Thursday, April 28

Anyone else experience this

I am back from visiting my in laws and am still trying to catch up to my life back here.  I have driven 41 hours in the past week with two little children and I believe I am still twitching.  I must say that I am proud of my two, they actually made the 18 hour trip each way without bickering or fighting.  It helped that my father let me use his newly acquired van for the ride.  Having so much room made rest areas a delight.  The children would run and climb over seats and get out all that energy.  I am happy to be home and greatly missed my husband.  It was nice to come home to refinished floors and Kenzie's new painted room.  The strangest part about the trip was how much I missed my mother, father, and brother (as well as my husband).  I am used to the daily coffee conversations with my brother, the check ins with Dad, and spending time watching movies with mom.  I really missed her and was terrified at how much she would regress while I was gone.  Surprisingly, she did not regress as much as I thought.  In fact, movie night Tuesday was the best one in a long time.
I am completely baffled lately though.  I have been studying up on Early Onset Alzheimer's because I am getting ready to test myself either through my doctor or through a research program.  As I read and study each resource, I am noticing that my mother is quite rare and unusual.  As I reread her PET scan reports and watch her, I realize how blessed and cursed we are at her progression.  As every little ability ebbs away, the only thing that stays is her unbelievable ability to understand everything around her.  She is starting to slip away little by little but it is so unlike what many typical Alzheimer's represents.  For instance, I took her to the ER on Tuesday because her hand is grossly swollen.  it looks broken but does not bother her.  We get there and my mother is more concerned with how long it will take because she wants to get home for our movie night.  She tells the nurse that I have been gone for a week and she wants to have a special night with me.  How is this possible, she cannot scoot herself onto the bed, has trouble with sitting in a chair, and definitely cannot feed herself anymore and yet she is able to complete such complex thoughts.  I notice that she is not losing her ability to read people, understand conversations, remind you to set up appointments or ask for her social security money each month.  She knows who the president is and what he does.  She still prays for my brother's salvation and still worries about what others think.  She is still very conscious of herself and the way she looks.  I have researched so many diseases and genetic issues because she is so unlike what many people with alz are like.  During my speech and Language undergraduate work, I was trained to work with patients with Alzheimer's.  Not one of them was like my mother.  Of course it is natural to question is it truly Alzheimer's and after all that I read, I am convinced that she has such a unique Alzheimer's that is affecting other areas of the brain, doing the same thing as normal Alzheimer's just in different areas.  I think because of her age of onset, the radiation from breast cancer, and her knowledge of Alzheimer's from taking care of her mother all helped her retain the long term memory, reasoning, and comprehension.  It is only the last few months that we started noticing her short short term memory was decreasing.  I am unsure if it is that she is forgetting or just not caring.  At least now her behaviors are not as severe and she is generally placid.  It is only on the rare occasion that she gets upset or agitated. Tomorrow we have an appointment with her Dr and i am going to mention the genetic testing.  If anyone has experienced this, please let me know.  I am so interested to hear from someone experiencing this because it is very different in how to handle her.  All the tips on all the sites do not work with her.  She is much to aware to trick her although it is getting easier to distract her.  I am off to bed-it is pretty late and I am going to regret being up this late tomorrow...


Sandy@Jesus and Dark Choc said...

Just found your blog through the Memory People group! I also have a blog and have been documenting life with hubs who has Early Onset Alz. It is such a crazy disease! I am sure I will stop back to read your blog more! :)

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