Saturday, April 28, 2012

My Shared Thoughts

Dear Mom,
This is from another post that I wrote and I wanted to share it here with you!  I love you!

I hate this disease!!!!  This disease that changes a mom or dad and makes them become more like a child.  I hate this disease that changes the way a husband or wife responds to a spouse, forgetting the many wonderful years they have spent knowing and loving one another.  This disease that changes a brother and sister relationship, and keeps the person from remembering those special family memories, in only the way a brother or sister can.  I hate this disease that changes a grandma or grandpa and keeps them from knowing their precious grandchildren.  This disease that changes an outgoing, strong, confident individual into a shy, introverted, weak person.  I hate this disease that changes an amazing cook...someone who always had people looking/asking for certain favorite foods at picnics or parties, to someone who doesn't realize that you don't need to put the burner on high to scramble an egg, someone who doesn't remember what condiments to put on certain foods, who ends up putting jelly or butter on french fries, and now doesn't even try to get near the stove for any type of cooking.  This disease that changes a superb gardener... someone who always took care of her father's garden when he became an invalid and was no longer able to, who planted beautiful flowers around her own house in the spring and summer, and who always had beautiful plants throughout the house that people marveled at, into someone who doesn't remember to water the plants and is ready to throw them out if they start to wilt a little, and who has taken a strong liking to putting fake flowers in the front window instead.  I hate this disease that changes someone who always kept up with keeping the house clean and neat, to someone who barely even knows how to wash dishes anymore, who takes her plate or cup that she just finished using, wipes them a little with a kleenex or napkin and sets them back in place on the table for the next day, who puts forks, spoons, and knives back in the silverware drawer with food or butter or sauce still on them.  This disease that changes a clean, put-together person and keeps them from being able to properly clean themselves or clean up after themselves, especially with bigger messes, though they try, which often times makes matters worse.  I hate this disease that keeps a person from knowing what day it is, let alone the month or even the season.  This disease where time is non-existent; the person becomes unaware of how many hours have passed, has no idea how late or how early it is, or how inconvenient that can be at times.  I hate this disease where a person who has zipped, countless jackets, and buttoned countless pants or shirts, as a daycare provider for 22 years, now finds that to be a very difficult task to complete for themselves.  This disease where a people person doesn't want to answer the phone or let anyone in the house because they are so unsure of themselves and their ability to properly communicate.  I hate this disease where the person that once taught me to read by reading to me so much as a child and taught me to sound out words so that I could become a better reader (to the point that I read to my K-5 class), can barely read a few words from a magazine or on TV.  This disease that keeps a person, from when they finally do answer the phone, from taking a proper message (it ends up being my name, shakily written with an illegible number underneath it), then asks me who it could be.  I hate this disease that does not allow the person to remember what you just told them, but amazingly enough an old, familiar song comes on and they can sing or hum that without a problem.  This disease that makes a person ask the same questions countless times.  This disease that takes someone who used to be or at least used to seem to be fearless, and changes them into someone who has become more frightened of things, and sometimes things that aren't there (although it has been a while since that has taken place).  This disease that takes away words, memories, thoughts, and holds them captive.  This disease that has taken away my ability to ask or talk about old memories.  This disease that has taken away the person who holds the most memories with me, the only person to be able to share some things with...the person who I would love to go back and reminisce with, former kids that were at daycare, former church friends, former family friends, former jobs and friends from jobs, former school friends...for both of us.  This disease that has taken away all memories of the countless, wonderful family vacations.  This disease that destroys memories, even new ones that try to be made, it eats them away so quickly!  I hate this disease which has no cure, though, I am thankful for the meds that can help slow the progression some.  I hate this disease that has made me feel more like a single mother, or actually just a full-time caregiver...who doesn't have a clue what she is doing or if it's the right thing or not, rather than a beloved, special, doted on, and loved only child. This disease that has almost, but not quite made my position as daughter a forgotten place, with that one time that I was called sister.  I hate this disease!!!  But I LOVE the person that has this awful disease, and I continue to pray for a cure!  If not for my beloved mom, then at least for someone else who is suffering with or is caring for someone who is suffering with this awful disease.
Lord, you know how I feel about this disease, you have been with me every step of the way!  Thank you for being there.  Thank you for helping me!  Please continue to help me and give me wisdom as I strive to take the best care of my mom.  Lord, you didn't just give me to her and my dad, you gave us to each other, and I want to take the proper care of her in the best way I know how, for as long as I can, with your help and wisdom.  Please help me to do that!  Please give me the courage, strength, and wisdom.  Please help there to be a cure found for this awful disease soon, because I hate this disease!!

Tuesday, April 17, 2012

What am I Going to Do With You?

Dear Mom,

After the scare of some of those slight changes, and the emergency room visit, you have been better.  Not great by any means, but better.  You haven't choked necessarily, but you say once in a while that something is caught in the back of your throat.  You sniff really hard, and then try to cough, and then sniff in some more.  You close your eyes as if it's hard for you to swallow easily.  Whatever is going on it really bothers you.  I feel badly because I'm not sure how to help you.  You just seem to continue to be getting weaker, and struggling more to have conversations.  I have still been able to go where I need to go and do things I need or like to do.  But.....last week you changed the rules again.  On Tuesday, I got a phone call from Keep Me Home saying that the homemaker/companion was outside and was not able to get in the house.  Well, that made me nervous because that's what happened the other Friday when I came home to you still sitting on the edge of the bed unable to get up.  Oddly enough though, this time, I wasn't quite as nervous as that Friday.  I think the reason is because when I left you, you were doing and feeling fine and eating your breakfast.  But I did leave school early to get home to check on you.  I walk in the house, am greeted by Bella, and look for you.  You are sitting right on the couch in the living room.  You look and say hi to me.  I'm a little shocked and ask what you are doing.  You tell me just sitting in the living yea, I can see that. Lol  But why didn't you answer the door for the homemaker/companion?  You tell me, " Oh, I didn't feel like getting up."  Uhhh....what??!?!!?!  Seriously??  You say, "I didn't want to answer it, they don't like Bella."  I tell you that you can't do that.  You have to open the door, they are getting paid to come help out here.  You ask me about 20 times if I'm going back to school (you have gotten in the habit of asking me that when I get home).  I tell you no, that I'm not even supposed to be here.  Then you ask why I am there.  I have to tell you what happened again, how you did not open the door for the homemaker/companion.  This time you say, "I was sitting right here, I don't know why they couldn't get in."  I tell you it's because you didn't let them in.  Then later on it becomes, "I didn't hear anybody." OK, well, just make sure tomorrow you open the door and let them in.  Even though I know you will not even remember that statement in the next couple of minutes.  Well, I got a chance to relax a little longer before making dinner that night.  Wednesday morning I told you before I left to make sure to open the door for the homemaker/companion.  You told me that you don't like them coming, but I tell you that it's a help to me...although this girl hasn't been  maybe as much of a help as I would like.  She has been doing lots of reorganizing lately.  The pantry... the refrigerator.....under the bathroom sink.....uh...yea, not a fan of that.  You probably aren't either, but don't know how to express it, and I still haven't learned to totally speak up either.  Wednesday afternoon while I was monitoring a keyboarding class, my phone started vibrating and I looked at the caller ID and it was Keep Me Home.  I couldn't answer it then, but later on I listened to the message that said the homemaker/companion couldn't get in again.  OK, this was now becoming a problem.  I had to go to a couple of stores that afternoon, so I did.  When I got home, just as I were fine, just hadn't opened the door...again!  But when I walked into the house it didn't smell right.  I went to kiss you, and checked you and you had stuff on your socks and the bottom of your pants legs and your legs.  I looked in the bathroom and saw that you did have an accident as I thought.  There was stuff on the floor that you tried to wipe up and on the seat of the toilet.  I told you that you needed to go take your bath.  The smell was getting to me and I wanted to get it cleaned up as soon as possible.  When you got up there was stuff on the back of your pants, too.  So I knew I would need to try to clean the couch somehow.  I used vinegar and wiped it down really well.  I went to check on you and to help you because I know sometimes it's hard for you to get everything cleaned well.  While you were finishing up in there, I was getting dinner ready and cleaning the kitchen a little bit.  I knew by that point I wasn't going to make it to church, so I got changed into cleaning-mode clothes and went to work in the bathroom.  I used vinegar, Fantastic with Oxy Power, and Clorox wipes all over.  Then used the Swiffer Wet Jet on the floor.  I took out the garbage and did the laundry.  Tired, but content that I got most of the smell taken care of, I went downstairs to relax a little.  Thursday was fine, and Friday.....well, I got another phone call.  I was subbing for 6th grade all day, sadly.  Not a fan of subbing.  Interestingly enough I had just talked to your pastor at school and he said that he had stopped by to see you.  I asked him if he got in.  He said he was persistent and he did, and had a good visit, but also noticed that you seemed a little worse.    When I had a free moment I called them back and told them that maybe this girl was just not going to work out.  I really feel that was the Lord giving me wisdom, and an opportunity to speak up.  I asked them for an older person possibly who would relate to you more, engage you more, and not just talk you to death.  So, we'll see how this goes!  But you've got to be good for me and open the door when they come, so I don't have to keep getting phone calls while I'm trying to teach...please...  I know this isn't easy for either of us, but it's very helpful.  So, I'm just going to keep praying for that wisdom and help....and strength from the Lord.  I got a spare key made that I am going to leave with our neighbor, the one who brings you to church.  I figure they can go see her and she can help them get in if need be.  Although you have been difficult and a bit naughty, I love you.  I miss the you that I used to know, but I love the you that I know now, too.  You mean so much to me!  I pray for many more years together!  Love you!

Thursday, April 12, 2012

Slight Changes

Dear Mom,

Spring break had some good moments and some not so great ones.  A couple of days in a row at the beginning of the week after you ate breakfast...and then again after you ate dinner, you would start to feel sick.  I don't know if you were eating too much, or too fast, but you would start to act like you were going to throw up.  It made me nervous each time, it was so strange!  You may have done it before, but definitely not as much as you had lately.  You also choked a few times when you were drinking.  You just kept coughing, then you would put your head in your hands as if you were totally wiped out.  Some of your meds had also run out.  So with each of these different developments I decided to call the doctor so we could get an appointment.  They were able to give us an appointment on Thursday.  You were fine in the middle of the day.  A couple of days you even wanted to go out for a ride in the car.  You and Bella enjoyed hanging out in the car while I got some things done.  Then Thursday came and I brought you to the doctor.  I told her some of my concerns and she wanted to find out right away if there was anything serious going on.  She wanted you to have blood work done a while ago, but I never got it done.  It was difficult because all the locations for your bloodwork were at least half an hour away, plus you were supposed to fast before.  So, those two things made for a difficult plan to get that done.  So the doctor's plan was to have us go over to the emergency room at the hospital near her office so we could get many different tests done right away.  Originally, because I had made the appointment at 3, I hoped we would get in there and out of there before dinner time and hoped to go visit a cool cupcake place.  I was so excited because I heard some great things about this cupcake place.  They have a maple bacon cupcake that I am dying to try.  Well, even though we were there at three, and were out of there by a little before 4, we had to go right over to the hospital emergency room.  I am not familiar with this hospital, so that was a little weird, too.  I got a wheelchair and figured out where we needed to go, and got you all checked in.  They got you changed into a gown, set up on a monitor and took some blood.  You were cold, so they found some blankets for you.  After all that they took you for a scan of some kind I think, then you came back.  They tried to take some more blood, but had a hard time finding a vein to get some, but you were a trooper.  I was reading a good book, so it was nice to read while we waited.  They wanted to take a urine sample, but you already needed to go the the bathroom and mentioned to me that you had already gone in your Depends.  You told me that twice.  Not long after you told me is when they came in to get the sample.  I told them you had already gone.  The took the Depends off and they put a bed pan under you.  You just weren't able to go again, so one of the nurses asked if he could use a catheter.  They were hoping to get the tests done as quickly as they possible.  I worried about how you would handle it, and I warned them of such.  But you did amazingly well, I was so surprised and proud of you!  Next thing I knew it was 8 o'clock, and it didn't seem that you were done yet, and poor Bella was at home waiting to go out.  The doctor had come in to tell me that the blood that they had been trying to get from your hand just wasn't able to be checked properly because as it hit against the vial some part of it would break apart and they couldn't get an accurate read.  So she asked if it would be OK to take it from your groin area with a larger needle.  I didn't know how you would do with that, but I told her you did better with the catheter than I could have imagined!  So I gave her permission to try.  You did very well with that as well!  When that was done, I rushed home to Bella to take her out before I rushed back to see if I could take you home.  I have to admit I was getting a little anxious because your doctor said she would see how the tests went, and then determine whether she would keep you in the hospital.  I really hoped and prayed you wouldn't have to do that.  First of all this wasn't our normal hospital, then I didn't know how you would do.  You get so nervous when I'm not right with you.  I was getting a little emotional about that thought.  Plus, you hadn't even eaten since 2.  When I came back, not too long afterward the doctor came in and said that all the tests came back fine, and your doctor said you could come home.  I was so thankful for that!!  We went to McDonald's so we could get something to eat, then finally headed home.  Definitely different than the plans I had, but it's just great to know things were good.  And once again your strength and resolve amaze me!!  So thankful you're OK!  I love you!