In February of 2007, my dad was diagnosed with AML, Acute Myloid Leukemia. My dad went home to be with the Lord in December of 2007. My mom has been diagnosed as being in the early stage of Alzheimer's Disease. Recently, I have been diagnosed with Breast Cancer. Also, I am the mother of 10 children. They have proven to be my best support group. This is me, walking the path.....
Saturday, January 15, 2011
This morning, as I was whipping up some waffles and pancakes for my crew, I heard a "boom". I looked around the corner, into the dining room, and questioned Emma, my five year old. "Was that you?" "No, it came from Gramma"s room!" I ran into momma's addition, and as I rounded the corner, there was my momma, laying in the floor. She was trying to get up, she was not passed out, mind you, but was trying to roll over and pick herself up. I asked her what she was doing on the floor, and she went into her explanation. "I was getting up from the potty, and felt woozy, so I was trying to make it back to the bedroom I guess, and I just passed out before I got there?" It made sense to me, so I got some pillows from her bed and picked up her shoulders and put the pillows there so she could lay there a few minutes and get some color back into her face. In the meantime, I sent one of my kiddos to get Keith, who was down in his shop. Within minutes, here he came. We stood there and talked to her a few minutes, as she began to be momma, meaning she was cracking jokes trying to play down the serious moment. "I didn't like that bed, so I thought I would see if this floor was more comfortable for me and actually it is quite comfortable." After a few moments, of us picking at each other, she said she felt like she could get up and get back in her bed now. Keith picked her up, and let her stand there a few moments to get her bearings, and then as he was right there, we let her walk to her bed, which was only about 4 steps, but far enough for us to see if she was in any pain when she walked. She didn't wince or show any kind of pain whatsoever. Thank God, she did not hit the door frame or anything that could have made her bleed!! We talked a bit, as I sat on the chair there beside her bed, about what may have caused her to be light headed this morning. She ate three meals yesterday. She has a glass of some liquid, be it tea or water or coffee, being refilled all day. She did stay up later last nite than usual. She didn't go to bed until 9 o'clock! She got up and I walked her to her room last nite, gave her the night time pills, and then closed the doors to her part of the house, so she could "brush her teeth, wash her face and put on her night gown", her bedtime routine. Before we go to bed, we turn out all the lights, and open those french doors. One, so we can heat that part of the house with the wood heat, and it keeps her furnace from running so often, and two, so we can hear anything that might happen in the night if she comes out of her room. She did eat her breakfast, eventually. I gave her a plate of eggs and bacon and toast, as I do every morning. She ate it all! She is sleeping now. I have been in there several times to check on her and she is still propped up on her pillows, resting. I had planned on taking her to town to get her hair done today, for church tomorrow. I guess those plans might need to be postponed. I will play it by ear and see if she gets out of bed today, before I even consider taking her to church tomorrow. Thank you God for watching over my momma, even when she is here at my house.
Tuesday, January 4, 2011
Happy New Year! I have been doing a lot of thinking and pondering over this idea of "suffering for Christ". What does that mean exactly? I don't mean to sound all holier than thou, but if it is the Lord's will that I suffer, and it is the Lord's will that I suffer for a long time, am I suffering for Christ? And, even worse, does that mean I am supposed to be "glad in it"? Don't tell me you haven't given any of this any thought before, when your life was turned upside down. This has been an exceptionally hard time for our family. My son's wife left him, and says she wants a divorce. She left him several months ago, and took his son, my grandson. She is being "good about it". She lets Nick see Ruger anytime he wants. But that is not every night, which is what Nick really wants. While she is at the home of her mom and dad's house, she has people around her, someone to talk to. Nick sits at home, in an empty house. And with this season of our life, comes winter, which means, he is also sitting at home alone most of the days as well. Work is extremely slow, worse this year than any year I can remember. Nick needs the distraction of work, to give his mind something else to focus on besides how lonely he is without his family. Hard times are so much easier to get through when you have someone by your side, to go through those hard times with you. I have even been looking on Craig's List trying to find him a job! A different job, one that perhaps is not so weather related? I asked him if he wanted to go to school, and he said no, he felt like work would pick up and if he could just make it through the next couple of months, he would be fine. His wife, has filled out all the paper work needed for her to go to school. She is a "single mom", so therefore, the government is picking up the tab, she is going to school on government grants. And yea, if Ruger gets sick, or she gets sick, again, she is a "single mom", so you guessed it, the government will pick up the tab. This society is set up to reward divorce. What a huge carrot that is to dangle in front of young women these days. If you divorce your husband, your money problems will be over?? We will take care of you medically, and you can go to college for free. I know this is a real hot topic for both sides of the fence. I know people that actually need the government to help them, since they are single moms who could not make it without the government helping them. There is just no good answers here. I just know that society in general, our tax breaks in general, reward those that choose to walk away from their marriage. There is way more support out there for single moms. Where is the help for the single dads? O.K., I need to move on to a different subject.
Mom has been doing well. Even my kids have noticed that she has been more "settled", and not nearly as irritated. Woot! Woot! Thanks for the prayers people! Of course, we have not been going and doing very much. As long as momma stays pretty close to her routine, she is easy to get along with, she is an easy keeper, LOL. And maybe it has something to do with her sleeping schedule? If she goes to bed early every night, like say 6, she sleeps until 9 or so, she wakes up in a good mood. Her closet fell down on Christmas morning. We fixed it that morning, with a temporary fix. Yesterday, we picked up one of those closet organizers with the wire shelving and put it in for her. The whole time we were in there putting that together, she was asking why we were doing that, she wasn't aware that the closet rod broke, and who broke it, and it wasn't her that broke it, etc. Oh well, we are getting used to that kind of behaviour. The things she does remember and the things she doesn't remember still amazes me. She does frequently get her stories mixed up, the details from a story from years ago, mixed in with a recent story is not uncommon. As we drive past the small church next to the interstate 55, she starts to tell me a story, "I never pass this church without thinking about your daddy and about Bro. Godair, and how he wanted your daddy to fill his pulpit, but your daddy never got the chance. I wonder if Bro. Godair is still the pastor there." I am pretty sure that Bro. Godair pastored a church down around Portageville, where I graduated high school. Or, as we pass a restaurant, she will say, "we used to go to that restaurant with another couple every Friday night, and then go home and play dominoes with them every Friday night". The restaurant we are passing is always different, but the story is always the same. Today, she picked up Kim's Bible, and opened it up and said "Look at this! I have never heard of this! You have heard of the New Testament? This is the Old Testament!" I nearly choked on my coffee!! Yesterday, she looked at her jacket and said, "this is the first time I have worn this jacket this year. I haven't worn it in a long time." I said, "well, momma, it is the first time you have worn it this year because it is January 3rd, 2011!" She laughed, and the moment passed. Never mind the fact that she has worn it to church the past two Sunday's. Life is sure interesting living with an Alzheimer's patient. Like one lady said, "you've seen one Alzheimer's patient, you've seen ONE Alzheimer's patient". Every one of them is different, yet every one of them have some common ground. There are similarities in all Alzheimer's patients, yet each and every one of them travel this path at a different speed.
My window of opportunity has closed at this point, so I will write about my doctor's appointment today, later. Perhaps tomorrow? Bottom line, I am healing good and it is time to schedule Phase II. My surgery was scheduled for February 2nd. Report to the hospital at 6:15am. Plan to be in the hospital 2-3 days, perhaps one drain. Here we go again......ready or not.
Mom has been doing well. Even my kids have noticed that she has been more "settled", and not nearly as irritated. Woot! Woot! Thanks for the prayers people! Of course, we have not been going and doing very much. As long as momma stays pretty close to her routine, she is easy to get along with, she is an easy keeper, LOL. And maybe it has something to do with her sleeping schedule? If she goes to bed early every night, like say 6, she sleeps until 9 or so, she wakes up in a good mood. Her closet fell down on Christmas morning. We fixed it that morning, with a temporary fix. Yesterday, we picked up one of those closet organizers with the wire shelving and put it in for her. The whole time we were in there putting that together, she was asking why we were doing that, she wasn't aware that the closet rod broke, and who broke it, and it wasn't her that broke it, etc. Oh well, we are getting used to that kind of behaviour. The things she does remember and the things she doesn't remember still amazes me. She does frequently get her stories mixed up, the details from a story from years ago, mixed in with a recent story is not uncommon. As we drive past the small church next to the interstate 55, she starts to tell me a story, "I never pass this church without thinking about your daddy and about Bro. Godair, and how he wanted your daddy to fill his pulpit, but your daddy never got the chance. I wonder if Bro. Godair is still the pastor there." I am pretty sure that Bro. Godair pastored a church down around Portageville, where I graduated high school. Or, as we pass a restaurant, she will say, "we used to go to that restaurant with another couple every Friday night, and then go home and play dominoes with them every Friday night". The restaurant we are passing is always different, but the story is always the same. Today, she picked up Kim's Bible, and opened it up and said "Look at this! I have never heard of this! You have heard of the New Testament? This is the Old Testament!" I nearly choked on my coffee!! Yesterday, she looked at her jacket and said, "this is the first time I have worn this jacket this year. I haven't worn it in a long time." I said, "well, momma, it is the first time you have worn it this year because it is January 3rd, 2011!" She laughed, and the moment passed. Never mind the fact that she has worn it to church the past two Sunday's. Life is sure interesting living with an Alzheimer's patient. Like one lady said, "you've seen one Alzheimer's patient, you've seen ONE Alzheimer's patient". Every one of them is different, yet every one of them have some common ground. There are similarities in all Alzheimer's patients, yet each and every one of them travel this path at a different speed.
My window of opportunity has closed at this point, so I will write about my doctor's appointment today, later. Perhaps tomorrow? Bottom line, I am healing good and it is time to schedule Phase II. My surgery was scheduled for February 2nd. Report to the hospital at 6:15am. Plan to be in the hospital 2-3 days, perhaps one drain. Here we go again......ready or not.
Saturday, January 1, 2011
Happy New Year!
When you have had cancer, it seems like every little "new" ache or pain sends you into a small panic attack, wondering if your cancer has returned. Last week, on Wednesday, on my way home from bible study in Festus, I began to feel "funny". Like a pain on my right side, that was kind of in my lower back on my right side, but it came around to my side, and my stomach, but only on my right side. At another time, and another place, my first thought would probably be, "oh, I must have pulled a muscle". But in this post-cancer stage of my life, that always seems to color my thinking. It always seems to rattle me a bit, mess with my focus a bit, and depending on how tired I am, may even cause me to have a little panic attack. I laugh as I write that. Again, in my pre-cancer days, I would laugh at the thought that I would even have a panic attack. To tell you the truth, I never really believed in panic attacks, having never experienced one myself. But now that I have actually experienced one, I now believe them to be real, teehee. I feel like that line from the Amy Grant song,
"People say that I'm amazing
Strong beyond my years
But they don't see inside of me
I'm hiding all the tears
They don't know that I go running home when I fall down
They don't know who picks me up when no one is around
I drop my sword and cry for just a while
'Cause deep inside this armor
The warrior is a child"
I guess once cancer invades your world, it never seems to go away. When you are going through all that mess, you meet and chat with all kinds of people that are on their second and third recurrence. It kind of messes with the ideas you have that once you beat this, you will get on with your life. It will always be in the back of your mind, waiting for a weak moment, a pain, a lump, a twinge, anything that seems like it came from nowhere, and the next thing you know, you find yourself wondering, toying with the idea, that it is possible that your cancer has returned. Even though I had not been on any of the breast cancer web sites in quite awhile, I found myself going there again, and asking the girls if they too had these same fears every time they had a pain or twinge, and sure enough they did. Whew, that made me feel like I was normal, LOL! I know what you are thinking, what is normal exactly. Fine, I have never been normal, but at least the fears that I am having are common among those of us that have faced cancer. As Keith and I were discussing the pain I was having, where it was located, he was the one that reminded me that the kids did tell him that I had carried a two-drawer filing cabinet case downstairs by myself, that maybe I did indeed have a pulled muscle. I did take the drawers out first!! But yes, it was heavy enough that I only carried the one, then made Adam carry the other one for me. My kids looked at me when I came down the stairs with the cabinet in my arms, and it was Kimberly that said, "uh, mom, I thought you weren't supposed to be lifting heavy things". Everything in life is relative. Just when you think you have your focus back, and life is going along ok, a pebble is thrown, breaks your glass and your view is no longer clear, everything is out of focus. I remember thinking, when daddy was going through the Leukemia battle for his life, that I would be glad when life would get back to "normal". Then the Lord took my daddy home to be with Him. And I knew then, that no, my life would never get back to "normal". From now on, there would be a new kind of normal. This new kind of normal includes dealing on a daily basis with the fears that my breast cancer will indeed return and mess up my life again. This new kind of normal includes dealing on a daily basis with the stupid disease that has a death grip on my momma's mind....Alzheimer's. This new kind of normal includes me learning a whole new level of faith, and what it truly means to walk in the dark most of the time, with nothing to guide me except my faith. I don't know how people do it without faith, this life that is filled with fears that seem to cause even the strongest believers to fall to their knees on a regular basis. I love my Lord, and am proud to know that He loves me and calls me friend. I love that He still loves me, even when I fail Him on a regular basis, and He lovingly guides me gently back on the narrow path that He wants me to walk. He forgives me when I get lost in my pity party of "why is this happening to me, to my family?" He knows in my heart of hearts, that I love HIM and want only to please HIM with my life. I am grateful that HE continues to help me do that.
"People say that I'm amazing
Strong beyond my years
But they don't see inside of me
I'm hiding all the tears
They don't know that I go running home when I fall down
They don't know who picks me up when no one is around
I drop my sword and cry for just a while
'Cause deep inside this armor
The warrior is a child"
I guess once cancer invades your world, it never seems to go away. When you are going through all that mess, you meet and chat with all kinds of people that are on their second and third recurrence. It kind of messes with the ideas you have that once you beat this, you will get on with your life. It will always be in the back of your mind, waiting for a weak moment, a pain, a lump, a twinge, anything that seems like it came from nowhere, and the next thing you know, you find yourself wondering, toying with the idea, that it is possible that your cancer has returned. Even though I had not been on any of the breast cancer web sites in quite awhile, I found myself going there again, and asking the girls if they too had these same fears every time they had a pain or twinge, and sure enough they did. Whew, that made me feel like I was normal, LOL! I know what you are thinking, what is normal exactly. Fine, I have never been normal, but at least the fears that I am having are common among those of us that have faced cancer. As Keith and I were discussing the pain I was having, where it was located, he was the one that reminded me that the kids did tell him that I had carried a two-drawer filing cabinet case downstairs by myself, that maybe I did indeed have a pulled muscle. I did take the drawers out first!! But yes, it was heavy enough that I only carried the one, then made Adam carry the other one for me. My kids looked at me when I came down the stairs with the cabinet in my arms, and it was Kimberly that said, "uh, mom, I thought you weren't supposed to be lifting heavy things". Everything in life is relative. Just when you think you have your focus back, and life is going along ok, a pebble is thrown, breaks your glass and your view is no longer clear, everything is out of focus. I remember thinking, when daddy was going through the Leukemia battle for his life, that I would be glad when life would get back to "normal". Then the Lord took my daddy home to be with Him. And I knew then, that no, my life would never get back to "normal". From now on, there would be a new kind of normal. This new kind of normal includes dealing on a daily basis with the fears that my breast cancer will indeed return and mess up my life again. This new kind of normal includes dealing on a daily basis with the stupid disease that has a death grip on my momma's mind....Alzheimer's. This new kind of normal includes me learning a whole new level of faith, and what it truly means to walk in the dark most of the time, with nothing to guide me except my faith. I don't know how people do it without faith, this life that is filled with fears that seem to cause even the strongest believers to fall to their knees on a regular basis. I love my Lord, and am proud to know that He loves me and calls me friend. I love that He still loves me, even when I fail Him on a regular basis, and He lovingly guides me gently back on the narrow path that He wants me to walk. He forgives me when I get lost in my pity party of "why is this happening to me, to my family?" He knows in my heart of hearts, that I love HIM and want only to please HIM with my life. I am grateful that HE continues to help me do that.
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.
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.
Saturday, July 31, 2010
Hey there folks! I just signed on to see when the last time I was on here, and read my last post, teehee. Apparently my husband had some time on his hands, while I was passed out in the hospital! I love him to death. Life has been super busy since I woke up from the over 7 hour surgery. It was a very painful and slow recovery. And let me tell you, I have a very high tolerance for pain! I have birthed 6 babies at home! I thought I was tough, until this surgery. I don't mind telling you, it flat laid me down. I think, if I had it to do over again, I would have made different choices. What I have been through, in pain, not to mention the inconvenience of it all, is not worth this body part I have now. The doctor says I have two more surgeries to go, but they will not be anything like what I just went through. The next one will most likely be a one night stay in the hospital, and the third one will be an out-patient surgery (same day?). And that I am not to make any "judgements" on his work until after we are all said and done. Yeah, right. I have an incision from hip to hip, that looks worse than Jen's scar from her C-section. And well, the other incisions are just plain weird looking. Keith says I went into surgery on Thursday morning, June 17th, at 6:30 a.m. and didn't wake up and actually talk coherently until Saturday night! Sunday I had to have help to get out of bed and go to the bathroom. Monday, I was able to get up, slowly, but at least I got up by myself. I had to roll over, and set up, but I could do it. On Tuesday they brought in my discharge papers and told me I could go home. I walked all hunched over like an old lady! I could not stand up straight, and therefore my back would begin to hurt if I stood up for very long. When I laid down, I had to have enough pillows behind me to keep me in a semi-upright position. Jenna, my daughter, had brought my momma down to the farm to help me in my recovery. Yes, I have a crew of kiddos to get this and get that, but they need a little guidance from an adult to make sure the chores get done, if you know what I mean. They told me it would be a 6 week recovery, with no driving for at least 4 weeks. I still have a weight limit on what I am allowed to lift. But, every day I am feeling a little stronger. I am not quite to the point of getting up and staying up and at it all day until dark, but every day I can stay up and at it a little bit longer! Believe me, I can tell when I have overdone it, too. My muscles in my stomach area are extremely tender. This makes it hard to hold my grand baby, Quincy for very long, but I am beginning to hold her a little more each day. She is such a joy, and I am missing being able to cuddle with her and play with her, and hold her up, and and and and. You get the picture. July 9th, Keith drove my mom and I to Portageville Missouri for my 35 year high school reunion. I didn't do much more than walk in and sit at a table and visit with friends from my past, but I did enjoy getting out of the house and seeing people! My mom got to visit with her BFF Thelma Harmon, which is where we stayed. We are getting ready to leave on Monday morning to drive my mom to Stuttgart Arkansas, because her brother, Henry Carl White passed away. We knew him as Uncle Shorty. It has been many years since my mom has gotten to see and visit with her family members from Possum Valley, and she is actually looking forward to her "White Reunion". I am sure it will be a few days of mixed emotions. Funerals are sad events, mixed with the silver lining of getting to see so many of your relatives and friends all in one place. It is about a 6 hour drive, so it shouldn't be too hard a trip. We will leave on Monday morning, and drive to Collierville, and stop and have lunch with mom's friend, Janice. While there, mom will get made beautiful again! Janice is a beautician! We will get back on the road, and head toward Stuttgart, the duck capital of the world, LOL! The visitation is Monday night, from 5-7 p.m. The funeral will be a grave-side service, per Uncle Shorty's request, on Tuesday afternoon at 2 o'clock. After that, we are playing it by ear. We may stay in Stuttgart and visit some more with momma's family, or we may get in the car and head at least part of the way home. I am not really sure at this point. I would appreciate your prayers for my momma, as I am sure this is going to rattle her good. I am looking forward to getting to actually meet some of my momma's family face to face. One of her family members in particular, I have been talking to in emails, Facebook chat and on the phone so much in the past three years, I feel as if we are best friends. Yet, we have never met face to face! I am really looking forward to that meeting...Cousin Bill, here I come!!
Sunday, June 20, 2010
DAY IN A LIFE
hello all,this is Keith, debs husband.the day is Sunday June 20, fathers day. We are at BJC Hospital in the third day of recovery of reconstruction surgery. Deb is doing much better this morning, took a little nourishment drinking fluids . RN"s plan to set her in chair today. I've pondered a lot of thoughts over the last few days as i watch my bride of thirty years lay in controllable pain. how can one woman withstand so much and still give so much. As most of you know the last 3 years have been a little trying to say the least, filled with hospital visits and hospital stays. Many many trips and countless miles back and forth to hospitals and to loved ones.YET in all that has transpired deb has never lost her focus on the task at hand, always ready to be there when needed, sacrificing her own children's time and mine to be there for her mother or who ever is in need. and her children will call her BLESSED. I sometimes wonder where she gets the strength, i am reminded of her constant faith,unwavering faith in our LORD JESUS CHRIST. I know that our time to enjoy is coming . It"s been awhile since we got to enjoy time off . As you probably know deb spent her birthday cleaning her mothers garage out so the termite man could drill through the concrete to treat the house every 14 inches, all day long. June 7, Monday,our 30 year anniversary she drove her mother to Memphis then over to little rock to spend time with old family friends, came back on Friday in time to take her to the doctors for mammogram got back to the farm on Saturday, June 12 left for hospital wed. June 16, really don't know how she has time for it all. she always says you have to make time and make it a priority. So here we sit and lay on fathers day enjoying each others company even if its in a hospital room in the middle of the city. we don't get to choose our paths sometimes we just walk the path that the lord lays before us . My thoughts and prayers go out to all those who cannot grasp the whole concept of true servant hood. Giving of yourself and your time when its inconvenient not convenient,sacrificing your own true enjoyment to give enjoyment to the less fortunate. sacrificing, do we really know the true meaning ,I know my wife does, I see her push her self to the limits all so often,I can stand by her and support her as i always have and always will. WHERE THE LORD GUIDES THE LORD PROVIDES''
Thursday, May 20, 2010
Processing lots of stuff these days...
I signed on and was surprised to see that I had not been on here since March. Life has been so incredibly busy. On March 15, I had my port removed. On March 17, my mom had a fainting spell at church while at her Wednesday bible study. On March 18, I took her up to Excel Imaging to have an ultrasound done to check for blockages in her veins that might be a contributing factor to these dizzy spells. On March 19, her neurologist called and suggested we add another drug (Trileptal) to her prescriptions. On March 20, I moved up to mom's so that I could watch her for any reactions to this new drug. I figured I needed some quite time to work on her tax return anyway, so I packed a bag and moved up there. It also was spring break for the Sullivan kiddos, so they came to my house for their spring break! On Monday, my sister Lois came to mom's to join us. Mom kept asking me how I was coming on the tax returns and why don't I take a break and come join them, so eventually I just closed up the laptop and went and sat outside in the swing with them. We did lunch with mom's friend from House Springs, and mom really seemed to be having a good time. Not long after we laid down to bed on Tuesday night, Lois stuck her head in the bedroom telling us that she was heading up to pick up my sister Becky from the St. Louis airport! Beck had been somewhere to watch her daughter play volleyball for her school, and because of a huge snowstorm in the Denver area, her flight had to be re-routed! Woohoo! So, it took an act of God, but all three of mom's girls were there with her for her birthday! Beck and Lois arrived at mom's a little past midnight, and were leaving the next morning by 9:30 a.m. I don't mind telling you, I was hoping for a little longer lay-over, but it was nice that momma got to see them and spend some time with them both. Then we made it through Palm Sunday and Easter, got mom started on Meals on Wheels program, and finished up the tax returns and got them in the mail. On April 20, while up there to get her grass mowed, we found termites. We made the appropriate phone calls to get someone over there to inspect and confirm, and yes, it was confirmed. He did a walk through of the basement to make sure there were none on the inside, and there were not, thank God! There was some damage to a door frame on the outside of the basement, but that was minor. We made the appointment to have her house sprayed on May 12th, the soonest he could come. After giving me the instructions to have her garage cleaned out, everything away from the walls before he returned, we made the appointment. April 22, mom had another doctor's appointment, that was just a check-up to make sure everything was fine. They doubled her Aricept and her seizure meds based on their assessment after giving her the MM test again. She is now on 10 mg of Aricept once a day, 1000 MG of Keppra twice daily, and 300 mg of Trileptal twice daily. We keep her pills in a pill box with the days of the week to help her know if she has taken them or not, and Kelly makes sure she gets the morning dose before she leaves for work and I call her around 5ish and remind her to take the evening pills. Sometimes Kelly has to work until closing (8pm) and mom will go to bed before Kelly gets home. Other than the Dementia issues/Alzheimer's issues, mom is doing great. She is still considered to be in Stage 5, with some days (her off days) some issues that are considered to be Stage 6. You can read through the stages on www.ALZ.org But most days, she is a solid Stage 5.
That's a quick update on my life with my momma. The update on my cancer walk has been pretty much normal until this week. I have enjoyed having a life that resembled my normal before cancer life. My energy level is still not what it was before cancer, but I am getting there. It has been 6 months since I finished my last radiation treatment. It has been 3 months since I got my port removed. So, without the regular trips to Barnes, I have fallen into the feeling "I am done". And, with that feeling, I began to feel good about continuing on with the "next thing". That next thing is re-construction. I thought I was ready enough to go to my doctor appointment by myself. Bad decision. I took two of my daughters, Jen and Jess, and of course, my grand baby, Quincy. They sat out in the waiting room, which put me in there alone, with the doctor that was giving me a run down of all the procedures that this would entail, as well as all the worst case scenarios. The more he talked, the more light headed I got, and it wasn't long before I was feeling the intense need to lay on the floor and feel the cool tile against my face. I told the doctor I just wanted to sign the consent form and leave. I had told him what I wanted, based on my research, made sure he understood that, and said where do I sign. He said, no way, that I needed to take it home, think about it, look it over with my husband, and fax it back to him. This was a huge surgery, and possibly life threatening and not to be taken lightly. It was not a "boob job". He said, he does those, and most of those girls return to work rather quickly. But reconstruction after mastectomy was a totally different animal, and involved severed veins, damaged veins, brittle bones from radiation, damaged skin, etc. Veins, arteries, important issues, these things would need to be moved around, reattached in other places to make sure that adequate blood supply was in place in order for tissue and other things to be able to survive. It is a 6 hour surgery. I should plan to be in the hospital for a minimum of 4 days, some require a week long stay. I need to report for surgery at 5:30 am the day of surgery, with nothing to eat or drink after midnight the night before. This surgery is a standard 6 weeks recovery, and I should expect to walk like "an old man", hunched over for at least a couple weeks, maybe longer. Lots and lots of details that I won't share here, but suffice it to say, I was feeling more than a little nauseated. What was I thinking?? I don't know why I thought I was "ready" for this. I came out of that office, trying not to run down the hall, down the stairs, and across the parking lot to my car. I wanted to be home, sitting on my deck, watching my birds, listening to my kiddos play in the yard....I wanted to be HOME. I know, I know that God is in control, and that God's got this, and I have faith He will see me through all of this, but I was feeling like a big fat human being, with a whole bunch of emotional hormones running rampant. I felt like that Amy Grant song..."they don't know that I go running home when I fall down". I wanted to run home. I called Keith, met him at the parking lot of the local gas station, and just cried as he wrapped his arms around me right there on the parking lot. It's not over, by a long shot. More surgery, more drains, more pain, more recovery, more bed time, more down time, more "he maketh me lie down" time. I will get through this, I will, with God's help.
That's a quick update on my life with my momma. The update on my cancer walk has been pretty much normal until this week. I have enjoyed having a life that resembled my normal before cancer life. My energy level is still not what it was before cancer, but I am getting there. It has been 6 months since I finished my last radiation treatment. It has been 3 months since I got my port removed. So, without the regular trips to Barnes, I have fallen into the feeling "I am done". And, with that feeling, I began to feel good about continuing on with the "next thing". That next thing is re-construction. I thought I was ready enough to go to my doctor appointment by myself. Bad decision. I took two of my daughters, Jen and Jess, and of course, my grand baby, Quincy. They sat out in the waiting room, which put me in there alone, with the doctor that was giving me a run down of all the procedures that this would entail, as well as all the worst case scenarios. The more he talked, the more light headed I got, and it wasn't long before I was feeling the intense need to lay on the floor and feel the cool tile against my face. I told the doctor I just wanted to sign the consent form and leave. I had told him what I wanted, based on my research, made sure he understood that, and said where do I sign. He said, no way, that I needed to take it home, think about it, look it over with my husband, and fax it back to him. This was a huge surgery, and possibly life threatening and not to be taken lightly. It was not a "boob job". He said, he does those, and most of those girls return to work rather quickly. But reconstruction after mastectomy was a totally different animal, and involved severed veins, damaged veins, brittle bones from radiation, damaged skin, etc. Veins, arteries, important issues, these things would need to be moved around, reattached in other places to make sure that adequate blood supply was in place in order for tissue and other things to be able to survive. It is a 6 hour surgery. I should plan to be in the hospital for a minimum of 4 days, some require a week long stay. I need to report for surgery at 5:30 am the day of surgery, with nothing to eat or drink after midnight the night before. This surgery is a standard 6 weeks recovery, and I should expect to walk like "an old man", hunched over for at least a couple weeks, maybe longer. Lots and lots of details that I won't share here, but suffice it to say, I was feeling more than a little nauseated. What was I thinking?? I don't know why I thought I was "ready" for this. I came out of that office, trying not to run down the hall, down the stairs, and across the parking lot to my car. I wanted to be home, sitting on my deck, watching my birds, listening to my kiddos play in the yard....I wanted to be HOME. I know, I know that God is in control, and that God's got this, and I have faith He will see me through all of this, but I was feeling like a big fat human being, with a whole bunch of emotional hormones running rampant. I felt like that Amy Grant song..."they don't know that I go running home when I fall down". I wanted to run home. I called Keith, met him at the parking lot of the local gas station, and just cried as he wrapped his arms around me right there on the parking lot. It's not over, by a long shot. More surgery, more drains, more pain, more recovery, more bed time, more down time, more "he maketh me lie down" time. I will get through this, I will, with God's help.
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