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Showing posts from August, 2012

Provision

"What God Has Promised" by Annie Johnson Flint
God has not promised Skies always blue, Flower-strewn pathways All our lives thro’; God has not promised Sun without rain, Joy without sorrow, Peace without pain.

God has not promised We shall not know Toil and temptation, Trouble and woe; He has not told us We shall not bear Many a burden, Many a care.

But God has promised Strength for the day, Rest for the laborer, Light for the way, Grace for the trials, Help from above, Unfailing sympathy, undying love.


This poem is one of my favorites.  I have memorized and said it to myself countless times.  It helps me remember that we are not guaranteed an easy life.

The course of HD is a winding one.  Our family initially went through a time of deep mourning.  A year ago we were reeling from the diagnosis.  Today, we are in what I call a holding pattern.  Lacy is doing as well as we can expect.  His paranoia and delusion seems to be leveling off right now, or maybe we have just learned to work aroun…

Birthday

Today is my 56th birthday.  I was born in Fort Smith, Arkansas at 4:45 in the morning on August 23, 1956.

I spent the day with my colleagues - all good friends - at a workshop sponsored by our school district.  Sitting at round tables, we enjoyed each other's company and laughed at tales of the first three days of school.

One of our company was noticeably absent.  We were all anxious to hear from A. since her husband had been ill and was to have a medical treatment today.    In an instant our mood changed from cheerful to anxious.  One of us received a text and read the message..."This can't be right..."  We all looked at each other.  I assumed that my face was a pale as everyone's at my table.  A.'s husband had passed away.

The rest of the day was spent in a blur.  I felt as though I had been punched in the stomach.   After lunch, we were all able to meet and make a plan to help A. and her family.  Visits were arranged.  Money was collected for a run to Wal…

Unless...

This morning, Lucky and I strolled through the neighborhood on our morning walk.  The sun was out, but the rain a couple of days ago has brought with it much cooler temperatures.  Almost fall-like breezes blew all around us.  I'm hoping we have said goodbye to the intense heat and dry conditions.

Along the way, a gentleman was walking his dog (off a leash, of course) and the little Maltese bolted across the street straight for Lucky.  Poor puppy; he had no idea the heap of trouble a close encounter with Lucky would bring to him.  Fortunately, his owner caught up with him, and I was able to hold Lucky back, standing between my dog and the innocent little ball of white fluff beside us.

"Sorry!"  the guy was obviously embarrassed.  "He does great unless he sees a rabbit...or another dog."

For my part, I was just relieved that no damage had been done.  We waved at each other and Lucky and I continued on our walk.

Unless....what an interesting word.  I mulled it ove…

Caregiver Fulfillment

We think a lot about what our son is going through, and if we are not careful,  it can overwhelm us.    Living life one day at a time is key to getting through this.  Caregivers and family members also need care and it's important to think about your own needs as you are walking this road.

We do not care for our son day after day.  We see him as many times a week as we can; sometimes it is daily, sometimes just a couple of days a week.  We aren't up 24 hours a day.  We chose an independent life for our son a long time ago.  Although there is an amount of guilt in allowing someone else to care for him, we also know that he has a life that gives him the most autonomy possible.

Nevertheless, we feel the burden of making decisions for Lacy and the pain of visiting and watching the decline.  Sometimes it seems incremental, sometimes we can see a big change.  Anxiety seems to be just behind us, often catching up to us.

Years ago, we learned a valuable lesson as a family;  narrowing…

Support Group: Living life to the fullest

Last night was the second support group meeting we attended.  There were a couple of familiar faces and one new friend.  We talked a lot about Social Security, insurance, employment, and the long journey that is HD.
Everyone is trying to make the best of life, and that is what living is all about.  Staying independent, working as long as possible, and participating in life is the goal of everyone in our group, whether they be caregivers or those who have to live with the effects of HD on their bodies and minds.  
For some people that goal is best accomplished by working whatever temporary jobs become available;  for others, retirement and travel.  Planning for the future is foremost in everyone's mind.  What happens when the person with HD can no longer be cared for at home?  What about disability and medical insurance?
Lacy has lost interest in so many things that he once enjoyed.  For him, this loss of interest is not depression, but a kind of agnosia - those things no longer ex…