LBD: Hello, Goodbye/ Hello, Goodbye

Today is New Years Day, 2012.  How incredible.  This year went by in one large blur.  Often I felt like I imagine Rip VanWinkle must have felt when he woke to discover he’d just slept away all those years.  Time passed and I was so busy I hardly knew time was passing.  I’d acknowledge a new month and the next thing I knew it was the end of that month.  December wasn’t any different, except that it got even busier. As I sit here typing, I’m trying to comprehend that December came, went and took 2011 with it when it left.

The last few weeks of December were especially challenging.  Added to the normal hustle and bustle of the Christmas season was the fact that my dad’s health deteriorated dramatically.  I don’t know whether you’ve ever heard of LBD (Lewy Body Dementia) but it’s a horrible illness.  It’s called the disease of 1,000 goodbyes and I’ve decided to add- the disease of 1,000 hopes crushed.  LBD is certainly a dementia but it is so much more than that.  Some moments, almost no dementia type symptoms display-hopes are high, life is good, maybe dad is getting better!  The next moment, all reality is lost.  Up down, up down, up down.  Hello, goodbye, hello goodbye, hello, goodbye.  Sometimes it can hold for days, sometimes weeks.  Recently, it’s been hours.

Through this holiday time, we’ve had to be with him almost 24/7.  It’s been a heartbreaking, gut wrenching experience.  So many uncertainties.  Is this the new ‘norm’?  Is this just because we’ve had to stop his leg medication?  You see, dad also has RLS.  I don’t mean the kind that makes you want to switch positions and move around.  I mean the kind that literally throws his body out of bed.  The kind that leaves him black and blue from the mid thigh to his feet because of uncontrollable kicking.  The kind that assures there will be no sleep for him, period.  Who can sleep through all that thrashing?  New sheets, torn to ribbons, the first night.  This has gone on for years-at least 12.  Dad is the strongest man I know– person I know.  Days and days, nights and nights, of no sleep…just keep moving so the legs can’t run.  We live in the land of the midnight sun.  Dad’s been a farmer all my life.  He’s spent untold nights hoeing potatoes just to keep moving.  If he stops, his legs go berserk.  I frankly don’t know how he’s done it all these years.

Because of his LBD, there are many medications which dad can’t take.  They either affect him very negatively or they just don’t work.  The one that has worked in the past, recently stopped working and began making his symptoms worse.  This has happened several times over the years and dad’s had to go through what’s called augmentation.  It’s incredibly hard on him, every augmentation gets harder and harder and he loses ground that’s never regained.  This augmentation seems to have been the straw that broke the camel’s back.  However, dad is a true fighter.  He is still here when many, many others would have given up and died, with or without help.  I am a Christian believer.  I do believe that life and death is held in God’s hands but I have empathy for those who find physician assisted suicide a viable solution.  I empathize but I disagree.  I know I want dad’s suffering to end and it is deep suffering, indeed.  Truthfully, we as humans don’t let our animals suffer the way my dad has suffered on and off through these past years.  I don’t understand everything about suffering or the necessity of it.  It seems like dad’s been given a burden way too big to bear.  But bear it he has, with dignity and long-suffering, never wavering in his belief in a good and loving heavenly Father and in his precious Son.  Watching dad has helped me through my own crisis of belief, which was deep, wide and maybe the subject of a post on another day, who knows.

I don’t know what 2012 holds for dad, or for any of my family, for that matter.  All I can do is treasure each day and give back to Dad all the care and love he’s given to me throughout my life.  And I can pray and believe that he truly will not have to go through more than he can bear.  I can encourage him and empathize with him and do what I can to help him go through whatever more lies down this road.  It seems like such an insignificant amount that I can do.

To any of you who are going through the illness of a loved one, I’m truly sorry.  I pray you’ll find strength in your weakness, the ability to let go of any unforgiveness and find love you didn’t know you had.  I believe that nothing is wasted in this life.  Sometimes it means leaning into a hurt, or a crisis, instead of running from it or denying it’s there.  My prayer for myself, and for anyone going through something similar, is that I allow this to soften me, to make me more understanding, more empathetic, more caring, more loving.  I believe by doing so, I can overcome the horribleness of this illness.  It will not have conquered him or me.  It will not win.  Hello/Goodbye, Hello/Goodbye.  Good moments/bad moments.

As I finish typing this, the phone rings.  It’s dad.  It’s been three weeks since he’s been able to call me!  “Hi,” he says, “what’s happening”?  Such a typical dad greeting- so very him.  “Hi, Dad”, I respond, while completely savoring this Hello moment!


About sehanna

I'm a stay at home wife and mom of three, who enjoys my 'job' very much. My children are getting older and beginning to stretch their wings, which is leaving me more time to pursue my interest in writing.
This entry was posted in Family, happiness, parenthood, positive attitude, reflective, Uncategorized. Bookmark the permalink.

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