Friday, May 27

ah Life

It is an embarrassment to write this or even try to justify myself but here goes. For those of you who know me, you realize that I like to have proper grammar and spelling. Occasionally I speak incorrectly, but it is not often. I was proven wrong by my brother on a convo about good vs. well today, but generally I have extensive knowledge in this area. However, it has come to my attention that often I overlook many grammatical errors and misspellings. I do realize this and yet I do nothing to change it. Why is this? Well, with my busy life, I find it harder and harder to get on my laptop and actually blog. It is important for me to do so and I attempt to make time. The time unfortunately is in the late hours of the night and often my brain is at its end. I partly enjoy it because I write freely and completely unguarded. I also do not have the time to reread what I write. It is just my brain releasing everything into my fingers and they run with the keyboard. Sometimes it is 2 or 3 in the morning and I finally realize that in just three hours my husband will be awakening followed by my children. It is in that moment that I end abruptly and shut down my computer. So please find humor in my strange sentences that sometimes imply and entirely different meaning. Although I have strayed away from expressing my crazy life, I will indulge today. Here is my week in a glance. If anyone can compare please let me know. I would love another person that runs almost nonstop.

So we will start with Friday last week.

Friday June 20: I awaken at 7:15 get my children up, feed dog & children, get dressed, get to my daughter's school where I am subbing in her class for a few hours. Stay at her school until 11:30 and head to Grandma Fischer’s (a works in faith client). As I am ordering food at Wendy's, I pull out and get hit by a young teen driving a new red camaro. Police arrive and we leave an hour later. By now it is too late to head down to visit Grandma Fischer so we go home. I arrive home and get everything together to report the accident. Two clients call with different issues, two of our teen mothers stop by and need rides. I take them to where they need to go and run back home.  I quickly tidy up the house and get ready to head over to my mothers. I bath mom and visit until 11:30.

Saturday morning hubby had to work for Works in Faith doing plumbing. Kenzie wakes up with a 102.8 fever. I went to Grandma Fischer's and spent two hours with the children and her. Traveled back up and went to visit another client. At home and a person comes to the door to ask for gas. Jason is home now and helps him out. Neighborhood teen stops by and visits. He leaves and another neighborhood teen comes by. Kenzie still running super high fever but happy as can be.

Sunday Kenzie still sick, Church in am and nothing else major all day. A few teens come by to visit but that is all.

Monday: Dr for kenzie in morning, still super high fever. Run some errands, clean the house, check on friend that had to go for surgery, pick up teen mom to bring to dr, get home drop off children with J and go to teen mom meeting. Lead the group in a devotional and discuss child development until 7. Drop off students and check on friend that had surgery. Teen mom comes by and stays for an hour; another teen mom comes and stays for another hour.

 Tuesday morn: Kenzie has strep so I keep her home one more day. Pick up my friend who had surgery and bring her to my house. Care for her, her son, and 3 month old baby plus my two. Run some errands, pick up dinner from someone who cooked for us, pick up friend's other two girls, go home. I do homework for girls, watch baby, care for the mother, and keep chaos from breaking out between 6 children. Drop off family and go to mom's until 11:30. Come home clean up and prepare for next day, blog until 3.

Wed: wake up at 7 take kenzie to school pick up friend and children run errands go to house care for baby, mom , my son and her son. Someone drops by to ask for help with SSI case another friend stops by for coffee. Kenzie is dropped off by dad. Go pick up the other girls. Six children again. Teen mom stops by another stops by, and another stops by. Jason comes home. Knock on the door and two gentlemen need a ride to church. One has not eaten for two days so J gets them food and gets them to church. I bring my friend and family home at 7 and off to hospital for one of our teens that is having complications in hospital.

Today repeat of yesterday completely except that we had April to help watch the children with me (Thanks April) Go to hospital again and get home at 11:30

. Now tomorrow I get to drop off kenzie, pick up the family drive to Grandma Fischer’s, take a teen dad to job interview, come back to watch friend's daughter go in a limo ride for school, pick up kenzie, sit for a bit, go pick up girls, check on teen mom in hospital, six children in my home, then go to my mothers. Thanks for letting me write such a boring blog tonight. Just want to know if anyone else's life is as crazy. I go from 7 in the morning until 12 at night almost every day. This week alone 14 people have come to me in need of help and it has only been four days. I must say though that God sure gives me opportunities to be a good disciple for him and I am grateful for the chances to be a witness for him.

Wednesday, May 25

Another Sweet Movie

I HATE SWEET HOME ALABAMA.  I am not sure if I can stand the thought of watching that horrible movie ever ever again and yet I know that I will be subjected to its horrible rendition of a southern accent and silly oneliners that make no sense.  There are so many times in that movie I just sit and wonder.  Tonight was such a depressing and sad night.  My mom was completely lost and miserable.  It has been a few nights now that it is complete torture to pick out the movie and watch it.  She hardly says 15 words the entire time; most of it consists of I have to pee, I donot have to pee, I dont want this, I need my drink, where is my clock, I cannot see my clock, I need my clock, and many other sentences about this digital clock that she looks at to Tell the time except that she cannot tell time anymore. But woe to the one that moves the clock ever so slightly to the left or right.  It trips her up for a bit.She is much more agitated and knows it. She told me to night in the brief conversation that we did have that she hates herself and what she is.  She always feels nervous, anxious and scared.  She wants to be strong but is afraid of the disease.  Tonight I noticed my mom's shuffle has become much worse and now moves at a snail pace.  She could not follow any command to night, not sit, not turn, not drink.  It is now at the point where I look at her and find myself wondering how long.  That in itself is such a huge question with so many feelings.  This one question implies so many more:  How long does she have left to suffer and continue to deteriorate; how long does my father, brother, and self have to care for her; how many more movie nights will I have the honor of attending; how long do I have to spend time with my mother; how long do my children and husband have to sacrifice their nights without me; How long does Kevin have to put everything on hold to care for his mother-his career, his love life, his social life; How long does Dad have to wait to start a new life; How long does my mother have to feel so much pain; how long does she have to spend Saturdays with my grandchild; How long until my children will no longer get the hugs and kiss from my mother; how long until she can no longer play chase (well her version of it anyway).  Amazing how two words can convey so many emotions, questions, wishes, and frustrations.  That is what this disease is:  a world of conflicting emotion that leaves everyone involved in a waiting game where there are so few answers and so many problems
.  I watch my mother and picture this is what she feels, this is what she is thinking...
As I sit here watching the t.v., I question why I am here.  I look over and see my daughter but am unable to express the love I feel for her.  I feel agitated and yet I cannot understand why.  I am glad to see her and even happier to see the movie, but I am scared.  Maybe that is why I act the way I do.  I am scared she will not like the movie I choose and so I cannot make up my mind.  I want to please her but I do not want to break my routine. I choose two or three movies hoping each one will be one that she likes and that I will enjoy.  Each time she puts it in, I see it and remember that I do not want this movie.  I realize that this is the last movie I will see before my "sleeping movie" that I want the best one.  I am so fixated on getting to my movie that I fear everything until that point.  I know that at some point I will take my pill and try to use the bathroom but am unsure when that will come.  I cannot stop thinking about it as the movie plays.  There are so many noises from the tv in the other room, daisy barking at something, Frank talking to Kim as he gets ready to leave, the movie, the air conditioner, and even the people outside.  I do get distracted and find it even harder to concentrate as all these noises surround me.  My mind is so jumbled that the simplest word takes my utmost concentration.  As I sit her thinking about what to tell her, Something distracts me and now I am lost.  I lost my place in my mind and in this world.  This makes me even more nervous. I know that i wanted something, but know not what.  I give up and surrender myself to the screen that is playing in front of me.  I am not into the movie, really my mind is just racing with everything that does not make sense.  Every now and then I can reach out and grab a thought.  yet as soon as I try to share it with her, it resumes its flight away from me.  I try not to think why me, but it happens.  It is easy to find sadness-it does not take a lot to feel it.  I do not have to understand anything, just feel.  To be happy, I must find joy and humor in something.  Jokes hare harder and harder for me to  understand and I often misunderstand what someone is telling me.  The movie is finished and now i am completely nervous.  I know that I sleep alone, what if I fall off the bed, or cannot find Frank.  This makes me so upset and so frightful.  How long will I have to sit screaming before he can hear me with his hearing difficulties.  How will I go to the bathroom or get a drink.  my daughter tells me to go to the bathroom and I feel like I have to but do not know.  I try to walk but my legs do not listen to my brain anymore.  I sort of shuffle-it is hard and painful to life my legs, my muscles quiver and are not used to such  exercise.  I am forgetting what I am supposed to do and ask her. I am reminded that it is the bathroom and I continue.  On my  way there, I see so many things that remind me of something I thought of earlier.  I want to stop and tell her about ti but cannot because I must complete this task.  I make it and look at the toilet but it does not look familiar.  It seems so long ago that I knew what to do.  She is telling me to sit and I know that I need to sit.  but how do I do that?  My legs do not want to bed, plus it is scary.  Is there really something there as I bend at my knees.  I do not see it behind me so how do I know that I am not going to just fall down.  I feel her hands guiding me and although they scare me because she pushes me too fast or puts pressure on the areas that need to move, I t helps me realize where i am and what I need to do.  I sit but now what.  I have no idea how to make my body do this one task I have done a million times before.  She distracts me and i am able to go after sitting for a long time.  Without thinking I get up and start to walk back to my bed.  She tells me to sit and this time it is much easier.  I know that I must take my pill and I see the two that she has laid out on the bed.  I cannot remember what to do.  I try to grab one but my fingers do not pinch like they used to.  I fumble with the pill dropping it a few times.  I cannot believe this is my body that is failing me so I blame her for not putting it int he right place.  I finally get it in my hand and give a satisfying "there I knew I had it" Now what.  I hold the pill and she tells me to put it to my mouth. I touch my mouth after putting down the pill and realize that is not right.  she tells me to get the pill and I tel her I did.  I am confused and she is telling me too many things.  What was I doing.  ah yes the pill.  I grab the pill and put it to my mouth with no one to tell me.  I just need time to process my own thoughts and not someone else telling me what to do.  And by time, I mean sometimes minutes not the mere few seconds that people give me and expect me to complete the task of thinking and doing.  I now have  apill in my mouth and need something to drink but have no idea what to do.  A straw is put in my lips and I am told to drink.  Why am I drinking when I need to get rid of this pill.

Sunday, May 15

tears are falling like the rain

Last night I was able to go on a date with my husband.  We had a great time at dinner and then I decided to return the phone call from my mother.  Even though it was our first date in a very long time, my wonderful husband offered to go over to my mom's house to help her out.  Mom was stuck in a rut and Dad needed some distraction to get her happy again.  So over to mother's house we go.  1/2 hour later, she has used the restroom, taken her medicine, picked out her movies, and turned that scowl into jubilation. 

Today I found a random dvd and decided to see what was on it.  I have not stopped tearing up.  I just finally made it through the entire video and that is only because I am editing to upload.  As I was viewing this video from 1998 (or 97), I could not stop thinking how we have been robbed.  She had such life and such zest; now we are left with a zombie like human that cannot stand what she has become. This is during christmas and the first five minutes are her instructing my father how to take the video.  She asks him if he is holding it right, zooming in, getting her opening the present, and many other orders.  I edited it to this part because it just seemed somehow the best begining spot. I will leave you with this video of my mother back when she had complete connections. Dad, you may not want to watch, it might make you cry like you haven't cried in a while!!!!

Saturday, May 14

memory people

My brother has recently discovered an amazing network and group of people called the memory people.  I must say that it has been a wonderful resource for him.  My dad has the Alzheimer's Spouse, my brother the memory people, and me......Why do I keep things inside?  Maybe it is because I have this blog to talk to...That was one reason I started this blog, so that friends and family could keep up with my mother's progression without me having to explain or discuss her disease.  It got to the point where I hated all the pity, all the conversations about my mother's disease.  The strangest part is once you start talking, there is so much to say that you never shut up which leaves people sorry they asked you in the first place.  It seems like trying to explain anything takes so long because she is sooo unique. 

 Tonight was amazing and she was so cute. We started with washing hair and sponging her off.  It is official that we are no longer shaving her arms or legs or any other parts.  I am amazed that my mother with all her vanities throughout her life, she has finally given up or forgotten that she loves her legs shaved.  She has officially lost all her pride and vain attitudes that plagued her for her entire life. After her shower, her hair dried funky and I made a comment.  Her response was eh I don't care.  Wow, she is finally free from her appearance and I am so happy for her.  It is strange though because it was part of her personality since I can remember.  Mom did have a much harder time recalling words and expressing herself tonight.  She would get so upset since most of her conversations were ...that thing in there that does that in that you know the thing.  That girl and ummm the girl or the boy.  So sad.  Then she got on the phone with my brother and she told him to have fun.  After that she kept saying how happy she was for him, that he is with his old friends probably having fun.  She actually told me to pray for him so he could get the thing that makes you pay (He went to play poker and she wanted him to win big).  She also stepped out of her box and I was able to watch two completely random movies: both horrible though-legally blonde and hope floats-horrible only because I have seen them soooo much. She started getting lovey dovey with me telling me how much she loves me, how wonderful I am, how much she misses me.
  I was able to actually talk with her about my tummy (it is a basketball right now and she noticed, actually asked me what was wrong with me and was I prego).  I told her it was probably my uterus and she told me to "let them look at it in the tv.  I think I will take her advice and ask my doctor to do an ultrasound.  I am in such pain these last four days I truly feel like I am 8 months pregnant (trust me I am not) and it is getting annoying.  I am at the point where I think I do not want to wait for my hysterectomy but rather want to do it now before things get much worse with my mother.  For those unsure of what I am ranting about, we think I have adenomyosis as well as needing additional surgeries.  The only way to fix it is a partial hysterectomy.  I was ok with waiting until I realized that I am probably not going to get my tummy flat until I do it.  Now I know that sounds semi vain and for those of you that know me, you realize I am not a vain person.  I do however care a lot about having a flat tummy. It has been almost six years since my tummy was flat and I am ready for it to be again.  Well after talking with my mother, she has promised to take care of me.  We decided that as I am healing, I will lie in bed next to her and together we will shout Frank/Dad, help us. We need to go to the bathroom, or we need something to drink, or we need a new movie.  We may even ask him to cook us dinner.  I am sure he will lovvvvvvveeee my movie nights then hahahahahahaha (dad are you cringing slightly). She found great humor in that and could not stop laughing.  The other unbelievable thing tonight was her recognizing the smell of bleach.  Dad used a bit to clean his shower (I mean a very little squirt).  The bathroom is on the other side of the house.  All of a sudden mom started to whig out because she smelled that stuff.  I played dumb and went to look for it about 15 times.  Finally I opened up a thing of coffee and brought it into the room.  After fifteen minutes she looks at me and says maybe it wasn't that stuff that gas no that bleach but instead the thing we drank earlier.  I said coffee?? and she said yes that is it.  Crisis adverted thank goodness. 
So recap:  She is deteriorating more with her speech, I think she is starting to forget uneventful things or conversations and her desire to look good.  She is able to sit when she does not think about it, follows one step directions if given time to process what you are saying, and can still take her pills.  She is curling up more when she lays down, her right arm is constantly bent, and her toes do not move well.  Her hearing is amazing as is her sense of smell.  Her taste and sight seem to be lacking.    She is still up to date on current events (kinda-she gets it but doesn't care about it any more).  She is calmer and less agitated now.  So for all of you who have someone that is aggressive or angry, it does pass.  It might take awhile, but one day, the anger fades (perhaps as more holes or neurons die)the violence disappears, the aggression, verbal abuse, and screaming seem a distant memory.  I never thought she would be this serene and gentle child.  I look at her as a mother taking care of her daughter.  She is so passive with this look of complete trust and faith in me.  I look at her and thank God for the peace He has bestowed upon her.  Despite the horrid nature of this disease, I see God at work in all that she does and all that our family goes through.  I know not His plan nor His reason, but it is with complete devotion and trust that I follow the life He has given me.  I often feel overwhelmed with the path He laid out for me but when I surrender to Him, my life finds meaning and purpose and I feel as though there is not a care in the world.  Good night to everyone and thank you for your support to my family.  It means a lot!

Saturday, May 7

Wondering what will be

Sorry once again for the lack of writing; I have felt slightly uninspired, slightly more relaxed, and definitely trying to stay away from the computer.  It seems that my life had spiraled out of control for a few months and I have spent the last three weeks taking a reprieve from all the chaos that exists outside of my family. Not to mention that Connor has decided to become a typical two year old and can throw some tantrums that, frankly, make me want to run and hide.  Realizing that this is not an option, I try to remember my many years of college and classes in behavior modification that seem to complete disappear from my mind when dealing with my own son. Why is it that I can handle an entire room full of children and make them obey and yet my own son sits in the living room shouting nooooooo and bringing on wails of disobedient rambles.  Mackenzie never had the terrible twos, I had hoped that Connor would have surpassed this as well but it seems not the case. Fortunately for me, I am much more stubborn than he and will win this battle .  I think it is from such an exhausting trip to visit my in laws.  Yes I decided to take a week and drive to visit my husband's family.  My dad let me take his amazing conversion van on a test drive for a weeks worth of driving.  I made it there in 18 hours and we drove straight through just me Kenzie and Connor.  Jason had to work and also was able to refinish our floors and paint Kenzie's room.  Overall my children made the 41 hours in a car within the week with amazing decorum.  I think the exhaustion kicked in when we made it home but what a wonderful trip.  Visiting my mother in law always lifts my spirit.  It is like spending a week with my best friend and I always hate leaving.  She has become such the voice in my head and I am blessed to have such a wonderful relationship with her. 

The weirdest part of the trip was the change in my mother in such a short time.  We are definitely seeing her progress even faster than before.  We are cursed and blessed that she still understands what is going on.  I fear that she will still be aware when she become bed ridden.  I hate the thought of her understanding that she is no longer free but stuck to a bed.  It does not seem too far off and that scares me.  I have been going up a lot the past week or two, just surprising her with visits and it is amazing to see her face light up with joy. 

She rarely is happy now so I cherish the moments when she is. She is still aware of my children and wants to play with them.  She just does not know how.  Connor seems to be unaware of it and still likes to play chase with her.  She tries to run after him, but stops mid way like she forgets how to play chase. This other video was taken a few days before I went on my mini vacation.  She did the same thing the other day, just stops in mid action

She also is having such a difficult time speaking.  Here are two videos, the first is her the day I got home and she is speaking so well.  I cherished that night because she was so full of praise and love towards me.  The second was Tuesday night of this week.  It is amazing how little she was able to speak or take her medicine.The first one she was pretending not to remember me since I was gone for so long.. The second she was talking about the fact that she was afraid I would get hurt in the new van and that my brother did not watch two nights of movies (instead he was over almost every day and slept over one night...she was hung on the two nights of movies lol)The third video she is making me take money out of her drawer which I put back immediately after but isn't it amazing how she can process these things.
Now here is one from this week where she is trying to take her pill

and one final one from the week before we left.  I put on high school musical and she started to dance with Kenzie.  There are moments when she is so aware so able to process everything around her and then in an instant it disappears.  She becomes zombie mom and is totally oblivious to her world.  She gets confused and tired.  Through it all though, she is with us and is able to express her feelings and how this disease is affecting her.  She mentioned tonight how far away she feels.  It is like she wants to do things but she is so scared.  Everything scares her, walking scares her, stepping over things scare her, the shower scares her.  She is afraid of the doors, of certain noises.  She told me tonight how she hates feeling scared because she was never afraid.  She hates feeling pain, being nervous, and basically her life.  She is trapped in her bed and in her room watching movies not because she likes them but because she is safe and her mind makes her.  She is tired of watching the same movies but her mind won't let her change them.  She is able to express all this too me.  She also asked me about my surgery (prolapsed everything and adenomyosis) and when I was getting my genetic test for alz.  I mentioned that surgery is on hold for now and I am looking at joining some researchers in testing for alz because it is cheaper than doing the test myself.  I am amazed at my mom and am so proud of her for the way she is handling this disease.  God truly left us with an unbelievable mother.