Wednesday, February 23

Flip the switch

A few videos to include in this:  From Friday night watching Bride and prejudice

What a strange day today has been.Started with the Drs for the children and got an all clear.  The nurse mentioned something about traces of blood in Kenzie's urine from the weekend but did not mention anything more.  This weekend we took Kenzie in again because although her fever broke Friday, on Saturday, she did her weird zoning out thing that has not happened for two years.  She slept until 9 which is a rarity and from then until 11, she did not move.  No fidgeting, no walking, nothing.  She would not answer us at all for fifteen minutes, just looked completely pale and dazed.  Then she would start talking but very distracted.  As I drove her to the doctors, her lips went completely white and she started to gag.  Once in the Dr's office, she still did not walk or talk much.  Then, I kid you not, all of a sudden the color came back and she came to life.  Literally in five seconds, she was right back to herself.  this reminded me of her pet it mal seizures.  At first I thought dehydration but it was more than that-so strange and like the color went away from her like it did when she was two.  Well her urine showed ketones in it but in a slight amount.  So she was slightly dehydrated but not dehydrated enough to need iv fluids which makes me wonder what the episode was.  Watching her closely.  Now I am wondering why she had blood in her urine without having a uti.  Seriously, my children have such weird things that are unexplained and I have no answers.
Anyway, the all clear was today so that was good.  We also had an unexpected phone call at noontime.  My dear sweet Gloria called me.  I was so excited and so relieved to hear her wonderful voice.  She then asked me to meet her at her house because she was going there in just a few minutes.  Of course we loaded up as quickly as possible (after Kenzie ran around the house grabbing things to give to her).I was able to visit with her for awhile and it was so refreshing.  I am so happy to know that I can talk to her at least once a week and as things settle down, she will be allowed to visit with us and spend time with us.  She asked us to take her little rat Coco and i did not refuse, especially since Ratty has disappeared.  Something has happened to her and I cannot figure out what.  She was our tame and super friendly baby.  She stayed around us the entire time she was out of the cage and would come to you when you called her. Two nights ago, she was with us and after showering and cleaning up  we noticed she was not around.  We looked for her and decided she must have fallen asleep somewhere and would show up sometime in the night by snuggling up to us.  She has not been seen since.  I fear something happened because it is not like her to hide.  She needs people and thrives on food and attention.  Kipper was searching for her all day and making weird little noises.  At least Coco will keep her company.  Thankfully she is a young baby so I can potty train and work with her to come when called.

We ran around a bit this afternoon taking a client to a few stores. I also was able to work on some flyers for this huge estate sale.  I mean Huge.  I will post pictures soon.  All I can say is that if you like fabric, call me or email me because I have over 1 ton of fabric.  nice fabric too and should think about opening up a fabric store. This picture is a small sample of how much fabric there is. 

Now for tonight-oh my.  Kevin was fortunate to have a great day with mom.  She laughed and visited with him and still discussed her video prank.  She even mentioned hiring a lawyer to protect herself again anyone that would deem it abusive.  She is so adamant with it  and find her so amazingly strong willed and full of zest.  I am bewildered by her. She is so unlike any Alzheimer's patient that I have ever interacted with.  She is so aware of her condition and her inabilities, she does not forget.  She was able to pay such close attention to her medicine in order to take the right amount so she would not wake up my father at nigth anymore.  She hates that she wakes him up and is trying anything and everything to stay in her room no matter what.  She will sit in her bed watching her blue screen rather than go to him and ask him to put in a movie or turn off her tv.  She will sometimes pee in her depends at night rather than go get him to help her pee.  She is able to tell us this and how much she hates that she cannot do anything.  She can tell us how it feels when she cannot do something She is fully aware of each loss of her mental functioning despite not being in the earlier stages. She has remained a fighter and is still struggling to maintain her Independence.She tries to adjust, make excuses or anything else to continue to leave a live that is worth living. She struggles to comprehend conversations going on around her and is aware when people talk to her like an idiot.  I think that is the hardest for mom.  The talking down to her and not understanding that she is still there despite not having the ability to understand how to do something.  People, family, friends treat her like she is dumb or like a child.  She resents it and will tell me later how this person made her feel so inferior.  For isntance, at this Birthday Bash for my grandmother this weekend, she felt so stupid and like a child.  Everyone was telling her where to go, what they thought she was saying.  People just try to finish what she is saying and do not let her think it out.  They tell her what she means and that is frustrating to her.  She just wants to be treated like normal, to heve people say and interact the way they used to.  She knows that she looks so lost but inside her head, she knows exactly what she wants to have happen.  her body just won't do what she wants it to do, her mouth won't speak the words, her hands wont move the right way.  She is completely useless and she is aware.She hates that she cannot be a granmother to her grandchildren.  That they will not know her or the things she used to do.  That they see her as a child.She hates that this disease has brought so much pain to her children and husband.  She hates that she cannot retire and travel with my father.  She feels robbed of her life and feels as though she is stealing ours.Her brain is dying bit by bit each day and tehre is nothing she can do to stop it Tonight she could not open her drawers to her dresser.  She tried for over half an hour and could not make them open or close. Every day new tasks that I forget even exist become forgotten by her.

Well tonight went well for ten minutes.  She told me she had a great day and was so happy.  Then she became upset about her hair and that it was itchy becuase Kenzie threw flowers at her at the party.  I washed her hair for her and she did not think i did a good job like my dad.  She asked me to have dad wash her hair but he was busy. S o I washed it two mroe times.  Thenit was great.  She complained about being itchy still throughout her body.  Then she got distracted and wanted her drawers cleaned out.  We made it through over 8 drawers and then she wanted to stop and watch the movie before it got to late.  It took her about 8 minutes to pick out amovie.  She chose Sabrina.  About half way into the movie, she started complaining about her bed and wanted it all washed.  I told her it was too late to wash all the bedding.  She started cussing at me and told me that it was my fault.  That I am mean and she hates me.  She never wants me to come over. I somehow calm her down and wash one of the blankets that she sleeps on.  She then decides that she does not want to watch sabrina and needs a different movie.  I tell her that it is too late for me to watch Meet Joe Black because it is three hours long and I have to get up at 6.  She startes moaning and crying.  Then starts screaming F you I hate you  you ******** b*****.  She continues to scream at me and starts throwing things off the dressers.  I walk out and she comes out intot he kitchen screaming and stats throwing stuff off the conunter.  Calming I tell her if she continues to throw, I will have to restrain her which she deos not like.  That stops her from throwing but not from screaming at me.  I realize at this point I need to connect with her motherly instinct.  I tell her it is ok, that I will watch another movie and stay the night.  That i will call Kevin and make him get up at 6 so he can watch the children so Jason can go to work.  Sure enough that does it.  She says noo I won't do that to you guys.  Keving cannot wake up that early.  Crisis over and still agitated.  Dad comes home and he helps calm her all the way down.  He tells her to twacth happy everafter and that he will put in the other one when it is finisehed.  Since it is short, I tell her that I can stay to watch it so that Dad can go to bed without having to deal with her. Half way into the movie, she decides it is time to take her xanax.  She takes it and is completely convinced that she still needs to take some.  That she did not take it all. Freak out number three. She starts to scream again at me telling me that I am trying to kill her. that she has to take it or she won't sleep.  I try to convince her that she did take it and somehow between Dad and I we are able to get her back to our world.  She then cries for the next half hour to me and tells me she is sorry. She wonders why she acts so mean to me and wishes she did not do it.  I tell her that it does not bother me and I can honestly say it does not.  I can only imagine that this could and possibly will be me in twenty or thirty years and how awful it must be.  No matter what stresses we have as care givers, it is nothing compared to the hell that is going on in their bodies and mind.  They live in a hazy jumbled, world filled with fear, distrust, and confusion.  Nothing makes sense and they have to live in that body every second of every day.  We can escape whether it is for a few minutes or a few days on respice.  We can still try to live a normal life in between all the craziness of their world.  They never get a break, never can leave their horrible world.  It is 24/7 .  I watch my mom and no matter what she does, I am thankful that I am not there yet.  That I can think and move as I want. People say how hard it must be for us taking care of her.  Yes she is hard to manage, yes she can be a non stop attention seeking person, ultimately, she behaves as most two year olds do.  She throws tantrums, she cries, she is selfish, she cannot pee on her own, she cannot eat by herself.  She resembles a two year old in all ways except that she is aware of it.  But really, I hate the pity. I feel it is so unnecessary.  If they want to feel bad for someone, it should be the one that lives  in that horrible world all the time. Every second I am with my mother, I am reminded that this could be me.  Kevin and I have a 50% chance that this will be us and I can only hope that someone will take care of me with the understanding of how horrible it must be to go through it. Sorry for the rambling but this is what late night blogging does to me. Good night to all~~

Thursday, February 17

My dear Gloria

I have not cried like this in a very long time.  Tears are pouring out and I cannot stop them.  My little "adopted" girl Gloria was taken today into protective custody and I feel so conflicted.  I know that it is the best thing for her and yet not being able to talk to her or know how she is doing has broken my heart.  I am in utter anguish-it is like my own little girl has been taken from me.  No matter what I do I cannot stop thinking about her.  The worse part is that since she falsely accused her uncle of choking her a month ago, I have not allowed her over until she retracted her statement.  Since she never retracted her statement, I have not let her in despite her many attempts to come over.  Just Saturday she called me and I had to call her back.  When I did, she was not there.  That was the last time I heard her voice.  And right now for some bizarre twist of fate, I just want to call my mother and cry to her.  It has been years since she held me in her arms and comforted me.  Mostly because I did not need much comforting throughout my life.  But when I did need a good hearty cry, into Mom's arms I went.  Now, I cannot even mention this situation much less shed a tear over Gloria.  There are just those moments in life when a girl needs her mother and this is one of them.  Please say some prayers for dear Gloria-that she is in a good foster home.  Thanks.

Wednesday, February 16

Late nights

For some reason, I find the peace of the late nights refreshing.  It would be my dream to go to bed early and arise by 4 so I could relish in this tranquility.  But due to reasons beyond my ability to change, I am confined to enjoy these hours by chance.  Tonight is one of those nights. After being at my mothers and trying to go to sleep when I got home, I was awaken by two little ones both running a fever.  My son's fever has come back to an astonishing 101.0 and my daughter is maintaining at 101.8.  I think another visit to the doctor's may be in order.  This is the third day on Tamaflu and antibiotics.  I would think it would have gone away by now. 

Wow-things with my mother are definitely getting strange.  She is much more aware of how little she can do and it plagues her every moment of the day unless distracted by something else.  Last night my mother woke my father up because she had to use the bathroom. Turns out she already did-there was  big pile of excrement by the toilet.  What fun at 2 in the morning.  Today she continued to try to use the bathroom by standing over the toilet and not understanding the concept of sitting down.  When I arrived there tonight, mom was completely naked just siting in the living room chair.  She complained of pain in her bottom and when I looked, I noticed a diaper rash.  How strange to see diaper rash in my 56 year old mother.  I was afraid when we started the depends that this would happen.  I mentioned to both my father and brother to have her wear her dainties during the day and use the depends for night time use.  Dad picked up some a & d ointment and that seemed to have soothed her for a bit.
  It was amazing watching her try to go to the restroom.  As I watch her, she makes this one face that reminds me our Dirty Rotten Scoundrels when Rupretch uses the restroom at dinner.  She kept talking about this not being right and that they needed to see the little things to go to the bathroom.  she talks about the little bits and points to three places on the wall in front of the toilet.  Once she sits, she lifts her feet off the ground because they will make the pee come out if she does not lift them.  She believes that pee comes out of her feet when they get wet.  She also has to hitch up the pants so that her ankles are exposed.  If I come to close to her she cannot pee, if I leave the room she cannot pee, if I talk or move she cannot pee.  I have to sit there and listen to her pray to pee.  Then her saying it is coming it is coming hear it...She will then stand and pull her pants up while I frantically remind her I have to wipe her.  All is finally done.  We return to her bed and she wants to drink but is afraid to drink because it will mess it up.  She believes that if she drinks she will have to pee before the right time and then it will keep her from sleeping.  I convince her to take a sip of water and she has a hard time finding the hole for her mouth. She struggles with lifting the bottle and I help her.  She gulps a little sip and a bit of water drips down. We try to pick out a movie and she cannot make up her mind.  It takes twenty minutes to decide on Serendipity.  The entire time she does not talk, she looks miserable and there is no more joking, teasing, loving.  All has gone away and I realize it has been a few weeks since I have seen any joy in my mother.  She is completely lost to me now and I must remind myself of all those wonderful nights where there was joy and silliness.  After finishing the movie, we take her night pills and she cannot put a pill in her mouth. S he actually puts her fingers to her mouth with nothing in it.  I put the pill in and pour the gatorade into her mouth.  She is able to swallow the pills this time.  I get her dressed into her clothes and help her get settled into bed.  She decides to have me take the dollhouse home tonight and helps me get it to the car.  She feels so proud that she actually accomplished something and tells me so.  I get her back into bed and say goodnight. Now I must go my children are summoning me....

Saturday, February 12

taken back

What a crazy day yesterday.  Started with a late start for Kenzie and I.  Luckily I was able to get two children and myself up, dressed, fed, and to school within twenty minutes.  From there, Connor and I took one of the teen mothers to the Dr's for her check up.  Thanks to Dr. Khan we were in and out and I was on my way to meet a daughter of a hoarder that we are helping run an estate sale.  Got home and made Connor a meal while April came over to spend some time with him.  She is such an angel and a blessing.  I am amazed at her abilities for being so young. Despite her 11 years, she acts as though she is 18.  Not to mention she has such great manners and disposition.  I leave to meet my dad to discuss cell phone plans and then back home to grab Connor and April to pick up Kenzie. Pick up my dear and then to check on Grandma Fischer.  Run home, drop April off and get ready for mom's tonight.  After Mom's, I am supposed to go sleep over at my friends house to watch her children because she will be induced tonight at midnight.  Unfortunately, or fortunately depending how you look at it, she is being induced early and once again April and Pattie come to the rescue.  They will watch the children until 8:30 and then bring them over to our house.  I must say how blessed I am to have such a great husband.  He is exhausted and tired from all these six day work weeks and yet he is still willing to watch five children, four of which are sick.  Luckily for him, they all sleep.  I go to my mothers and stay until 12:30 and arrive home.  After fifteen minutes, child one is up and feeling quite hot-temp 101.  Ten minutes later, child 2 is up-temp 100.5.  Round two of medicine is given. An hour later and he is asleep only to have Connor up-his temp 100.8.  Round three of medicine.  Now two in the morning I head to bed.  A short while later, I awake to hear my friend's son calling out for me again.  His fever is now 99.9 and he is afraid of my dog.  I call his father and get permission for him to crash with us.  He is back to sleep and it is now 3.  At the break of dawn, I hear a little voice calling out.  Up I go to get their daughter situated with a video and back to bed for thirty more minutes until my own little girl is up and ready to go.  Finally I decide that sleep is overrated and get up too.  Right now 4 of the 5 are coughing, watching Tom & Jerry, and I am surprisingly awake.  Breakfast is cooking, baby is still not here, but life is good.  Next week I am definitely not doing much of anything :) or at least I think so.

Now about last night-my poor poor mother.  Wow how quickly this disease is taking away all of her and I mean all of her.  When I show up there, she looks completely confused and no sign of joy at all.  I talk her into taking a bath.  When we start the bath, I am amazed at how much she jerks and trembles as I aid her into the water.  She does seem to relax and just soak up the water for a bit.  When we get out, I try to get her to lift her leg to put her pants on and she just grabs her pajama's. After repeating this fifteen times or so, we finally get one leg on.  We repeat the process with the other leg and finally she has her pants on.  After dressing her, it takes us 50 minutes to pick out a movie.  She hates that she cannot watch movies on her own and is dependent on us.  She hates having to go to bed and she revealed to me that she will sit there at night starring at the tv since she cannot turn it on.  At least she is trying to respect Dad and not wake him up for the movie.  She calms down and we start the movie.  The entire time she is thinking about what to watch after I leave, how to go to the bathroom on her own, why she cannot work her dvd player, everything but enjoying the movie.  Towards the last ten minutes, she finally relaxes enough to enjoy the little left.  After the movie, she is ok about everything and we choose her final movie for the night.  I hate to see her so upset and distracted as she was last night.  Tears came to my eyes at least twice because she wants to be so independent and hates having to rely on us.  She was such a control freak and it drives her crazy having the control on us.  when I left, mom was happy and content.  Twenty minutes after I left, she calls hysterical because she thinks Dad woke up and turned on lights.  I feel bad for Dad and wish we could get mom on some sleeping aid.  Yet she is still too aware for us to do it to her.  I know too well the frustration of interrupted sleep.  Mothers especially are familiar with this phenomenon for at least the first three years of children's life.  You never know when your child will wake up screaming or crying from a  nightmare,  throwing up on you because htey are sick, or just wanting mom's attention.  It is so easy to forget how much they need you and depend on you.  I can only image how Dad feels and do hope we can get her resting more easily at night for his sake. 

Wednesday, February 9

37 year anniversary

To those of you that read my late night post-sorry I deleted it but after rereading it, realized how much rambling I did.  I had gone over to my mothers and was so sleepy that I kept falling asleep to a five hour movie called pride and prejudice bbc style.  My only saving grace was she wanted it to be finished by 11 so we had to fast forward the parts she did not want to watch.  Thankfully she did not realize I kept dozing or it could have been bad.  When I got home, my poor son had a begining temp that continued to rise.  He ended up throwing up allover the place late late last night.  It continued throughout today and now is resting well. Busy day cleaning beds, couches, toilets, and everything else that he christined. 

Last night was quite difficult to handle emotionally.  She was so confused-she hates having to go to bed early and does not understand why we want to do it to her.  This one change has her completely thrown off.  She cannot choose what movie she wants.  Literally we put in one movie and as soon as it starts she asks for another.  We put it in and as soon as that starts she wants the first one.  Try doing this five or six sometimes ten times without losing your patience.  It is a true skill.  Then she gets hot, the air comes on she gets cold then it turns off and she is hot...All her movements are getting much more rigid and difficult.  She cannot drink well from the cup or swallow her pills without extreme trouble.  She no longer attempts to wash her hands-we have to remind her which she repleis I know that I have to do it.  She pets her blanket instead of Daisy, grabs your hand as a phone, and generally gets lost in most conversations. Today was her and my father's 37 year anniversary and we could not say anything.  The first year that we neglected to remind her.  Every holiday becomes a fiasco so we figured why ruin the day.  This way dad can celebrate by remembering some of the good dinners and dates they had rather than try to patch up a broken day.  But for what it is worth-HAPPY ANNIVERSARY DAD & MOM.  WE love you and are glad you made it through 37 years.

Tuesday, February 8

been a long time

I just found my video editing software and so providing more video footage will soon follow. BTW-this is the famous plate from my youth that I now use almost daily :)
  I am so tired and have been running around since my father's birthday.  I have become so involved with our teen girls that I have had no time to do much of anything. With tax season, I spent the remainder of January sending out our tax letters to those that donated, getting WIF finished with the taxes, and finally did our taxes.  Jason has been working so much that it is taking some getting used to-He wakes up now at 6 (tomorrow is going to be very tiring for me :) and works often until 5 or 6 in the evening.  I am truly a house wife now.  Unfortunately, I am doing so much for WIF that I spend the days running to take someone somewhere.  I watch children for those teen mothers that are looking for a job, I hunt for furniture for the family whose children are sleeping on the floor.  I take my teen girls to programs, doctors, stores, getting them the resources that they need.  I told Jason I am taking a week hiatus to relax because I am tired.  For instance this past weekend: Thursday I took one of our pregnant teens boyfriend, another young man, and my children to help a church with setting up for a yard sale, that night I met with Reaching hands to discuss our working together.  I was there until 11:30.  Friday was Jason's birthday.  I watched a family with three children during the morning since the mother is pregnant with the fourth and needed to get some things ready.  After that, two of my teens came by to talk.  That after noon, I went to visit Grandma Fischer and then dropped off my two children at my friends house so that Jason and I could have some time alone for the first time in a while.  We went out to dinner and enjoyed a night out.  I drove back to pick the children up at 10 and they were still awake.  My friend made the mistake of putting on a movie (which my children will not sleep to-too conditioned to sleeping in bed with no tv) I had a birthday party the next day that I threw for this 7 year old because she had been through some rough times. 

I finished decorating at 1 and connor woke up at 2-5.  Kenzie woke up at 7:30 and we finished decorating.  The party went until 2:30 and then my teens boyfriends came over. The cake to the rihgt was amazing and donated by   I headed up to my mothers, stayed there until 12. Mom freaked on me (pulled my hair, scratched my arm, and hit me) and finally calmed down.  I got home and had to go to the hospital because one of my teens had contractions.  I was there until four in the morning .  That is how it has been since i last wrote my blog.  For those of you that do not know, Works in Faith has ventured into a program that we dubbed Teens N Tots or T-N-T for short. I mentor teens that are pregnant or have just had a child to help them with their spiritual walk, mental well being, educational help, etc.  our goal is to help them become independent of society not to enable them to live off of others.  We have 8 girls about to start with us-currently five are enrolled.  They range in ages from 12 to twenty.  We have outfitted four households with cribs, linens, clothing, pumps, bottles,  and virtually any other item that they need.  Starting in March we will have mentors that work one on one with each girl. Very exciting but very time consuming for now.  Keep us in your prayers
ok enough about my schedule-just had to vent because I am slightly tired from the running.  I do realize that I need to probably slow down-I can hear you all now saying that I am going to burn out and get sick. My entire life has worked like this.  I produce much better when I have no time to think.  I am hoping though to take a quick winter reprieve to do some skiing (possibility presented itself today).

So back to Saturday night with my mother.   Guys things with Mom is definitely changing.  She is still aware of her shortcomings and inabilities to do stuff.  However, she is becoming much more glassy eyed and confused.  She cannot turn on water anymore, has a hard time sipping from the cup or taking her pills.  She does not understand how to choose movies anymore, and is now in depend dainties.  For the past three weeks I have mentioned that a woman my mother admires very much wears depends.  Although it is not true, it made my mother feel better.  She finally tried it on Sunday.  Saturday night after watching movies, I decided to take control.  I was tired of feeling bad for my father for being awoken every night by mom to change the movie or take her to pee.  I kept thinking to myself that we are letting a woman with alz. control the situation and that made me laugh.  How inthe world are we going to take care of her if we do not gain control of her and her life.  Saturday night I told her that she no longer could stay up at night.  I told her that if we are her care takers then we make the decisions.  That we cannot help her at night and she can no longer do things on her own.  She agreed that she needed our help but did not see the problem with waking Dad up or calling me at 4 in the morning.  I told her that we cannot keep calm and happy if we are tired.  I tried to rationalize, explain, and inform.  She understood everything and hated me for it.  She told me I was taking her freedom and taking her control.  I mentioned that it was not me but the Alzheimer's that takes her freedom. That calmed her down -I know that all the advice out there says you should not mention the alz and what it is doing.  In my mother's case, she wants to know what it is doing to her and wants to be made aware of it.  Not all the time mind you, but often.  It was during this time that she told me to **** off and that I was a horrible daughter with no heart and no soul.  That I was evil and mean that I did not love her.  She pulled my hair about three times, hit me in the face, and scratched at me.  I simply told her that she could hit me, hurt, me pull my hair, but she still had to go to bed at a decent time.  She can no longer stay up until three in the morning watching her movies.  That come 10:30, she needs to put her last movie in and take her meds.  When I left, she understood-hated me but understood.  She called me at 12:30 to apologize and realized that she needed to go to bed earlier.  The next day she hated me again and I am sure tomorrow morning she will hate me once more.  But by the afternoon she will be ok.  And guess what, dad had a restful sleep last night...