Monday, March 28


I did get buried under all that fabric, but now it has been lifted off of me and I may resume my life :) Life has been quite crazy for me and I realized after I wrote my rough draft (actually my brother pointed out) that my writing is becoming more like a personal diary rather than my mother's progression into this despicable disease called Alzheimer's.  She is spiralling out of control and every day we are preparing for the crash landing of the day.  My brother has posted some videos on youtube and I am adding them here in order from February the 22nd, March 9th ish, and March 23.  You can see the quick progression of the disease in just one month.  Notice that in the early part of march we increased her risperdone to 1ml a day and the effects are amazing in her behaviors but not so great in every other area.  I now have to lift her into a car, lift her into and out of the bath, we have to hand feed her, and she can barely take her pills.  She takes an hour to figure out what her nightly schedule is and what movie to what.  So this blog is brief, just take time to view his videos and I will add mine next time.  The most amazing part of all this is while her behaviors, fine motor, gross motor, expressive language, and self help skills are regressing from a two year old to an 18 month old, her receptive language, comprehension and memory is still function well.  She is able to understand virtually most everything that is going on in her life.  She even told me how fast it was slipping away that she no longer can get in the car and that she feels herself dying.  She says her body is not working right anymore and she feels death. Another amazing thing is that her love for Our Lord and Savior is still strong.  She begged me to take her to church this weekend and we went.  She started her praise tapes again and the last video is her and the praises!!! God is so powerful and so marvelous and she has found peace once again.

Mom wanted to prank the internet, but she couldn't form the the words. "Stuff with it" = the internet. etc etc... Wish we could have pulled this off but she's fading too fast :( She was worried that I would get in trouble if I pretended to be evil. (hence the lawyer etc)... either way, it's too bad she faded.... she has always been a prankster and she would have loved to pull this off. (oh and the "Dying" is her thinking that Johnny from The Dead Zone was sort of real and the "Guy in Congress" is from the TV show too.
Or this might be part two really, I'm not sure. Either way, Main reason I posted this is because this is one of the last times I saw my mom able to eat properly. I will post one soon of her eating skills nowadays...she cannot figure out how to eat anymore
 Kim speaking: mymother was supposed to be laughing.  In the movie sense and sensibility, one of the woman always laughs when her husband is curt to her. So instead of mom getting upset with Dad when he is short, she was supposed to laugh.  Instead this is the sound she made.  For two weeks my Dad had no idea what she was doing...The funniest part is now my daughter goes around doing it alllllll the time.
My sister totally made her hair look retarded the night before, and my mom was laughing about it the whole next day. I'm glad I caught it on video, KUDOS SIS :) and as my mom states, my sister isn't usually the "goofy" one, so it was even more perfect..

This is my hair now after an amazing hair cut
My side note: Here is the picture I took-it was hideous and quite embarrassing.

early March explain to her how in the T.V. show "The Dead Zone" the character Johnny does this weird shaky hand thing before he makes "Spooky Eyes" and sees his vision .

Now Walking the Dog
This is my mom having a bad moment. After about 3 minutes of her just staring off into nothing, I booted up the camera. Notice the difference a month makes...This is literally after about 3-4 minutes of her doing the same thing and continued for about 5 min after I stopped taping. All because my dad came home to take a nap, it totally threw her off. (Long story...and poor Dad, can't come home to take a nap..)

Saturday, March 5

Surrounded by fabric

I thought that once I finished my masters, I would have sooooooo much time to relax and just enjoy my family.  Yet, it seems that I must find projects to keep me up at all hours of the day.  Our non profit keeps us running all day and sometimes all night, but I am so grateful to be a servant to my Lord.  I find my life so filled with purpose that I cannot praise Him for the craziness He sends our way.  I actually found that God has a very funny sense of humor.  As I reflect on the tasks that He has given me in the past few weeks, I chuckle.  For my friends and those who know me, you will understand the irony.  I was not a pregnant loving person.  While pregnant with both of my children, I was ready to be done with the whole hormone craziness within the first month.  I endured and have two amazing children-please do not get me wrong-I love being a mother with my entire being, it is the 9 months leading up to it that I could not stand.  I also do not enjoy drama and tend to remain quite stoic during it.  SO here I am leading a mentoring group for not only pregnant woman, but teens on top of that.  I love my teens and am grateful for the experience in working with them, but I would never have started anything like that on my own. God literally brought them to our door steps and is doing some amazing things.  I am proud of each one of them for their unique talents and perseverance.  This week one of them returned to school after 6 weeks of maternity leave and another one passed her pre ged.  We have around 9 girls and are starting to grow in the community.  We have mentors wanting to get involved and maybe joining ranks with the local YFC.  Our goal is to present Christ and God first, educate the girls and keep them in school second, and help them with their child third.  We provide resources to help them become independent of Medicaid, foodstamps, and other helpful support.  We also will not waste our time, resources, and energy on anyone that is not helping themselves. 
The second situation in which proves our God has such a silly side to him is that I am a neat person.  I am a minimalist and do not like clutter. My closets are organized and I get rid of items as quickly as they come in.  Now I am up to my neck in a project with a family whose mother was a hoarder.  They have brought many items (an entire house full of boxes and fabric) that we have spent the entire week opening and sorting. I felt so blessed this week as so many people came out to help.  My brother's friend Elizabeth flew in and spent some of her vacation unloading items and setting up tables.  I found her gesture so thoughtful and helpful.  I also had a dear friend Yvi spend so much time with me setting up.  Edwin (one of our teens that we work with), Dawn (a volunteer), and Jon ( a friend) spent today helping me from 8:30 until 5.  I cannot believe how devoted they all were! On top of it, my brother who does not have enough on his plate is coming to help this weekend.  How blessed I am. After this project (yard sale is next weekend), we have a new hoarding project which I just got a call on.  This one will require going into the house and helping the people get rid of stuff so that there is more than just a path. 

Today with my mother was rough.  She is increasingly going down hill.  It seems that the Alz is speeding up.  She is still there-still understanding that she does not understand.  Still crying most of the night because she cannot do anything.  Wow I cannot imagine not knowing how to sip from a straw.  I noticed a lot of other struggles.  She cannot see what is directly in front of her and is completely confused 95 % of the time.  when I got there she was watching deal or no deal and was following exactly what was happening.  She realized that this was a special episode where two people competed (the first person went and had the final deal amount and the second person went- like the price is right) At the end whoever had the best deal got it all.  She was so excited at the person who won.  Dad went out and mom was still pretty pleasant and smiling.  I talked her into a bath-or actually told her she had to and she complied.  She paced around kept asking what she was doing and would stop and just stand in the middle of the room. I would remind her of what we were doing and she would begin again. I got her undressed which took a while.  She cannot lift up her foot and I basically have to lift it up just so slightly to get her pants off.  We make it to the bathroom and she has to step over the ledge to get into the walk in shower.  She does not like to step down and is shaking as she tries to place her foot down.  She retracts it over 14 times and finally makes the plunge.  She is now facing the wall and asks what she does.  She hunches over and stays like that for about five minutes.  Meanwhile I am telling her and trying to move her to the chair that is in the shower.  She does not understand that she has to sit there.  Finally she gets it and sits down. Unlike most showering episodes, she sits completely still. She does not even attempt to wash herself.  She is just like a helpless baby waiting for me to clean her.  We get done and she has a hard time stepping over the ledge.  She cannot make up her mind on what to put on no matter how many different pants and shirts I bring.  I finally convince her about an outfit and she is in her pjs.  She says she is awful and cannot do anything.  She compares herself to my mother in law and mentions that she wants to help me with my things in my life and she cannot.  She calls herself a failure.  She says "I cannot even do this"-referring to I believe holding a drink.  She becomes hot and starts to cry.  I cool her off.  She gets cold and starts to cry I cover her with a blanket.  Dad comes home and she gets nervous because she is not sure who she is supposed to listen to.  She thinks Dad is going to come in and make her go to bed.  Finally I convince her that that will not happen.  She gets upset that Daisy is with us and not with Dad.  She gets upset that I ate a cough drop.  She does not want to watch the movie until her hot cocoa cools off and she can drink it. We wait fifteen minutes and she starts to drink the hot cocoa. She does not like it and wants me to take it away.  We then start the movie again.  She does not want to watch Under the Tuscan Sun and wants Sweet Home Alabama (which she watches every night now before bed).  We start the movie and she wants Under the Tuscan Sn (it is now 9:45) we start the movie again and it becomes too hot again.  Then she has to use the restroom. Then her body hurts and her socks hurt and her panties hurt and we have to fix each one.  She then remembers that Dad needs to give her money and asks me to go ask him for it.  She yells at me from the room and when I get there she says I took too long and she hates me doing that to her.  We settle in again for the movie and she starts crying again.  This time because she is awful. She gets thirsty and asks me to get her gatorade. Finally we settle into the movie one more time and this lasts until the last thirty minutes.  out of nowhere she begins to cry for no apparent reason.  I distract her. She tells me she does not want to do this anymore because it is too hard and makes her too nervous.  The movie finishes and she does good going to the bathroom, taking her pills, and getting into bed.  I kiss her goodnight and struggle with the feelings I am experiencing.  It was hard to see her using the toilet assistant chair thingy.  It was awful to see her have not ability to do anything.  I had to change her pjs and she could not figure out how to get out of the bed to stand up.  Her body shook as she twisted her legs into a kneeling position on the bed.  I tried to get her to understand that she had to put her feet on the ground.  The worse part is you cannot touch her without making her scream in extreme pain.  I literally cannot put my hand on her hand with this hysterically ear piercing shriek.  I feel that our time with "mom" is coming to an end and that we need to start thinking of how we can get her mind to forget how bad she is.  I can handle her losing the abilities, I do not like that she knows. She says every time now, Kim it is getting worse, i am stuck and cannot do anything.  I am trapped in here.  I cannot talk and no one besides you and Kevin understand me.  I look at her and the pang in my soul is so strong.  I have such a hard time understanding how people can get angry at someone like that.  I can understand getting frustrated but never angry.  She told me just tonight that she is a real person and cannot stand how people treat her. She hates how they assume that she does not understand or know what she wants.  She hates how they stop looking at her or in her eyes and stop spending time with her.  yes there are things that have to change like offering a quiet refuge.  She explained how the noise is so overwhelming and sometimes when someone talks loud or too much, it sets her mind into a frenzy and she gets scared so she freaks.  If the TV is on or someone is talking while she is concentrating, it makes such a fuzzy field around her brain.  Other things that change when interacting is being willing to be patient.  It may take her thirty minutes to get out what she wants to say, but to her, it is not that long and she is so happy when she can say it.  It requires devotion and patience.  What amazes me is how my brother has adapted into this role.  There are very few men that can be a caregiver like he is.  Most men are focused on how the situation affects them-with Kevin, it is all about mom 100% of the time.   We had a shower here last week (a baby shower) with a room full of women.  There was a lady in her late 80's and needed a lot of help.  Out of all the people, there is my brother going up to her asking her if she would like a drink or some food.  He goes to the food and picks out all the items that would be easy for her to chew and brings it to her.  He looks her in the eye, listens attentively, and devoted five minutes to her and only her.  If you had told me two years ago that my brother would have done that I would have laughed at you.  Before, it was all about him and the struggles he had in his life.  He would complain about school or about his situations.  He did not think about others like he does now.  I watch him with my mother and am amazed that he is better than me-me who is a mother to two children and has the innate care giving ability.  Very long post-rambling in the wee hours and just enjoying letting the words flow off my mind without a thought of what I am typing.  Pure relaxation and complete release of the weeks craziness.  Hope I did not bore you!!! Night and Sweet Dreams.  Please keep a dear relative in your prayers as she has been diagnosed with throat cancer and is having a rough time. Also pray for a very dear friend who is on bedrest during her pregnancy!  Thanks so much.

Tuesday, March 1

The forgotten Granddaughter

Yesterday I had such a profound realization and it has stayed with me for the past day.  Not only has this disease robbed me of my mother, but my poor daughter has started to realize the loss of her normaly.  She is surrounded by her friends that have grandparents, uncles, aunts, cousins, and so much family to entertain and love them.  She sees how often her friends go out with other family members or spend time with them.  Kenzie was so sad yesterday when she found out her Nonna would not be comming.  She was so excited and the disappointment in her eyes was so deep.  She accepts not having her Gigi-she understands completely. So much so that the other day I shared a tape of my mother singing.  Kenzie started to cry as she heard Gigi's voice and said how she wished Gigi could do what she used to do. She accepts not playing over Gigi's & Jeeps, but does not understand why she no longer sees Jeep.  She understands that her uncle is so busy taking care of Gigi that lately he cannot play with her.  She realizes that he other uncle is so far away in Cali and her Nonna & Pop are in Mississippi.  She does not however understand why all of her friends have someone and she doesn't. She said to me yesterday when she found out that Nonna was not coming that it made her mad but won't let herself get mad at her Nonna. This puts such heaviness on my heart because I cannot change it.  I cannot make Gigi better so Kenzie can play with her.  I cannot ask Geep or Uncle Tau to take her out or spend more time with her when they are exhausted..  I cannot move to Cali or Mississippi so Kenzie can she her daddy's side of the family.  So we just have to shower her with all the attention and love that we possibly can.  I also realize that this is affecting Connor-he is 2 1/2 and has only been out without Mom and Dad one time.  I am sorry to complain about this but it is bothering me for some reason.  It bothers me when others get to go visit and go travel to see their loved ones.  But for us, our children are on the back burner. Everyone elses needs come before the kids and while I understand it, it pangs me.
Another pang I have is the loss of my brother's life.  He expects so little and does so much.  He is broke almost contiounsly (how can you live on 200 a week).  Granted that he does not have to pay for rent or phone, but imagine trying to pay a $300 power bill each month, cable, water/sewer, groceries, gas and insurance for the car, and any health needs.  He can never go anywhere or spend anything and if one thing goes up, he may not eat that day for lack of money. 
Well today I will be up to my mother's house for movie and bath night.  I am in a happy state though despite the pangs in my heart.  I can help my brother's pang-I am going to buy him a happy and give him some extra money just to let him know that I understand and love how much he is doing for us.  As for my daughter's hurt, only my attention and devotion can hopefully ease the loss of the attention of others.