Saturday, November 14, 2015

Comments from you help me!

I read and post almost every comment you send me on this blog.  Why?  Because there is GREAT value in what all of you have to say.   Many of you are caregivers and some are patients with LBD or another form of Dementia.   I have written before that we are a "Support Group" unto ourselves.  I hope you read the comments of others, they offer another unique, important, factual, point of view of this journey.

I borrowed from President Reagan when he told America he had Alzheimer's.  He said, he was involved in  "the long good bye"!   He was right.  But this is also a journey through many changes, valleys, mountains and storms.  Sometimes  we have quiet waters, but we know, soon a new storm will overwhelm us.

I have learned to embrace and enjoy the quiet times of this journey.  The storm will come again and I will not be ready for it.  So there is no need to be apprehensive.   You will never be ready to face the challenges and you will never be strong enough to defeat them!  That was the hardest lesson I had to learn on this journey!  And my Wife has not yet given into that truth!  She still thinks we can fight and win.   But, we cannot and in this case, resistance IS futile!!

Another comment from you that makes me feel good is that "You Believe that I really am sick'!  So many times, I have been told I am not sick, and many treat me like a fake or a malingerer.  I know you see this in your lives, but it helps me to receive your support.

Last week, my Wife and I had an emotional conversation about how I was feeling and doing.  I said I wished we had a support group for those of us with Dementia.  She went to the Nursing Administer here at Azalea Trace.  She really liked that idea and we spent about 30 minutes fleshing out this idea.  For instance, I would like to see, be in, and experience, the "Memory Support" area BEFORE  I am bad enough to move in there!  I want to meet the staff and get to know them.  They should NOT be strangers to me, but familiar people I trust.  This alone would make that transfer easier.

Another thought I had related to my Navy career.  Before each Deployment, we had a series of "Pre-Deployment briefings for the Crew and Dependents.  I view this journey as a Deployment.  So, why not provide me some Pre-Deployment training and familiarization?

I have made a larger that usual downward turn recently.  One reason is, I have quit fighting to stay normal.  I am now comfortable with myself and my disease.   There is no logical reason to spend energy trying to defeat a foe I cannot defeat.  I pray that God gives me an easy transition to Heaven.  That is my only request.

I have been having a rocky journey lately, because of the recent progression of this disease.  I am much more introverted and I stay alone as much as I can.  For instance, while I am in the living room with my Wife, she is watching politics on the Television and I have my Bose Noise killing Earphones on listening to Christian music.  George Jones, Vestal Goodman, Doc Wiseman, and other folks that appear on the Bill Gather tapes.  I am in my own, isolated, world, untouchable by the things that upset me, but still with my Bride.

Please keep your comments coming and I promise I will post as long as I can.  All of you are a blessing to me.  Thanks!!

2 comments:

  1. I am still here...listening. It is now 2 yrs since my husband passed from complications of heart surgery and LBD. As I look back I think it would have been best for him if I had not fought so hard to save him. He lingered for 6 mos fighting urinary tract infections and each time his mind became more debilitated. A good hospice would have been a lot of help. I did contact Hospice but as we live in a rural area we didn't have a big choice and no one was familiar with LBD.
    You are so knowledgeable,about your disease..continue to talk with your wife so she can rest easy aout the decisions she will have to make. There will be those who will try to persuade her to take measures to prolong your life. She is in this with you and is suffering,too. A support group sounds like a fantastic idea. Go for it! You are doing a great job! I am praying for you and your wife.

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  2. Thank you for being so courageous by posting so much along your journey. It means the world to many of us. I'm glad you mentioned your noise-cancelling headphones. Need some of those! I'm glad your wife spoke up for you re: a possible support group. Hurray! Maybe 2 groups could meet at the same time but separately. One for those w/ the memory issues & the other for the caregivers. Keep it up Silverfox - we learn a lot from you.

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