Tuesday, October 5, 2010

October 5, 2010

Today was a long day, but a good one.  We started out around 11:15 this morning and got home around 6:30.  Mom had her radiation treatment which went well as usual.  We met with the doctor and he is pleased with how things are progressing.  Mom is a little fixated on her weight - she is down to an incredible weight and everyone agrees she looks GREAT.  But the nutritionist and the doctor were able to offer me some support this time.  They fully agreed that mom can NOT be fixed on her weight - that she must focus on eating, on nutrition, and NOT loosing weight.  Mom finally agreed but for those of us who have been in the weight battle before know how hard it is especially if you suddenly find yourself at a low weight - you want to keep it there.  However, the doctors agree that if she gained a few pounds, it won't be a bad thing.  So we won't shy away from butter or focus on counting calories.  It's tough when your stomach has shrunk.  You'll recall that mom just got her g-tube removed.  Since she was on liquids for several months you can imagine that her stomach is now a little smaller and taking in whole foods is a challenge.  But she's fighting for her life and she knows it - she does great and will even take a little nudging from her loving son to "finish what's on your plate".

Dad had an EEG today.  This is the second test the neurologist ordered.  He had an MRI as well, last week.  These tests will rule out silent strokes, blood clots, aneurysms, tumors and growths as possible reasons why Dad's short term memory is slipping in what has been defined by his doctors as 'rapid decline'.  Unfortunately those of us around him would agree and are working feverishly to help him remember the day-to-day activities.  For those of you who continue to send dad cards and letters with memories, photos, stories, etc., we send a huge thank you.  Some people have called Dad once a week to quickly talk to him.  they understand that Dad doesn't have much to say but that's not the important part - it's not about quantity, it's about quality.  And a phone call once a week to remind him he is loved goes a tremendous distance.  Those stories of days gone by, those photos, those little snippets of memories are so valuable and so important. You are all a part of creating more positive memories for Dad.  Thank you so much for your part.

As we wait for the test results (which we will have next week) both Mom and I are torn.  There is a small part of us that, although we want dad to be ok, are hoping there is a curable reason rather than Alzheimer's.   We picked up some books today at the neurologists' and mom and I are reading all about nutrition, activities, exercise, etc. to benefit Dad.

Thanks for your prayers, your thoughts, your support.  Remember that you are all a part of our CaringTeam...and trust me - I know that sometimes you can forget how quickly time passes, you can too easily push the troubles of other people out of your mind for one more day, you can make an excuse of why you didn't call last week:  trust me, I know.  I've been there.   - but for those living with this disease, there isn't time to sit back and think about what to do, or what to say, or how to approach it.  You just do it.

As I close I will introduce you to a man that I have called my Mentor for years.  I met him in 1988 as I was called to minister in music at a small, Florida country church in Zellwood.  His name was Pastor Harold.  He taught me so much about life, and faith, and making the right decisions.  And when I made the wrong ones, he still loved me.  I allowed some time to pass before I sat down to write him a letter to tell him how much he meant to me - to touch base with him - to remind him that I cared and loved him.  But by the time I finally got around to it, Pastor Harold had passed away.  In fact, I found out about his passing almost 8 months after the fact.  My heart is still so wrinkled over that.  The point I'm trying to make here is this:  no, neither Mom or Dad is not on their last legs - no one has told us that the end is near - they are both still young; but the fact is you just never know.  You don't - and I sure don't want to know that any of you will live with the heartache that I do, now, over Pastor Harold.  Oh I know that he knows - but I didn't take the extra step to continually tell him.  so love your family and friends - remind them daily that you love them.  Don't let an angel fly away untouched.

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