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Tuesday, July 13

After travel

I must admit that it is hard being away from my in-laws.  I had such a good visit with them and truly love every minute I am there.  When I come back, I realize just how bizarre our life is and feel so bad for my dad.  We are all stuck in limbo just playing a waiting game.  We know that it is inevitable that my mother will die and we just watch as skills slip away.  With death, the loss is great but you can have closure and eventually move on with your life.  With Alzheimer's you suffer as your loved one suffers, you mourn the passing of the person you knew and are left with a stranger that you must love and take care of.  With my mother, it is horrible because she is aware of what is happening.  She forgets somethings, but never the fact that people do not call her anymore, that no one wants to talk with her, that people stop looking in her eyes, her friends had all but disappeared, family is slowly forgetting her. 

 It is amazing that this woman who took care of so many people and did for everyone now has a handful of people sticking by.  I must admit I am surprised at how much my uncle and aunt do for her.  There is no one on Earth like my aunt-so patient, sweet, caring, gentle, happy. In thirty four years I have honestly never heard her raise her voice above a gentle Spanish accented exclamation of joy.  The evidence of her amazing nature and my uncle's enduring spirit is in their son.  If you get a chance check out http://www.damoncastillo.com/.  This is his amazing and multi-talented band. 

Anyway, when my mother is with her, she is calm and happy-everyone around her is like that! Both my aunt and uncle are there for my dad, whisking him away and reminding him that life goes on.  Thank you Uncle George and Aunt Amparo for caring and helping.
So yesterday, after getting in the night before at 12:45 and sleeping for about 3 hours, I got my affairs in order and headed up to my mother's house.  According to my dad, she was pretty off the wall so I put on my actor's mentality and charged into the house like a peppy cheerleader on speed. I noticed that my mother finds it humorous if I break out into dance and song after movies or act like one that is in the movies.. At first it took all my strength to break out and act the fool.  I was so uncomfortable and so atypical of my behavior.  Now, it has become second nature to be the fool.  I skip, jump, dance my way to the bath, to her room, back and forth around the house.  Last night dad mentioned that I seemed so happy.  I looked at him and said Inside I am exhausted and want to crawl to bed for a 12 hour sleep marathon but I am in the actor's zone.  The show must go on and I am ready to play my part.  So I dance her into the bathroom and give her the bath.  She had a very difficult time expressing things and was quiet frustrated at the inability to say what she wants to say. 

During the bath she wanted the food I cooked for her.  I brought her BBQ chicken, purple hull peas (from Grandmama's garden in MS) and mashed potatoes.  She ate like a ravenous dog-shoveling it into her mouth.  This was the first time I saw her eat like that-literally pushing food into her mouth faster than she could swallow it (do not forget she is in the bathtub)  What a humorous sight.  She becomes relaxed and mentions this new idea she has.  One thing about my mom is there is still her crazy humor underneath all the rest of the stuff that this disease has brought. Early, my brother was visiting with her and she discussed youtube with him.  Here is what she wants to do.  She wants us to bring up  a topic like politics.  She will then speak about it and people will have the opportunity to guess what she is talking about.  The winner would receive whatever she felt like giving away on that particular day.  She also said that she probably would upset a great many people but that at least something funny would come out of this disease.  Kevin and I are actually considering it-I think for those who are so deep into the Alzheimer's world, it would bring some sort of comic relief. 

After bath, we cleaned up a bit and settled into her room for Emma.  She almost made me watch Simply irresistible but thankfully I was able to get out of it.  We start it three times over adding another half hour to the movie.  She is so distracted about her pills and the light/fan, the air conditioner, the bathroom.  throughout the movie, she keeps wanting to talk and stop the movie but then tells herself to shut up.  We eventually hold hands and she finally relaxes enough to enjoy the movie.
During this visit, I noticed such a decline in her appearance and her movements.  Everything has become jerky and uncontrolled.  She tries to put clothes on and takes them off forgetting what she was trying to accomplish.  She put her nightgown on as socks and her dainties over her head as a nightgown.  She spilled her drinks, her food, and the ice cream.  She walks hesitantly and nervously.  Her expressive language skills are becoming worse.

Summary of her skills
Motor Skills
she cannot stand on tiptoes or on either foot for more2 seconds.  She creeps up stairs placing both feet on each steps.  The rare instances that she runs, it is stiffly and she stops with great difficulty.  She cannot jump over items or even on one foot.  Kicking, catching and throwing with purpose are no longer evident. 
Fine Motor Skills.  She does not exhibit a pincer grasp anymore and cannot play a simple game like pat a cake.  She cannot put items into containers with good grasp and release.  She has a hard time unwrapping items such as cough drops.  She cannot nest or stack objects or move fingers independently.   She can still cut with scissors though.

Self Help Skills
When eating I notice that she munches food-mouthing it more than biting.  She does pull food off the spoon but no longer keeps her lips shut as she eats.  She cannot insert a spoon or fork with out moderate spilling. She can still undress but has extreme difficulty with dressing herself.  She cannot unsnap, unzip or unbutton most items nor can she fasten them.  Her toileting habits are decreasing.  She has occasional accidents now and does not wipe her self appropriately.  In bathing, she can no longer wash herself, adjust her water temperature, or dry herself.  She no longer grooms herself-she cannot brush her hair or cover her mouth when she coughs.

Speech Language Skills
She cannot participate in conversations without monopolizing it and cannot answer when questions.  She does not use past tense and cannot take a simple message.  She is unable to recall any personal data except with regards  to her brothers and sister, kids, husband, grandchildren. Her vocabulary and comprehension are still remarkable. 

Social Skills
She is afraid of strangers, cannot take turns or share, decreased awareness of good/bad behavior, reacts to disappointments in an unacceptable manner, cannot remain on task for more than ten minutes, and cannot finish what she starts without prompts.

1 comments:

Kimberly said...

Susan, how do you get her there. I cannot picture getting mom there? I may give it a shot. Thanks for the information about the Lewy Body's alzheimers. I have thought she has some of the characteristics. Thanks for all the information!!!

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