Monday, July 25, 2011

Makes me wonder

Dear Mom,

Sometimes I wonder what really goes on in your mind. How does this disease make you forget what we just talked about a minute ago? How do you not recognize people you have known for years? Will there ever be a cure for this awful disease? Is there anything more I can do for you besides pray and try to support the Alzheimers Association? What if pappy were still here, would this even be an issue for you? And would I find it easier to care for you if he were at least here to help? I thought it was hard losing pappy to leukemia and diabetes, but it is much harder losing you to this disease! Are thoughts there, but just so clouded that you can't let them out? What if you read more or did puzzles more, would that have helped keep this away, or at least slowed it down some? What if the doctor had only listened to me a couple of years ago when I started noticing this? What if she hadn't just said that you were just depressed and needed to get out more? What if she hadn't just felt content that I had gotten a dog for us and that was great? What if she had listened the 2 or 3 times I asked her for an assessment? Would having the medicine earlier have had a chance to work better to slow things down? Those thoughts have bothered me so much! Thankfully a friend from church referred us to the doctor we are going to now, and so thankful for that doctor referring us to UCONN. Do you realize some of the things you say? Do you realize you're off when you say them or is it just too much for your mind to even comprehend? It's funny, because sometimes when we are in the car and I am listening to a message, you can almost quote the verses they are saying by heart still. Yet you don't remember who just called on the phone or what they wanted right after you get off of it. Then this morning at breakfast you for some reason I don't remember said that you had three children! That really shocked me to hear you say that! So I had to press a little bit to see who the other two were. You said you had Junie, Johnny, and me. Junie and Johnny are your brothers! So where did that thought come from? Afterwards, I said something like no, those are your brothers, you didn't have them. You didn't really say anything and just kept eating your breakfast and turned to look at the TV. I watched your face to see if what I said made sense to you, but I couldn't really tell if you got it or not. Yesterday you were in the living room waiting for your ride to pick you up for church, you had been sitting in there for at least an hour if not longer. Your breakfast dish was still on the table with your medicine under it. I asked you what you ate for breakfast, and you told me cereal. I asked how you could have if the bowl and medicine were still there on the table. You said you set that back up for tomorrow after you had already eaten. When I went to wash my bowl the washcloths were bone dry, which means you never washed a bowl, so you couldn't have eaten breakfast or taken your medicine which you need to take every day. How does your mind convince you that you already ate when you definitely didn't? What do I do about that? By that time it was too late to do anything because your ride was going to be here to pick you up. So you just had to take your medicine for lunch. How do you remember that you met someone at church who knows me, and can remember to tell me, not the name of course, but a slight description? How do you remember that about an hour or so after it happened, but don't remember the short term things I just told you? I wonder what's in store for us next? I wonder, but try not to, if you're going to get to the point where you will not remember me soon. I really hope not, but I pray God will give me the grace to cross that bridge if we ever come to it. For now, I'm thankful for the bits of memory that you do have, and I'll just try to keep utilizing that! Mom, I love you, crazy mind and all!

Wednesday, July 20, 2011

Wish you were here

Dear Mom,

This has been a tough week for me. I have really been struggling. There are some big changes going on, but I can't share them with you. Wish you were here, I know you still are here, but wish you were here in the way that I need you! Someone to talk to and pray with and get good godly advice from. I really miss that!! There has been talk going around, there have been people that have been insensitive to me. Sometimes I think people just don't really get what it is to be a caregiver! Sadly, though, people are trying to use that excuse to make some of the changes I am dealing with better. They are saying that the change will be good for me because of you. It doesn't make sense to me, though, how they think it will be so much better for me. Some of these people don't even ask me about you. So, they wouldn't begin to know what would or would not help me. I have been angry, I have been discouraged, I have been so extremely sad, I have been worried. I just wish I could share some of this with you. I haven't even told you of the change because you would be confused, and would keep asking me about it. It's just a small change to my job description, but it's not something I really want or desire to do. And again, people have been talking to other people telling them that this was what I wanted, and that it has worked out so well. That has bothered me too, because people don't realize I am having a hard time with it, so they just go on, not seeing that I am hurting because of it. It works for others, just not for me the way I would like. I know it will be fine and I will be ok, but I really want to share this with you. Thankfully there are a couple of people I have felt comfortable sharing most of this struggle with. But there's nothing like a mother's comfort and a mother's prayers and a mother's advice. So, I will just have to make do with sharing this with others. I wish I could tell you to pray for me about this. Thankfully I do have others praying about it with me.
Then, it has been so hot this week. But you, you don't get hot easily, and you keep putting that jacket on. I have finally gotten you to put a short sleeve shirt on rather than the turtleneck dickie. So yesterday, you had your shirt and jacket on and came out to breakfast. The air was on in the living room, and the ceiling fan in the kitchen was on low, so of course you were complaining of being cold. I told you not to think about it because you just thought you were cold because you live in those long sleeves. Yesterday and today were some of the hottest days of the year. The temperatures were in the upper 90's with heat indexes in the 100's. Today was about 103 and the heat index was about 108 or so. But, yesterday when you complained, I just turned the kitchen fan off, so you wouldn't complain anymore. Well, after breakfast you complained, but in a different way. This time you said you were feeling so hot. I had gotten up and was bringing the dishes to the sink to wash them. I looked at you and you didn't look good at all. I went over to you to try to get that dumb (that's what I started feeling at that time) jacket off of you. I was so upset about that jacket and more upset because I couldn't get your arms out of it and you weren't helping. At one point you slumped forward and your eyes rolled back in your head and your bottom lip distended and you were drooling a little. I shook and tapped your face a little a few times and you came back to. I kept trying to get the jacket off of you. You were wet with sweat. You came to, but then started dry heaving. You never did get sick, but you sat there for a while just not looking good. I turned the fan back on. After a little while you wanted to go to the bathroom, I took you and got you back to your room after. I wasn't as scared about you passing out because this was about the third or fourth time. I don't think you realize how much you have on and how hot you really are, and then get overheated and go down on me. It's so frustrating because even though I'm used to it, it still does scare me. The social worker stopped by yesterday, too. She noticed that you didn't look that great. I didn't call the doctor yet. One of the last times you passed out, you were in the hospital for a week, hating it, and they didn't find anything. So, I will call and check with the doctor next week. Today you were much better. You were getting around better and were more alert. Of course you don't even have a clue of remembering passing out yesterday. Thankful that you are better today, and praying this won't happen again. I even felt OK about leaving you for a few hours so I could go to lunch and shopping with some friends. The homemaker/companion was there when I left and she still had about an hour with you, so that helped me be able to go out for a little bit and I had a great time. I even brought you back a couple of things. You always ask what I brought you if I go out. I got you some root beer (your favorite) and some candy. You told me how wonderful of a daughter I was, and told me how much you loved me. Well, I'm glad you liked what I brought for you, I love you so much too. Just...wish you were here....

Saturday, July 16, 2011

Good Day!

Dear Mom,

This was a good day for you....physically anyway. Actually since we went to the doctor and got some new medication, this has been a pretty good week for you! You seem to be getting around better! You still ask me about 15 times what the day is, but I have gotten used to that now.....well, as used to it as a person can get. I still have those "MA!" moments. Those moments where I try to make you exercise your brain to figure things out, even though I somehow know it's to no avail. This morning at breakfast a "walk for alzheimers" commercial came on. It was interesting, I was trying to listen to see where I needed to go to be a part of that. You were interested too, and said, "Yea, that's important, because those people need friends." I had to ask you to repeat what you said, because it shocked me a little to hear you say that. I didn't have the heart to say that was what you have. I kinda wanted to, so I could tell you that you need a friend, a real person to talk to, not just Bella. Even if I did mention it you would have said, "Stacey, stop telling that story!" Then, "That's the first I've ever heard of that." That has become your favorite line lately. You washed the dishes after breakfast, then got back on your bed while you waited for me to get ready to go. You had your short sleeves on, which was a miracle, but it was hot, you even said so. You even remembered to bring your jacket with you for the mall, because you are usually cold in there. We got to the mall and got our nails done. Tony, the guy in charge of the nail place, even said you looked good. He said last time you were there you didn't look like you were feeling that well, but this time you looked much better. So, see, I'm not even the only one who noticed. :) Your nails came out nice, and you liked them! Then I wanted to go to one more store to look around and you did very well, you stayed with me the whole time. You didn't have to go to the chair to sit right away. It was almost like old times. When we left the other store, you said you were hungry, and right next door was Wetzel's Pretzels. I asked if you wanted that and you did, so we got some pretzels and drinks. I had to go to Target quickly to pick up some groceries (because they now have produce at Target, LOVE THAT!!). You stayed in the car that time, but you had your pretzel and drink, of course along with air condition, to keep you going until I got back. You were good, just a bit messy from the crumbs, hee hee. Now it's a bit later from when I started this post, and that "better" thing that I was talking about, well, now I have to wonder a little...but to be fair, I did say that the "better" was the physical, not necessarily the mental. :) I took out the leftover pizza for dinner, and went out to water the plants, but then got the notion to powerwash the house, too. So, I was gone a little longer than I originally planned, when I got back inside you had already put the pizza in the oven, and left it a little too long. It was ok, just a little burnt, but here's the got some punch to drink, then I told you to remember that you still had some Root Beer in the fridge, you definitely wanted that. So, I convinced you to put the juice in the fridge and get another cup for your Root Beer. You did, got your plate with the pizza and went back to your room. You said something like, "Oh boy!" That made me nervous, because I didn't know if you dropped something or spilled something, or what. When I came to see what the problem was, you show me a cup of juice that was on your table already, while you had the cup of Root Beer in your hand, wow!! I just took that cup and added it to the other cup of juice already in the fridge. Oh well, that's you npw, but it's ok. This was a good day for you and I feel encouraged by this! Glad this was a good day for us! Hope we'll have many more of these good days!! Love you so much!

Thursday, July 7, 2011

Another one of those days...

Dear Mom,

Yesterday was interesting, too. Bella wanted to come to my room at about 3:30 this time. It still made me a little crazy, but we did sleep in longer than the day before thankfully. I think we got up close to 7. You were still off, you kept putting on your nice turtle neck and skirt thinking you were going to church....which Wednesday is church, but not until the evening. You were ready to go then. And once you get something in your mind now, there is no turning back. I told you that you weren't going in the morning, but at night. So you changed into your pants and active wear jacket that you always wear...always. When I was getting breakfast ready, you came in with the turtleneck and skirt back on. I once again told you there was no church that morning, so before you ate breakfast you went back and changed into your casual outfit. After breakfast I was washing the dishes and you came out with your "church" outfit and your purse this time. Aaahhhh!!! You were killing me. You looked out the living room window and told me the neighbor wasn't home. You were nervous because she is the one who picks you up for church. Once again I told you that church wasn't until that night, and I counted down the hours for you, you had 8 hours before you needed to worry about getting ready for church. So you went back to your room to change. I took Bella out to go potty and then was getting ready to head over to the school to help out again and your "church" outfit either never got taken off that time or you put it on again. You asked if that was OK to wear. I couldn't answer you at that point, so I just said a quick sure. Then I kissed you goodbye. You asked where I was going and I told you to help at school. You asked if the neighbor was going to come pick you up and I just said a quick yes before I left the house. Man, was that an off morning for you! I just left hoping that you would eventually realize what I had been saying. I was so busy at school that I hadn't checked on you all day. So, on my way home I decided to finally call...not good, there was no answer. All my worst fears flooded my head. You decided to go to church on your own and got lost or got hurt. Even though I know you can barely even come into the kitchen without needing to rest because you have been hurting so badly. Why do I let my mind do that to me? I must have called 5 0r 6 times, and no answer. I started to freak. Then I called one more time and you finally answered...phew. You had just been outside with Bella, and you were fine! Thankfully! I talked to you and told you I was coming home. I got home, we had dinner, then both went off to church. On my way home there was some lightning! Well, you know me, though, right now I'm not sure if you'll remember this about me, but I hate lightning. I got home after you did, I sat in the car for just a few seconds to wait for the lightning to come again, so I could run out of the car in the in-between time. I ran into the house and you and Bella were at the door. You were holding Bella's leash so I could take her out as I normally do when I get home. When I got to the door, I saw a quick glimpse of lightning behind me, I jumped in the door so fast! I asked if she had already taken Bella out, she said she had and I said good, put that leash away, cuz I'm definitely not taking her out right now. Mom got a good laugh out of that one. We both had to chuckle. Because of the thunder and lightning you came downstairs with me. We watched America's Got Talent and got a kick out of the performances. It was a nice night together. So, the weird, annoying morning ended much better that night. It's nice to have those moments, especially after some of the crazy ones. Glad for these good memories! Love you!

Wednesday, July 6, 2011

Made it!!

Dear Mom,

I actually made it through yesterday!!! I wasn't sure I would, but thankfully Mama G. had me emptying out drawers, moving things from one place to another, and shredding old documents. That kept me on my feet most of the day, so that helped me not be as sleepy as I normally would have been.
I got to school yesterday morning about 7 a.m. I forgot that our desks were still in the hallway, so my plan to organize and clean out my desk was foiled. I just cleaned some of my shelves instead. I started getting hot in the classroom, so I went into the teacher's lounge and put the air on, and just waited to Mama to get there at 8:30. I went to her office, we talked for a while because she wondered why I was there so early. I told her about our crazy morning. Mama G. had some similar experiences with her mother several years ago. One Sunday morning her mom was up at 2 a.m. getting dressed for church. She told her mom it was too early for church, she said her mom just got in bed with all of her clothes on. She said she wanted to yell at her, but had to remember it wasn't her fault. It helped me so much to hear her, because I have had some of the same feelings and she helped me understand that it's normal. Being a caregiver is hard.........really hard!! People that aren't cannot understand, so it's hard to talk to people about it. I have started keeping most of what is going on quiet, because it's hard to talk to people who don't get it and sometimes make it worse with the things they say. They think they are helping, but are just making me feel worse. There are so many times I want to share some of these things with you, but I can't do that anymore. Mama G. and I had great conversations yesterday, they helped me so much! She could never take your place, don't worry, but I'm so thankful the Lord has given me someone like her to talk to. We worked a long day yesterday, too. We were there until about 5:30, by that time I was ready to get home. :) I called you a couple of times to tell you not to fix dinner or anything because I would be coming and would take care of it, then I also added in that I would bring something home. I told you that because sometimes that helps make sure you don't try to put anything into the oven. You love when I bring things home. The one thing I didn't tell you was that I wasn't bringing dinner home, I wasn't sure at the time what I would bring home, but because it was so hot and I was so hot and tired from working hard all day, I brought home McFlurries for us. The reason I told you not to worry about dinner was because I had forgotten the night before to take our leftovers out of the styrofoam containers. And a couple of times you have put those in the stove to heat up dinner. That makes me nervous, so that's why I told you that. Then I told you if you were hungry to eat one of the peaches in the refrigerator. When I got home one of the styrofoam containers was on the counter, but no marks from a stove or anything thankfully. It just so happened to be my meal, when I looked inside there were only 3 small french fries left!! I told you those were mine, so since you ate mine I was going to take some of yours, so I did. You still had plenty, though. By dinner time, I was fairing better than the rest of this crazy day. So thankful for the opportunity to get away, work hard and help someone else, but in the process get some help from that person as well. Sorry sometimes I just get a little crazy, but mom I'm doing this all by myself and it's hard. I hate to see you like this and I still in the recesses of my mind am hoping to fix you. I'm working on it. Please know that even though I may act like it, you are not a burden! You are my love, you are my mom, and I feel a type of pleasure to be able to do for you what you have done for me for so many years. I love you!

Tuesday, July 5, 2011


Dear Mom,

I am really struggling right now, fighting back the tears so I can write this, but also so I can get ready to go over to the school. It's only 6:17 a.m. on July 5. I didn't even stay up late last night. I got in bed a little after 11 because I was so crazy tired. I got you and Bella settled then got to bed myself. Then, just as I feared and expected, because your room is so hot and uncomfortable about 1 or 2 a.m. I hear you talking to Bella, then I hear her scratching at my door to come get in bed with me. I at least have the fan going in my room so she knows she won't be so uncomfortable. So, she's in bed with me, and I'm trying to get comfortably back to sleep. I do, but at 4 a.m. Bella just starts barking, she made me nervous because it was a bark as if someone were outside or something. So, I get up and put her down and she runs into the kitchen, which again made me nervous. Once she got in the kitchen she didn't bark anymore, just went to her water and started gulping it down. Was that why she was barking?? To get my attention to let her out to get some water?? I'll never know, but if so, she was pretty clever. I was a little annoyed with her, but as long as I could get back to sleep, I would deal with it....but no, that wasn't the case......:/ After I got back to my room, Bella came bursting through the door to lay on the floor of my room. I got back to my comfortable spot and was trying to get back to sleep, when I hear your TV come on. A little later I hear you get up to go to the bathroom. This doesn't really mean anything. I figured you would go back to your room, eventually turn the TV off and go back to sleep for another couple of hours. Nope, I hear you laughing at whatever was on, then I hear your dresser drawers opening and closing. I had to get up to see what you were doing.....getting dressed of course. I could have just let it go, but as tired as I was I didn't. I told you between you and Bella, you were both going to kill me. I told you it was only 4 o'clock, too early to be up. You said you were just getting your clothes on and getting back in bed and told me I didn't have to be up yet. But I told you that Bella already woke me up, then your TV is keeping me awake, too. You said you would turn it off, but I told you not to worry about it now, I was already awake. I just went back to get in bed. I started reading to see if that would help, but it didn't, and you didn't turn off your TV. I read til about 5 or a little after, then just figured I would take Bella out. The paper guy creeps me out a little, so I figured if I got her out early enough, we wouldn't have to worry about him. Oddly enough, he had already come and left the paper, thankfully didn't run into him. When we came inside about 5:30 you had the kitchen light on, and you were getting ready for breakfast. At this point I just wanted to lose it. You were looking guilty, but only because you took one of the apple pie bite dessert things from yesterday and were going to have it for breakfast. When I came in you asked if it was ok. I said fine, but my tone wasn't pleasant so you were going to put it back. I told you no, not to worry about that, it's just that it is so early for breakfast. You said you thought I needed to go somewhere today. You asked if I was getting my classroom set up, I said no, just helping out. You don't know about that, but I can't tell you anyway, you won't understand some of the crazy things going on with that. I went to the bathroom just to let out a few tears, then had breakfast with you. You kept mentioning how dreary it was outside. I kept telling you it's because the sun isn't even up yet, it's too early!! I started washing the dishes after breakfast, you asked what you could do, and I said nothing just go ahead back to bed. You were excited and said, "Oh, I hoped you would say that!" Ugh!!! So, now I'm just getting ready to go over to the school, getting makeup on and getting dressed. Trying to keep from crying and ruining my makeup. After I write this, I'm going to head over to the school, waaaayyy earlier than I need to, but I just need to be somewhere else right now. Maybe I can organize my room or something. I just need a little break from things. It is going to be a long day, I'm so tired, but hopefully getting a little coffee and heading to school will help me get over my frustration so I can handle things better when I get back home some time this afternoon. So thankful for blogging, this is so therapeutic for me. I love you, but right now, just need a little time away from you. This is so not easy to admit and there is a really guilty feeling for admitting it. Only those who are dealing with situations like this can understand what I'm saying. But I must be honest. I love you, but I'll be leaving soon for the day. Prayerfully when I come back I'll be able to move on from this crazy morning. I know you have already moved on and forgotten it anyway. Hope you and Bella have a good day.

Monday, July 4, 2011

Happy 4th!!

Dear Mom,

Happy 4th of July!! All day long you have been surprised to hear that today is the 4th of July. Woke up this morning, took Bella out, and come back inside to find you searching in the linen closet. I ask you what you need and you said the bed was wet. I got the sheet out and went into your room. The bed was soaked, it usually isn't that wet. I realized later that you weren't wearing what you normally do and are supposed to wear so that won't happen. We were putting the sheets on and you moved a pillow with your TV remote, and it falls behind the bed. I killed my arm trying to get it for you, was feeling a little bit crazy at that point. You said again what you have said a few times before, "Well, it's time for you to put me in a nursing home." By that time I was so discouraged to hear you say it again, I said, "Ok, I'll look into that tomorrow." You didn't say anything after that and we just relaxed in bed again. We got up a little later to have breakfast, and the homemaker and companion came about that time. After breakfast, and after the homemaker/companion left I went downstairs as has been the case lately. It's just a place to get away a little bit. I exercise, and relax on the computer. Lately you have been coming down to join Bella and I. After a while you are ready to go back upstairs and watch your shows in bed. You made yourself peanut butter and jelly as you normally do for lunch. A few hours later I told you that I thought we would maybe go out to eat for dinner. You were very excited about that idea. You got your sneakers and were ready to go not too much later. We went to Red Robin, I figured the 4th is about burgers, so what better place to go and get some gourmet burgers. It took you about three tries to figure out what you wanted. At first it was a chicken sandwich, then a certain burger, then finally the Red Robin gourmet cheeseburger. I got a BBQ burger. We enjoyed our meal, but we definitely had to take some home because it was too much. You got around pretty well today, too. After a little bit of a crazy morning, the day ended up going well. I want to be sure to remember each of these moments because things change so quickly and I want to take every opportunity to keep these memories close to my heart. So thankful for another 4th of July with you and being able to enjoy it, even when you don't remember what day it is. I took out the dessert a little while ago and you didn't remember where we got it from. After I told you, then you said you remembered going to the restaurant. That was good! You may not remember, but I will keep these memories for you. This is one of the reasons why I write these letters to you. You are already in bed because you said about a half hour ago you were ready to head to bed. So, goodnight, love you, and again....Happy 4th of July!