she appears, she is gone again. This really is the hardest part of this disease. The part where she doesn't think there is anything wrong with her, other than she is getting "old and forgetful". She is 73 years old. She is way too young to be this forgetful. No, this is not normal aging. But you can't tell her that either. The experts say we are not to tell them how bad they are, it will cause them to be stressed, or depressed. And the speed of progression of this disease is directly related to their anxiety or stress. If you can manage their anxiety, protect them from anything that causes them anxiety or stress, then you can slow down the progression. Every traumatic event could send them to a whole different level, a level that they will not recover from. The doctor says that when she declines, when she slips to a different level, that I am not to expect her to "come back" to the same level she was at before the trauma. That is so hard to accept.. And it is so hard to implement as well. This is my momma. In the past we were able to talk, have conversations about whatever was going on in my life, and she would give me some advice or at least a listening ear, some support. Not anymore. Recently, when she was complaining about a decision I had made, I gave her a frustrated answer like...."momma, I don't know the right thing to do in this situation, I just know that as a Christian, we should forgive, show love and move forward. I am open to any suggestions you have for a better way to handle this." She looked at me and for a minute, a moment of clarity, a brief glimpse of my momma appeared. She said, "well Debra Faye, you need to listen to the Lord then, because what I am thinking, and the advice I would give you is probably not very nice." I laughed out loud!! I tell you, on some days, she is there, spot on, and then other days she makes no sense at all, and nothing she says goes together, and it leaves you thinking "what was she trying to say to me??". There are days she is like an adult woman, and then there are days she is like a ten year old, trying to start a fight, being very antagonistic, trying to get someone, anyone, in trouble. I try and give her jobs that she can help me with, like setting the table, or folding the towels, or using the dust mop on the floors. She wants to do something to help. But if she sets the table, then she sets down and with a tone will say "someone gave me a small fork!" When one of my kids offered to take the small one and get her a larger one, she acted as if she was angry that they were trying to take her fork! I'm telling you, there are days that are just harder than others. My kids are being real troopers, but making memories with their Grandma, well, it is not exactly like that. I can see a couple of them starting to withdraw from Grandma. They don't want to come in and be in the same room with her, especially if it is on one of her bad days, and yes, they have learned to recognize the signs that this is indeed a "bad day". On those days, they stay in their rooms, do their school in their rooms, dodge Grandma at any cost. I find myself second guessing myself constantly, am I doing the right thing, taking care of my momma here in my home? Will this Grandma be the one they remember? Am I pushing the good memories of Grandma Adams completely out of their memories and replacing those memories with these feelings of fear and apprehension? I doubt that I will ever know if what I am doing is the perfect solution, but at this point, I doubt that I could do anything different. I can't put momma in a facility, when she doesn't think there is anything wrong with her. She will say "I am not there yet, I am not that bad yet". And the reality is, when we go and visit her friends that are in those facilities, she is worse than them mentally! Yet, there are so many sitting around in wheel chairs, in diapers, staring off into space, and yes, there is more to consider than her mental abilities, or lack thereof. When people spend their days in those situations, no wonder they give up, and cry, and want to die! What a way to spend your days. Where are these facilities that you see on TV, where the Senior Adults are having the time of their lives!? All I know is she is my momma, and I put her through all kinds of mess when I was a teenager, and so did my siblings. This is the time for me to rise up and call my momma blessed. This is the time for me to honor my parents, even if it is hard. It is a thank-less job. You don't get any thank yous, or any appreciation. You just do what needs to be done, what has to be done, "even if it is not fun, it still has to be done". Maybe I am teaching my kids that no matter what, no matter how hard it is, no matter how inconvenient it is in our lives, sacrifices have to be made to do the right thing. Because it helps us to focus on the fact that we should not be living this life for us. It ain't about us. Greater love hath no man than to lay down his life for another. Servant hood is caught, more than taught. In this society, serving others' needs above our own, is hard to find. And maybe, just maybe, as we do this very very hard thing, they will get it.


Sheila said...

I've typed and deleted several comments here. I guess I'm not sure what to say after reading this. Just know that it touched me deeply. You are an amazing lady Debi. God bless you.

Paula said...

Debi, your kids are learning that we take care of our own, and we honor our parents. You are showing them how to love.

Marcia Townsend said...

Debi- I have read and literally cried. Praying for continued strength and wisdom for not only you but your children.