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Sunday, January 23

Dad's birthday

Today is my father's birthday and thanks to my brother, he had a good time.  Kevin went up to stay with mom for a little while so dad could get out and about.  This week has been so busy for all of us and I was able to stay home tonight and rest.  Between Dad's trip to new orleans, difficulties with my group of pregnant teens, baby showers for one of them, Mrs. Fischer, Mom, and just the craziness of life, I have not been home to put my two little ones to bed all week.  Last night was the first night and I loved it.  Jason and I actually got to settle down around 9 to watch a movie together.  So relaxing.  The sad thing is tonight I was also getting to stay home.  As I tell my oldest to go pick out books, she asks me if I am going to Gigi's.  With all the enthusiasm of a school girl, I shout  out No I am staying here to read to you and put you to bed.  Out of her mouth comes a sad response-oh ok.  I wanted you to go there so you could bring me home a surprise...I tried so hard not to laugh as I realized that already she is ok with me not being home and would prefer it if it means a delightful surprise sitting on her pillow ready for her when she wakes up...I may have to stop the surprises for awhile, a whole week of them seemed to have slightly spoiled her. 

Thankfully this week is slightly less busy.  All I have on my agenda is to observe a child for tutoring, A meeting for my teen mothers, visit my grandmother and Ms. Fischer, rent out my friends house, go to church, and spend time with my mother.  Hopefully of course I will get the delighted visits of both my brother and father. I love slow weeks.

Ah as far as mom is concerned...It seems she has taken a step down on her "stairs" of life.  Despite dad being back, she still is not able to do some of the most basic functions.  Her short term memory is going-I will tell her something and a few minutes later she does not remember.  When she is interested or focused, she still remembers rather well.  She remembers my cousin visiting, she remembers getting upset over a lamp, she remembers what she watched on Alli McBeal.  She may forget if you tell her new information like what happened at the Dr.'s office.  She expresses more difficultly recalling words and it is getting more difficult to understand what she wants.  She still fixates on it and will not let you distract her until she tells you what she wants you to know.  She has a general knowledge of what is going on in the world but her interested in Obama and Fox news has decrease significantly.  My mom also has a hard time with loud noises, more so now then before.  When both children come over, it is too much for her and she short circuits.  She also has become very possessive of time, people, and items.  Mackenzie wanted some orange juice the other day and my mom would not let her have any until she realized that there were three little containers of it left.  When I slept over, she did not want me talking on the phone even if it was to Jason.  She gets jealous of the attention that the children give my dad and does not want him even talking to Mackenzie when she is around.  IT makes for pretty stressful encounters when he is there since Mackenzie wants to be with Jeep as well.  She is jerking much more with her arms and legs, trembles occasionally, and loses her grip with things. She cannot understand depth changes and directionality.  Trying to get her in the tub or shower is very difficult and even harder to get her out. She also does not know how to use the toilet, eat her pills, drink from a cup, or follow basic directions.  If I tell her to sit down, she cannot.  It takes her a few minutes.  If I tell her to come to me, she says where and looks confused. She no longer grooms herself at all, no brushing teeth, no wiping up after she uses the rest room, no washing hands.  We have to remind her to wash her hands and then she gets upset because she thinks she does it all the time.  She cannot work her dvd player or tv anymore, cannot answer the phone or call anyone.  She cannot run her washing machine or dryer, and cannot put away dishes.  She is losing the ability to drink through a straw.  Another weird thing is that her vision seems to give her difficulties.  She  will ask for something that is right in front of her and does not see it.  It seems that although the risperdol is working as far as keeping her calm, it is definitely affecting her ability to function. But without it,we could not take care of her at home....
Dad has started treating mom a new way and she is responding to it well.  I am proud of him for understanding and figuring out some of the difficulties she had with him.  One of the greatest things that we all share with one another is communication.  For example, my brother never had any confrontations (or relatively few) with my mom.  For months I told him it was because he did not go up as much as I did and once he did, she would react more aggressively.  Well after five months of Kevin going up there, she still did not act any different with him around.  It made me observe him and what he did and realize all that I did that was wrong.  I was able to share it with my dad after I tried some of the things that Kevin did.  It worked.  He had an understanding with mom that could not be matched.  It took Dad a while to understand what we were trying to say, but he never got upset with us for telling him how to do something. He was open to our suggestions especially since they work.  I was open to trying something new as well.  we all realize that we may not know everything and it is important to let another person give a fresh perspective.  Each person and family is different and what works for us may not ever work for another person.  But we have learned (mostly from watching Kevin) how to handle mom and what we need to do.Keep us in your prayers.  Nite

Friday, January 21

Somewhere over the rainbow

So dad had a great time in new Orleans and made it home safe.  I must say that this week went easier than I had expected.  With the exception of the first night when mom was awaiting dad's phone call to say he was safe, the entire time was relatively easy. I learned quite a bit from being up there, mostly how to keep things calm. Mom is happy when she is getting attention and feeling special.  When she feels like she is a burden or that she is inconveniencing you, she reacts.  When she feels like she is being ignored, she reacts.  She notices the intonation of frustration, the lack of eye contact, the body language and it hurts her.  Then she responds by getting angry.  That is the only time she reacts.  each time she needs help going to the bathroom, each time she wants the temperature to change, each time she wants something to eat but doesn't know what, she needs assurance that she is not bothering you.  It is hard especially when you are in the middle of a phone call or the middle of a project.  It reminds me of my children.  They come first-no matter what I want to do, I cannot do it when my children are up.  I must cater to their every need with a happy face or I pay dearly.  Ever notice how children feel your frustration and respond accordingly.  It seems the more frustrated you act, the worse they become. The same held true with mom.  She is confused, scared, and needs attention.  It is not her fault that she does not want to be by herself anymore.  She has resorted back to becoming a child or baby and I realized she needs to be treated as I would treat my children.  She dedicated herself to raising me with attempted patience and I owe her the same courtesy.  By scheduling time for myself and preparing mom for it, she adjusted and let me do some things for ten to twenty minute intervals.  I also made sure to take advantage of the time when she napped.  Just like my children.  In fact, I was surprised at how similar it was-I did all things when she slept or was distracted with a project. By complimenting her, praising her, reassuring her, and loving her, she didnot have one episode.  Despite being exhausted, both Kevin and I enjoyed being with her.  We played the wii with her (she would shake her arm and I would bowl behind her while Kevin praised her), we danced with her, reminisced with her. Tonight she and I danced to the song at the end of Meet Joe black.  Somewhere over the rainbow and what a wonderful world.  She was so happy and so snugly.  I placed my face against hers as we swayed to the music.  Her smile on her face was wide and she was at complete peace.  Her eyes actually sparkled.
I think to my day and find myself comparing her to my children more often now.  As I wake up and am assaulted with "mommy I want juice, apple juice, can I have the pink cup, Eggs please, I need help with the bathroom, mommy where is my dress, and fifteen more requests within a five minute time span, I cannot help but think of the requests my mom makes in rapid fire motion-kim I am hot, I am cold, I need some water, can I have a straw, I have to use the bathroom, I am hot, I need a shirt, where are my slippers. How can you get frustrated with that-especially when I think that this could be me in twenty years.  I have gotten my life insurance in order and my long term disability.  Now to save up money for the genetic test to find out if I carry the Early Onset Gene.  It is all in the Lord's hands; I am just grateful that He has given me the joy, patience, and love for caring for my mother.  I also praise Him for giving me my brother, my best friend, who has risen to such esteem in my eyes. If only I can get him to believe :). I am so thankful that we get along so well and I owe my mother for that-we were not allowed to fight...ever while we were growing up.  I can only remember one time that we actually argued and we were made to sit at the table until we were friends.  My mom gave us each a piece of paper and pencil and told us to draw each other.  By the end, we were giggling over the artwork we had created.  Whatever technique she used, it worked.  To this day, my brother and I are polar opposites and that suits us fine. Maybe that is why we work so well together.  I love you boo and thank you for everything. 

Wednesday, January 19

Staying at mom's

So tonight Dad is enjoying the company of others in similar situations as ourselves and Kevin and I are enjoying the company of my mother.  She is completely out of sorts tonight and fearful.  I came up at 5:30 and she was so excited and happy. Kevin has that effect on her more than any of us.  Even though she was up late last night with him, she was still interested in going out to dinner.  We had a fantastic time and ended dinner in a pleasant mood.  When we got home, I needed to shower-It was quite strange to shower and mom standing there staring at me.  It was slightly unnerving.  What was even stranger was when she decided to shower with me.  At least she was clean and the bathing was easier than usual-just mentally bizarre.

We started watching sense and sensibility but she was so distracted.  She was waiting for my dad to call and was starting to get panicky.  That was all it took to change the evening.  The longer that he was "missing" the more distressed she became.  By 9 she was scared that something happened to him on the road and I tried to call him three or four times.  Finally at 9:30 he called and that phone call helped her out greatly.  She still has that desire to hear from him to know that he arrived safely-I mean to this day she makes me call her when I leave her house to let her know I made it home ok.  I must remind dad to check in at least twice a day to make her feel like he misses her. During the phone call, she felt sad because she felt like Dad wanted to talk more to me than to her.  I was able to pass the phone back and Dad did a great job making her feel better.  She does not like dad being gone for sure.  She says it is scary and unfamiliar.  From that point on, she was very fretful and I could not leave her side for a second.  She needed water, needed me to help her go to the bathroom, needed me to go with her for the dog, needed to get a snack, needed the air adjusted, needed new clothes, needed to wash clothes, needed new socks, needed a new lamp, needed her old lamp, needed....get the idea.I tried to call my husband to say hello and good night and she could not take it. It made her nervous.  I am now sitting here...well she would like me to watch another movie so off I go hahaha

Monday, January 17

Dad is off

Well we shall see how this goes-he has not left and we are already experiencing some issues.  For those of you that do not know, my dad is getting to go on a short mini vacation.  He leaves tomorrow morning bright and early and will be back after  9 on Thursday .  Kevin and I will be altering shifts until his arrival.  Mom started getting very upset tonight and I headed up there.  She decided that Dad was not going to go and went to hibernate in her room.  We were quite worried about it and Kevin decided to save the night by coming up to the house and staying the night. So rather than have me head up there in the morning, Kevin spent the night there.  What a saint!! Thank you to Kevin for saving the day again and allowing for dad to go on his trip.We shall see what the next few days bring.  Keep us all in your prayers :)

Wednesday, January 12

Pranking the internet

What a wonderful week this is turning into.  Jason has been working like a crazy man and I am getting used to being a "house wife".  We had a meeting for my pregnant teens on Saturday and it went rather well.  The girls are starting to complete their schooling and getting motivated.  I am worried for a few of them but just keep praying that God will lead them.  Today, I received a blessing from a wonderful woman.  On my front steps were three boxes of unbelievable clothes for my children.  The ironic part is that they were just my style.  I love my children to look well dressed and well groomed.  If I could afford to shop at Gymboree, Gap, and the children's place, I would.  As I open the box, there were button down shirts for Connor, gymboree outfits for Kenzie-such beautiful clothing.  Thank you Anita for your thoughtfulness and fantastic taste :).  Gifts like those help us save so much and give that money to others in need. Such a fantastic blessing especially after the week I had.  One of my adopted "children" had lice and I spent hours picking out nits and doing treatments.  Thankfully my house has been spared but I am diligent in cleaning every area and treating us as though we had it.  I do not know what I would do if my family got it.  Yuck.  I will say that it is hard to keep opening up my home when I know that those critters are near.  I also noticed that on days when some come visiting, I find one or two little roaches that have hitched a ride.  I have since banned any backpacks, jackets, or other loose items from entering my house.  Out of all the nuisances, that is the hardest to deal with.  I am neurotic about insects in my house-my dog and cat are on preventative meds, our house is so well sealed and protected that rarely does a bug get it.  Pray that I can overlook the critters that ride in on my "children" .  I am looking forward to this weekend to have a day to relax.  It seems that there is something everyday and it never stops.  Tomorrow we have a Dr. Appointment and will keep you posted on how it went. 

Tonight went well with my mom. She is so happy that my little cousin is here-this young lady was like her other daughter-her heart was taken with Heather and she always felt like a mom to her.  In fact, the way Mom felt about Heather was with more love than I think she had for either Kevin and I.  Having her in town has made my mother so happy and it makes me so glad.  Heather was the fair haired beautiful feminine angel that my mother always wanted.  I was always so headstrong and stubborn-def not the favorite child.  You think I kid but I don't.  My determination made my mom feel unwanted or not needed and she hated that.  In fact my only nickname (peevzy) was for pet peeve. The joke was that Kevin was the pet and I was the pet peeve thus peevzy.  I hold not sadness or jealousy, not feeling of resentment.  I am thankful for the fact that mom felt the way she did because it made me the person I am.  I can remember as a child of six wondering why she was so distant or disgruntled with me.  We all had these special plates that divided the food into three sections.  I had broken mine when I was 6 on accident but from that day on, was never allowed to use anyone else's special plate.  This bothered me so much that Kevin would slide his plate to me only to have my mother tell him to take it back.  It was only a plate but the fact that I could never have one like the rest of the family used to drive me crazy. Ah those good old days :)
So tonight went so well and I had such a great time.  Mom was so excited to do her little prank that I feel I must share with you what we are planning to see what everyone thinks about it.  The following idea is my mother's and we are quite sure that it will cause an internet reaction.  So much so that I fear possibly the ramifications of it.  I am testing it with all of you to see how you feel about it.  To understand the prank you need to understand my mother.  She has always been a prankster and sometimes not the nicest pranks.  She once hid from the house when my brother was 8 to make him think the rapture had come.  Like I said, not always the nicest pranks. Even last April fools day some of you will remember that she actually pranked me.  She called to say that two men had come in and taken her piano.  That they said they bought it from my father.  I was so scared that she had just been robbed and was about to hang up and call 911 when she said hahaha it is that day.  I was floored!  So here is her idea.
She wants us (or more specifically my brother) to tape her doing everyday things-eating, washing her hands, explaining a movie, trying to sit down etc.  She wants my brother to post it on the internet as though he is mocking her-like he tapes himself saying watch how my mother cannot do anything and fade into her trying to do something.  She wants to do this over a course of time and let the internet community get angry and when enough people watch it, she wants to post a video saying Just kidding this was my idea.  Her idea is since this disease is so horrible she mind as well get some humor out of it.  I mentioned that after this she could tape herself trying to describe a movie and the first person who guesses it will win something like a dvd of the movie or some other item.  She loves the idea and is so excited to do something that will bring fun into this destructive disease.  Now I am fearful that many will think it is cruel or heartless but only those that have experienced the frustration and devastating effects of this disease could understand the irony of this.  The best part is it is her idea-she wants people to know she is still here even though she cannot understand how to sit on the toilet (the newest difficulty) or that I cannot come out of the phone to turn off the T.V.  So what do you think?  morbid? heartless? silly? humorous?  Ultimately, we will do as she wants since our goal is to see the smile on her face.  But I thought before we actually do this, we would create a discussion on some forums.

Sunday, January 9

Quite a bit of time has passed

Happy new years everyone and I hope that you had a wonderful Christmas holiday.  Jason and I traveled up to visit his family and spent a great deal of time in the car.  It was enjoyable despite the traveling.  Amazingly, I was able to pull it off without my mother knowing. This new year is already proving to be completely different from last.  For some time, we have been praying for an employment opportunity for Jason.  My cynical self told Jason that in this economy, no construction company would hire him.  Well once again I was proven wrong.  Jason has received a job with a company that will still allow him to work on his own and with Works in Faith.  So he has the flexibility to continuing working and can pick up the hours if he needs to.  From 32 employees to 4 in the last few years and yet Jason got hired.  The weird thing is they were not even hiring.  I also will start a job sometime in the near future.  Mackenzie's teacher is going on Maternity leave and I have been asked to fill in for the six weeks. The best part is Connor gets to go there as well. It is in the morning so it will not interfere with my other obligations to the teen mothers, our sweet ladies, and the other stuff we do. 
Since coming home, I feel as though I have hit the ground running.  I find myself having a hard time catching my breath and miss the serenity of the holidays..  While I was gone, my phone hardly rang and I actually was able to enjoy my kids.  After driving home 13 hours and getting four hours of sleep, I kid you not, I had a houseful of people.  First my brother which is never a bother and always a delight.  I did  not realize how much I missed our coffee talks.  Next Jon-a neighborhood teen, then Gloria and finally my father.  Soon after, Betty (one of our pregnant teens) brings with her a new teen that also is pregnant.  Finally another little one shows up to visit.  Let me remind you this was literally less then 12 hours after being home.  
Mom seemed to do well while I was gone. She seems to have plateaued for the moment and does wonderful as long as her routine stays in place.  It seems hard for Dad to adjust to a routine since he has always been a free spirit going with the flow of things.  Unfortunately, Mom is in such a state of confusion that not having predictability really messes her up.  I think it is because everything is so scary, every task so daunting, every action such a struggle, that not knowing what will happen next makes it that much harder.  As I left her house tonight at 12 am, I realized that she will be up until 4 or 5 this morning,.  She has gotten into this horrible habit of staying up late and falling asleep with lights on and tv on.  She can no longer put her movies into the dvd player and if she feels bad about waking my dad up, will watch the same movie two or three times at night.  It takes her half an hour to figure out how to hit the play button.  She also has accidents and urinates in her pants because she cannot take her dainties down.  I told Mom that on my movie nights I will start sleeping over because she is afraid now.  I am hoping that with this new year, we can get a predictable routine in place.  Maybe after Dad's quick vacation we can do it.  Although I am sure Kevin will be in dire need of some time off.  I think he will be getting "sick" soon.
 I am worried about him more than any of us.  Kevin is on the phone with mom so often.  He sets her appointments up now, takes her to the drs, the hair stylist, soon to the dentist and obgyn.  While he is with her, he spends every second with her.  She needs a drink, he gets it. The air is hot, he pretends to change it.  The air is cold, again up he goes.  She needs to defecate, he goes with her. Every two minutes she wants the movie stopped so she can say or do something.  There is no break when you give her your attention.  He does this for five to six hours everyday devoting his entire attention to her.  Then home he goes to his dog with only two friends to vent to, his sister, and his father.  He has no other life to escape from this demanding life.  Me-I go home to my family, Dad can escape by going to his work or visit his family.  He can escape in his house by going on the computer. 
But we are so blessed to have a team and it brings us closer together.  We are probably closer than most families.  The other blessing is that mom is actually easier to handle then ever before.  As long as you give attention to her, she does fine.  Ah it is late and I am completing rambling.  Must get sleep and my little girl just came down ...More later...
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