Saturday, August 28

First day of School

One thing that this disease has taught me is the necessity for change.  My family constantly reinvents the wheel.  As one thing alters, we must adapt and remain completely flexible.  With Kevin working 5 days a week with mom, Dad and I notice great difference in the daily activities.  we are able to accomplish so much because she is not on the phone with us or finding things to get upset about.  Amazingly, she has been rather calm since he has been with her -only a few episodes of freaking out.  Being off all medicines has actually been therapeutic for her and helpful to us.  We can truly assess the problems that Alzheimer's is causing in her life.  The greatest change in my mother is her short term memory. She definitely is starting to forget conversations or tidbits of information.  She has greater difficulty recalling words or replacing words for other ones.  She also is getting a bit more delusional.  For instance, she believes that when she uses the restroom, it is her feet's fault that she sometimes misses and gets it on the floor.  It actually is quite a funny thing.  She now believes that she must stripe down completely before she goes to the bathroom.  Then the entire floor must be clear of anything, towel, socks, her slippers, her clothing, hair or whatever else might have gathered.  She plops down on the toilet and proceeds to lift her feet up off the ground.  In her words, "I lift them since it starts there and when I lift it, they start to go, Sometimes they do not help me and won't let me pee.  Sometimes, it is their fault, they pee on the floor and get me wet" I ask her who they are for clarification and she says her feet.  Her feet control her peeing.  I suppress a smile as she gets up, gets dressed, and five minutes later, starts the process over again because "they" forgot a little.

This week has been a bit easier as well since my little one has started VPK.  I have four hours to play with my son, run some errands, train my son in behaving outside of the house, do some school work, apply for grants for our non-profit, visit with clients, visit grandma  or my mother, and basically take some time to relax with only one child.  The weird part is that I thought I would enjoy the time without my little girl-not so much noise.  But I find it horribly quiet and I long for 12:30 to come so I can bring her home.  She is learning so much already and mking sure to teach it to me. 

The other night I was over there and my mom wanted some oreos.  She wanted to do what the kids do.  It took me a few minutes to figure out she wanted to dip her cookie in milk.  I get some milk and she asks me what now.  I tell her to dip the cookie. She looks at me confused and I demonstrate.  She takes her cookie and throws it into the cup and then looks at it and asks me what to do.  I tell her to reach in and get the cookie.  I cannot describe the scene to you but trust me it was quite humorous watching her try to get the cookie out of the cup.  I reach in and put it up to her mouth.  Since it was soft, it fell apart and really confused her. 

She went to her doctor this week and he gave her a pill to increase her appetite.  The weird thing is that it is for breast cancer as well.  I have felt more lumps in my mother's breast and cannot help but wonder if he thinks it has come back.  My mother has decided to have the MRI that her obgyn has suggested that she have after the results of her last test showed something.  The question is do I tell her the results of the MRI no matter what??? Hmmm decisions decisions. 

One thing that this disease has really altered for me is my relationship with others.  I have watched so many of my mother's dear friends disappear one by one until she only has one left. These were her childhood friends, family members, and best friends that spent many years in our lives.  My mother was there for them when no one else was, she was a great friend and a wonderful support person.  I see how these "friends" have turned their back on her and have left her alone.  This once friendly, extremely outgoing person has no one to take her out or spend time with her.  It has made me evaluate my friends and look at my relationships.  I realize that a friendship is not necessarily about spending time or building relationships.  It is about being there for one another through thick and thin.  To shoulder the burden with and help ease the pain.  With all that is happening, I have weeded out those people in my life that are not a support to me.

  Life is so fleeting and so difficult sometimes that I want to spend my energy and love on those that I can trust and rely on. Those where I do not have to guess or deal with games.  I must say that of all the things that this disease has done, the biggest thing is the change it has made in me.  The veil has lifted from my eyes and I have realized much more about people than ever before.  I am much more outspoken and unwilling to be taken advantage of.  I realized for the first time ever, that so many have used me as a mat and that is not what God has intended us to be used for.  Yes, I believe that He wants us to serve others and help others as Jesus did for us.  I do not think, however, He desires us to be in situations that are not edifying to Him or giving Him the glory. I am thankful that God is in my life and I can count on Him or lean on Him.  I also am grateful to Him for all that He has given to me.  He constantly blesses us and I walk with the light of Jesus in my life.  The greatest blessing He has given to me is the closeness of my family.  Although this disease is cruel, it has created a bond between my brother, father, and uncle/aunt, that would never have been possible.  We work as a team and it is refreshing to have them near.  I fear the day when my brother leaves us.  I know that it will happen as he finds a career upon his graduation in December or when he finds that special girl.  I will miss him  terribly though.  Anyway, I have rambled enough tonight.  Night!!

Saturday, August 21

Not a stitch of clothing

It has been a busy week with the kids and getting Mackenzie ready for school next week.  I am excited for her, but really do not want her to go.  I think I will enjoy the alone time with Connor and she will enjoy not napping but spending time with me while Connor naps.  Both kids will have a win win situation while I slowly tire by evening.  I have finally sent out over twenty grant proposals and have received one denial due to the fact that they do not accept unsolicited proposals.  I will be sending out another twenty in the next two weeks.  Keep us in your prayers for the funding to go through . 

Since I was off from school, I have been avoiding the computer and not remarking as much in my blog.  Things are no less crazy but much easier to manage since poor Kevin is devoted to mom.  With his 25 to 30 hours at moms. I find myself with more time-less phone calls and visits.  I cook more often than I used to for her since she will eat what I cook but little of anything else unless it is junk food or Boston market chicken (which she thinks Kevin cooks) hahahaaha. 

I came up to her house at 7 and she was rather confused at why I was so early.  She and my father were watching another charmed episode so I decided to go to walmart and get some supplies for Kenzie's first day of school.  By the time I finished, I was able to make it back without her getting antsy.  She was very confused and nervous for most of the evening.  She stripped down to bathe but then refused when she saw a very little spot of rust on the inside bottom of the chair.  She started to cry and got into her bed.  She told me to leave and then refused to talk.  I told her I had to wait until the rain left before I could go.  I put a white mat on the floor in her shower and that was all it took for her to readjust and start again.  I noticed that her short term memory is failing her greater than previously.  We are at the stage where we can distract her when she is agitated and calm her that way.  She could not step over into the shower today and did not understand why I was washing her.  The shower took the longest yet and by the time it was over, I was thoroughly drenched.  With water soaked clothes, I bathed her (still getting used to the removable handle-you would not believe how many times I released the handle to help mom and ended up with the shower dowsing me with water) thankfully, mom does not like a cold house and with the temperature at 79, I actually felt refreshed rather than cold.  I needed to cool down-not used to her keeping her house so hot)
After her bath, she had a hard time getting out.  She could not move for a while.  I assisted her out of the shower and into her bedroom  It took us fifteen minutes to get her dainties and pj pants on her.  As we were putting on her socks, she had to use the restroom.  She had very loose stools (going on three days of diarrhea . She told me that her new way of using the bathroom is to take everything off.  This way "they" won't make a mess.  In the past week,  "they" have peed on the floor in front of the toilet and make her get her clothes and feet wet.  Then she has to clean  it up.  but if she strips down and lifts "them" up, she won't get her feet wet.  I finally realize that 'they" are her feet.  She also tells me that she has continuously asked "them" to stop giving her diarrhea but "they" do not listen.  She stays naked the entire time and it takes about an hour before she is finished using the bathroom.  She decides to put on dainties and a tank top. 

We are ready to watch the movie "The cutting edge" and she stripes her shirt off because she is now too hot.  The movie went well and she actually chuckled throughout it.  By the end, I noticed a change in my mother.  She had returned for the rest of the night.  Not an Alzheimer's woman, not a scared and confused woman, but my mother-the woman I have not seen since I was pregnant with my daughter.  I actually talked with her about life, about my son and my friends.  She was so sad that she the woman that had a thousand friends has one.  I opened up to her about my friends and how few I have now.  It seems that true friends are hard to come by.  Those that support you and stick by you no matter what.  Those that are a comfort to you when you are in need, that can give as well as take. We talked and laughed and shared some great moments.  I cannot thank God enough for the gift of my mother.  I needed it so much.  I just wanted to have a chance to talk to her like old times.  It was so special and a night I will remember for ever!!!!

Friday, August 13

Movie night reinstated

Well I got to contribute after all.  Upon hearing the news that my son will need to have a colonoscopy and upper gi, my mother called me.  Just like that all the tears and screams and insults are forgotten and that chapter closed.  And just like that, movie night is on again.  I am grateful that my dad gets a little reprieve, slightly sad that I had less than an hour to get myself ready to go up there. 

Mom was completely out of it when I got there.  We did manage to redo her bathroom and make her showers a lot easier.  It was depressing to see the set up and realize that she now needs aids to complete almost anything.  Dad took down the glass doors (which is good because I can see them getting broken in the near future) and he installed a shower head with a handle.  We also put in the  "chair".  You know that ugly chair with handles and a seat with no bottom (a chair that also goes over the toilet).  She got in and sat down while I bathed her.  The nice thing is that the showerhead has two heads one that keeps water on her and the handle that I can control.  It kept her from getting chilled and allowed me to clean her.  It was so much easier than the past few times. 

I also believe I may have fixed her air.  By shear luck, I moved the vents away and down and now she is loving it.  We shall see in the morning just how it went.  I realized as I walked into my house that I forgot to put the seat back in the shower.  She has not tried it out on the toilet yet  and I am terrified of the late night trip to the bathroom.  The problem is my father is now asleep and considering what he has been through, I hate to call to wake him up and possibly create a problem where there may not be one.  She is in such a great mood that if he unexpectedly wakes up, it will confuse her.  So I take the chance that she will be able to sit down (we did practice rounds so hopefully...I keep my fingers and toes crossed).  I am hoping she is so exhausted that she may crash early tonight.   
My grandmother is in the hospital so please keep her in your prayers.  Also keep my dad in your prayers as he has to manage things.  I want to say thank you to my brother for running up there yet again and helping out so much.  I also want to say thank you to my uncle and aunt-they take such good care of my grandmother and are such a blessing to my father.  My dad and I went roller blading the other day (pictures to be posted) and my father commented on how blessed he is to have my uncle here and how nice it is to know that there is someone that is always willing to help and never once complains when asked to do something.  I thought back to all the years I have known my aunt and uncle and I realized that I cannot think of one time when they complained or moaned about anything.  That is a rare thing-especially considering how much they do for others and never even make it seem like they do anything at all.  A true act of compassion-never taking credit for all they do, but brush it aside.  I notice and I thank them from the bottom of my heart!

movie night canceled

The past few days has been rather difficult and I cannot really describe what has happened. My mom has been crazy since she has taken herself off of risperdole.  The only positive thing in all this is that she can speak better and has some emotions.  The negative thing is that most of her emotions are horrible.  We thought that she was losing her abilities based on the medicine, but we are realizing that is not the case.  It just seemed so because she could not communicate well. 
After yesterdays fiasco, I realize that I cannot even help with my mother like I used to.  I want to relieve some stress from my dad and I cannot.  It makes me feel useless sometimes.  Yesterday, I ran up there because she was on the phone screaming and crying without any words.  I tried to call her back and so did my brother but we could not get through.  Finally, she called again hysterical and still not talking.  I get to her house and leave the children in the van as I run in the house to see what is happening.  She is standing with her mouth open just screaming ahhhhhhhhhhhhhhhhhhhhhhhhhhh.  The T.V. is on and fuzzy-it was on channel 2 instead of 3 so the picture was not clear.  Every ten seconds a loud brrrrrrrrrrrrrr sound would come across the T.V.  I put the T.V. right and she starts yelling about being left alone all the time.  Now my brother left at four and my dad would be home at 6.  In this time, she completely lost it because the T.V. messed up.  She did not know how to turn it off or turn it down.  She fixated on it the entire time it was messed up.  I try to explain to her that she has to calm down so I can bring the children in or I will have to leave because I cannot leave the children in the car alone.  She freaks out and tells me to go.  She walks out of the house and starts heading down the street.  I follow her with the van but she will not.  So I follow her trying to reason with her.  I get her to head back to the house and she was calmed down enough to bring the children in.  As soon as my father got home, she started all over again and I had to go with the children.  I realized that the days of letting the children play or be with Gigi are over.  Whenever I  visit or help with the children there, it always causes some sort of difficulties.  I cannot predict how Mackenzie will react or what she will say or do that may upset Gigi or what Gigi may say or do in front of the children.  My mom is no longer able to control herself enough to be with the children.  That makes me very sad to realize this. 
Last night Mom was rather upset with me that she cried all night long because of me telling her about the kids in the car and not staying with her.  She called me at one to yell at me and cuss me out.  She woke dad up after and kept him up for quite awhile yelling about me.  She never went to bed-this makes two nights with no sleep.  Today, she has been awful just crying, screaming, and completely out of her head.  The disease has taken another step downward.  She cannot manage the locks on the doors, she drops things constantly, she cannot sit right on the toilet and must have a toilet seat modification.  Her sensitivity is insane-she feels the slightest pain-her nails bug her and she tries to cut them completely off, her eyelashes cause her difficulty, her clothing hurt her, etc.  She cannot wipe herself or do any personal care (deodorant, brushing teeth, brushing hair, getting dressed).  She no longer can figure out dvd's volume control or any buttons on her remotes.  She cannot stand the air on or off and is completely obsessed with it.  She has no more pride or even vanity left which is the biggest change ever.  For my mom to walk around the neighbor hood with slippers, no teeth, and pajama's is so bizarre. Following one step directions is not possible anymore and she has difficulty comprehending what I am saying to her.  She is able to retain her ability to communicate and her perceived reality.
Well,  Kevin has headed up  there after his internship to help dad get a break.  I feel so bad for Kevin-it was his day off sortof.  I wish I could still help and am thinking I may have to hire a babysitter once a week so I can help them out.  I do not like seeing them having to do it all and I wish I could share the burden.  I realize that it is not the disease that bothers me as much as feeling that I cannot help enough.  My children and family come first but it is hard to watch the responsibility fall to my father and brother.  Keep them in your prayers!!!

Thursday, August 5

being off meds

It has been a busy week full of appointments with doctors, visits with clients, children of all ages crossing my threshold, birthdays, and non stop action.  Some of the neighborhood teens have taken refuge to visiting me and spending time with the children.  We threw two birthday parties for some of them and had a remarkable time witnessing and listening.  My brother has continued to impress me in ways that I cannot explain.  If my mother was herself, she would be beaming with pride at the heart he has.  Without complaint, my brother has been at my mother's house Sunday, Monday, Tuesday, Thursday and I am sure will visit her this weekend.  She enjoys the company and he make her laugh.  Not only that, but when he is there, my dad is able to get work done and I am able to run around or just play with my children!!!! Thank you Kevin from the bottom of my heart.  I am amazed at the growth and changes in all of our personalities since Alzheimer's as entered our lives.  Despite all the heart ache and misery that the disease brings, I must admit that I have a relationship with my brother and my father that many may envy.  What other person can say that they talk to their family on an average of five times a day or sees their brother daily with coffee and shared stories.  I know that both my father and brother are along side me on this journey and there is no greater feeling.  My dad and I are starting to roller blade together next week and I am overjoyed.  I get two nights with mom, a day with dad, and time with Kevin.  I would think all this family bonding would get annoying and unpleasant but it has the  opposite effect.   I find myself longing to talk to all of them throughout the day.

My mother is forgetting more and more now.  She asked me to visit her on Wednesday and do movie night.  On Wednesday, she got very confused about why I was coming.  She does not remember phone conversations that we had five minutes ago and she is having difficulty comprehending what I am saying.  Her newest obsession is with the air.  She is hot until the air kicks on then she is freezing cold.  She does not like it blowing out of the ceiling and wants to block them all up.  When the air turns off, she gets hot and hates the Florida weather.  We have all tried to explain it to her, but to no avail.  At least she has forgotten about her teeth hurting, her personality changes, her neuropathy, and her hatred of the washing machine.  The uncomfortable bed of the past is completed surrendered and is now a thing of wonderful rest.  She hates all her clothing and has me sew them up as she cuts them to make them fit better.  She does not like them around her neck and wants all her night gowns to hang past her chest.  She wears dainties that are extra large even though she weighs 94 pounds. 
Since being off her meds, she is much more cranky and aggressive, moistly to my father.  He is definitely the Antichrist all over again or in her favorite saying of the week "that F****ing bast***.  Such desirable words that any man would love to hear first thing in the morning and the last thing at night.  She was quite angry with him for the first half of the week, but forgot about it by Wednesday. 

I cooked mom chicken with Spanish rice and she gobbled it up (new recipe to remember for her).  Tonight I visited with just Connor-Kenzie was playing with uncle tau (Kevin) and I had some one on one time with Connor.  We went up to my mothers and brought dinner-olive garden crouton encrusted chicken stuffed with spinach, Romano, and mushrooms served over rice with steamed broccoli.  She liked it!! Recipe number two to remember.  Tomorrow I am making a beef roast and hopefully she will eat some.  I am sure her body is craving some red meat.  After visiting, my son and I went to the YMCA to get some exercise.  I am so grateful for the scholarship to the YMCA and love the fact that they will watch my son while I work out.  Boot camp starts again next week as well as kick boxing so I will be pretty sore but happy and relaxed.  Tomorrow is movie night and I plan to go up in the morning with the children and return tomorrow night.  Please check out the new web design for our nonprofit and let me know what you think.  We also have a blog if anyone cares to follow it.  There are links to it on our site and you can keep updated on what we do.  
Tip from my husband:  As I am writing this, he starts to chuckle and says I just realized something you can do with the mouse.  I look over and he is moving it up over people's faces.  He says-you can pick people's noses with it.  I look at him with disbelief-my serious, devoted, did I mention Serious husband continues to say you should try it it will make you laugh.  You know as juvenile as it sounds I say to you-try it, it really does make you chuckle.