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Wednesday, December 22

Blessings

I feel truly blessed-we met all the needs for the families that asked for help.  What a great feeling.  So many in the community offered their support or services and we received so many toys, baby items, food, etc.  How I wish I had an endless supply of resources or money.  To give to people knowing that Works in Faith  had the financial resources was fantastic.  Being good stewards for God is such a fantastic way to spend the Christmas holiday-what a wonderful reminder of this season.

Today I had movie night with my mother and it was not a great event.  Mom was so different today-could not work the light switches, did not understand hot/cold, could not figure out anything.  When I washed her hair, she wanted to help and so she started scrubbing the water and my leg.  She could not even wipe her eyes with the face cloth.  She was so discouraged with how little she can do and hates the burden she has placed on us.  I try to remind her that this is  a gift for us to give back to her as she gave for us her whole life. 
Truly, the biggest burden falls on my brother.  I do not feel bad for me, I have a great husband as a support, two delightful children and the ability to go out and find a job.  I do feel bad for my father because he has lost the woman he married.  But he had the family, the love of another, the ability to go where he wanted to work.  He shared his life with us and had her to do it with.  I know so many that are in their 60's and taking care of their loved one because of cancer,back injuries, mental issues, heart problems.  But it is my brother that I feel the worst for.  Here he is 36, single with no one to share his day with, no one to offer support, a hug, a loving kiss, or even an escape from the monotony of each day.  He works each day with a mother that runs around naked, he has to wipe her bottom, he has to change her when she pees her pants, and manage her as she freaks out.  He does this without ever complaining-rarely do I hear about the chaos that he dealt with during the day-I usually hear about it from my mother.  So now he has graduated and is able to go and get a real job-one that will actually pay his bills, allow for saving, and possibly buy something that he may want.  In the last few years that he has gone to school, he has had to live on barely nothing, buying nothing except for the occasional computer piece or game, living on the grace of others.  And now, he is still there.  He works for less then $10 an hour to care for his mother and has barely enough money to buy much needed shoes or clothing.  Yes he has been blessed with a new car and a house to live in.  If we hired someone to take care of my mother it would cost us around 1000 or more a month.  He does it for 800.  I plead with him to go and find work, to leave sebring and let Dad and I take care of mom.  I want him to find a girlfriend and have a future life.  By working with my mother, he is sacrificing his chances of love and a family.  He is sacrificing the ability to make some decent money.  I try to tell him that Dad is in the position to take care of mom more.  He can be the primary caregiver and use us as a reprieve a few times at night or on the weekends.  After all, I know my father would jump at the chance to be a devoted husband and care full time for his wife.  He did this so that my brother could earn some money while in school.  But now, things are different, and while it would be difficult for us at first, Mom would eventually adjust.  It is just not fair to continue to have no life, no money, no anything just for my mother.  It breaks my heart in two.  Did you know that my grandmother gave him graduation money.  Guess how he spent it...Taking my mother out for food and buying her dog treats at the store.  Now for Christmas, the only gift he wants is a Wii, something to play with with my daughter or to help him escape the burden of caring for my mother.  It is my quest to find one that I can afford or trade off services to help him get.  Another blog that is not about my mother but if you knew the pain I feel towards my brother and how I wish I could help him, you would understand.  While it is my father's wife, he had a life once.  He can escape and has the resources to go out and eat or buy a new gadget.  He can escape into work or visiting his mother or brother.  He has the support of wonderful people at Alzheimer's Spouse.  My brother is stuck. He cannot escape-his job is my mother.  He cannot escape, he has no one outside of me and my dad to talk with.  He cannot escape, he has no resources so if he had a date, he could not even take her out properly...Kevin I hate this mostly for you because you are losing  a life that you should have had.  I feel honored to have you as my brother and am continuously amazed at what you do!!!!

Wednesday, December 15

Wow

Today we were posted in the newspaper and I am at a loss to describe the craziness that ensued.  I am amazed with Liz who contacted the papers on our behalf.  The newspaper jumped on in monday morning and had the story posted online by monday night.  I woke up today and saw our picture on the front page.  I must say I am very appreciative and even more nervous. I actually hunkered down and hid out of sight today.  Luckily, I had excuses such as our first meeting for our teens with tots.  The outpouring of support is amazing-our vet gave us a credit, one church gave us gift cards for food, another called to send a donation, toilets and tools, toys and clothing all donated.  Furniture to the teens from the pastor at Grace Bible.  Dr. Summer Khan's support in helping our teen mothers and the items donated.  So many are stepping forward.  My dad did work for two people today and gave them the article to donate to. Another contacted the paper to do a public interest story of how we impacted their life.  I see so many paying it forward that my heart beams.  I was unprepared for this and hate the late hours it involves.  Selfishly I was so looking forward to having a break after two years with my masters.  Hopefully in the next few days, the pressure and amount of work with taper off and I will get to bed before the wee hours of the morning.  I am trying to do this gracefully, but really, I hate the limelight. I am having such a difficult time with the words of praise.  I am a mere instrument of God's and it is He who deserves the praise.  My stomach constantly turns and I have to remind myself that this is where God wants me right now.
I must apology for the direction my blog has taken.  I realize what started out as a journey through Alzheimer's has become much more like my diary. As I went to my mother's tonight, I talked with her about helping me with the blog, sharing what it feels like what she thinks, and how things seem through her jagged eyes.  She was very interested in doing it and hopes that her words might give caregivers some insight into taking care of someone with Alzheimer's.  Her first tidbit of advice was don't make changes quickly and give a routine.  In a world where nothing makes sense and everything is pretty scary, knowing what happens because it is the same each day gives them some order and some clarity.  As she said "it makes things less scary and confusing.  I guess when you have to expel so much energy just trying to make sense of this new world, the last thing you want is the unexpected.  I was impressed at this insight and amazed at how clear she can be with reasoning and thoughts.  She was rather nervous tonight and I find it so hard not to get irritated when she has me get up and down to stop and start the movie so she can tell me something about beck and his compound. I hate how many times i must turn on and off the air/heat and now we have a space heater to turn on and off as well.  Maybe because I am tired, but I wish just once she could stop the overflow of information that she starts spewing out as soon as the movie begins.  I promise the entire time I am there she is calm and quiet.  As soon as I hit the play button, she wants me to count her money, go ask dad about her money, check the locks, ask me about her teeth, ask about her chest and any new lumps, try to figure out what new tv series to play with Kevin.  Each of these thoughts take about 5 to 7 minutes to get out into coherent messages and the entire time, I cannot stop thinking about the movie.  Why is it that I know I will not watch the movie fluidly, nor do I actually care to watch the movie.  For some reason, once it starts going, I hate to have it stopped.  Strange Strange Strange.  So after everything, mom finally enjoyed the last five minutes of the movie :)Ok really late just looked at the clock so off I go-Good nite everyone and once again thanks for the support.  Here is a link to the article if you feel so inclined to read it .

http://www2.highlandstoday.com/content/2010/dec/13/works-in-faith/news/

Saturday, December 11

Tis the season

December 11, 2010 Photo Shoot with my mother

 
Did you miss me?  I know, preparing all that food should have freed up so much of my time and it did.  I was able to complete my schooling and I am proud to say that I am finished.  Completely and utterly finished!!! I also am proud to say that I have graduated Summa Cum Laude as of Friday.  I am so pleased with that title and know that I should not be so boastful.  I just never thought I could make straight A's.  Never once in my life did I accomplish that until now!  I guess I just was not busy enough when I was younger.  Anyway, now I can start looking for a part time job or something that can bring in some money since Jason and I stink at fundraising for Works in Faith.  The best part is we are able to live off so little that we can give the majority of our income back to the people of this community.  Like right now, we have six families that will do nothing for Christmas.  I am going to try and raise $500.00 dollars to help buy some toys and Christmas food for these families.  I am going to tug on heart strings right now and use my blog to motivate some of my readers to go to our website and donate anything they can.  Help me raise the money to give these people a good holiday.  You can even specify what family you want to help.  Family 1: single mother with one daughter that has been robbed twice in the last three months.  She has no money to even buy her prescriptions after paying all her bills.  She was a nurse but due to an accident, her doctor will not release her to go back to work.  Instead of collecting Social Security, she is enrolled in school to obtain a degree in some other field to help her go to work.  Her daughter has had some horrific things happen to her and are too personal to mention.  The house has a roof that is leaking and we cannot fix it because we do not have the resources to pay for the materials.  Family 2:  This is a family of four that often has six, seven, or eight in their home.  They are a foster family that bring all sorts of children into their home.  They recently had three little ones come into their home to celebrate the Christmas holiday and were unexpected. With the new additions, there will now be 7 children present.  With a limited budget, they already have purchased the presents for the previous four that are in the house.  These are children that have been uprooted from their home due to neglect, abuse, or both.
Family 3:  This is a mother of three children that moved here unexpectedly.  She found work within a week of moving, but due to the holiday season, was quickly unemployed again.  She is looking for work and has secured another job but will not have enough to get the children anything for Christmas.  Family 4:  This is a mother and father of a two year old.  The father recently got laid off from work because the contractor did not have work for him to do.  He is looking for a job and has yet to find one (In our county, it is very very difficult to find work right now unless you know someone as I am finding out).  Those are our top four, I will blog about the rest next week.  Please if you can give anything, I can guarantee 100% of all donations will go to the families. As it is, I am using the $200 I would get for my paycheck for the last two months to go to some of the families food needs.  Rather than buy the things I would like to get my children, I have gone to yard sales to buy their gifts and will do the same for these families.  I will stretch your money to help these families.  Consider mailing in the donation because then paypal does not get a %.  While sometimes I hate that I cannot do as I want to for my children, they are never without.  Even more amazing, is that compassion and desire my daughter has to give to others.  She goes through her clothes and toys and gives without reservation. http://www.worksinfaith.org/

Back to this photo shoot:  Things with my mother has been bizarre to say the least.  Last week she was a mess.  She now sits on the toilet with her pants on and shakes all the time.  She no longer has the strength to get out of the tub and I have to pick her up.  She could barely talk and would jerk her arms and legs.  Movie night was frustrating because she did not watch the movie at all but rather asked me to stop it so she could tell me something only to forget.  Then all of a sudden, the jerking, shaking, and nontalking stopped and she is the lady in the pictures above. Still unable to do much, still peeing on the toilet through her clothing, still losing her train of thought, but happy oh so happy.  And loving.  I do not think in all my years of my life my mother was as sweet and as kind as she is these last few days.  

Whatever it is, I want this to stay.  I find myself wanting to go and be with her even when i am not required.  I actually miss her and enjoy the time with her so much.  I know that my brother and father feel the same because I watch them.  My brother goes up there when he does not have to , my dad comes home early to be with her.  And I must say, I think it is because we are all in shock.  This woman is probably the best mother I have ever had even though she cannot do anything.  She can talk and boy she uses those words to encourage and uplift saying how much she loves us, how happy she is to have us, how blessed she is for all the help. She praises and gushes over us.  How can you not like that...The one thing about all this that I do not understand is her ability to grasp it all.  I wonder how many of you that have had a loved one with Alzheimer's had someone like this.  She can tell you exactly what it feels like to have Alzheimer's.  How she sits on the toilet and knows she will pee her pants and
does not want it to happen but cannot figure out what to do to stop it.  How her body is rejecting her thoughts and she cannot control her own emotions or movements.  How she hears and sees people

and has to kick them out because they are not real.  Although she admits that one or two of them she lets stay because they comfort her sometimes even though she knows they are not really there.  She will talk about everything going on and is aware of our president, our current affairs.  She cannot raise her arm on command nor brush her hair.  She cannot dress herself at all and cannot drink from a cup without a straw.  She can no longer read, write, or tell time.  How then is she able to do all this other stuff.  It seems as though her process memory is shot but not her other memories.  She is aware of how people feel about her and that is the part that bothers her the most.  Well almost the most-really what bothers 
 her the most is the way she looks.  She was soooooo vain growing up and still is.  Yesterday the reason we had the photo shoot is because I was able to do her makeup.  Yes, I know that is unbelievable-Kimberly actually put makeup on someone and it turned out nice.  I am finally learning how to be a woman-I can cut her hair, style her hair, and apply make-up.  I still cannot do it to myself but eventually in time I may.  Fortunately for me, my hubby hates me with my hair done and make up on. 
  Back to her friends.  This woman was such an amazing friend to everyone.  She took care of everyone and helped strangers.  It bothers me that now, there are literally four people that care enough to still be with her.  One is her very best friend that has been with her through thick and thin for over 25 years.  The rest.....all elderly ladies up to 90 years in age that show her more love and compassion than anyone else. 
One took her out to a restaurant yesterday.  My mother was so happy that someone other than my brother, father, or me took interest in her.  Then she got home and the 80 year old invited her over to visit.  Finally, the 90 year old woman came by just to chat with my mother.  Can anyone tell me why no other family or friends talk with her or take her out?  Why do they avoid her-because they cannot understand or accept???? Ah well...Keep Jason and I in your prayers as we are in transition looking for work.  We are also in the process of getting long term disability and insurance so I can get my testing done finally.  I have to know if I have the gene or not!!!!Now that finals are done and school is complete, I hope to blog more often!!! Please remember to donate if you can.  Christmas is about giving and often we forget about those that are not in our immediate lives.  Sometimes we grab an angel off a tree or give some money to the man ringing a bell, but we never know if we are helping someone or enabling someone.  I promise that all those we help are not being enabled.  They must  be helping themselves and contributing to bettering their lives, not just leaching off of others.  Thank you so much for everything.  Oh and for those of you that have sent the furniture for the dollhouse-I cannot thank you enough.  I will post some pictures of my daughter's face when she opens them up.  I did not mention you by name because I am unsure if you want to be public but your gift of kindness has not gone unnoticed.  I am so grateful for it!!!

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