Showing posts from January, 2012


When I was newly married, my dad would always end any conversation with this question: "Are you happy?" Over the years I was alternately appreciative of or irritated by the question. Of course I was happy. At least most of the time.

Last week an essay in the paper started me thinking about happiness. "The Dark Side of Happiness" was a title that intrigued both Kenny and I. To sum up, the essayist - Gareth Cook - indicated that "happy" is not always the way we want to be. In fact, to be a little bit sad makes you more realistic in your view of life, and of the challenges that we all face throughout our human existence.

When I think of the word "happy" I immediately have a mental picture of one of the nuns in the comedy "Sister Act." If you've seen it, you will remember that she was the perpetually giddy one: "My mother used to say, 'That girl is pure sunshine. She'll either grow up to be a nun, or a stewardes…

Quiet time to think

Right now, our family has settled into a routine.  We have our new normal, and we are adapting to this surprisingly well, I think.  Alan's mood has stabilized.  He still has occasional outbursts, and fits of paranoia, but we and his caregivers have learned to let him rant and wait it out.  His mood changes on a dime, and he is happy and compliant again.

Because we are enjoying this quiet time, I've had a lot of opportunities to think about the information that is out there on Huntington's Disease.  There are some great articles that can be downloaded from the HDSA website, and some good books ranging from a physician's guide to management of the disease to a small book with just the facts about Huntington's.

What I notice is that so many of the books focus on just one point of view - perhaps the physicians, perhaps the caregiver or the person who has been recently diagnosed.  Articles or webinars for caregivers are available on the website.  However, there is no bo…


After my last post, I was reminded by a friend of a little book we read years ago - Hind's Feet on High Places by Hannah Hurnard.  It is written as an allegory, and I remembered it as being very meaningful to me at the time I read it (I think I was in my early 20's).  We happened to have a copy of the book, and I found it on the shelf in the front room.  My friend had reminded me that the main character in the book, Much Afraid, had as her companions in her journey Sorrow and Suffering.

Turning to the preface, I read these words:
"The lessons of accepting and triumphing over evil, of becoming acquainted with grief, and pain, and ultimately, of finding them transformed into something incomparably precious; of learning through constant glad surrender to know the Lord of Love himself in a new way and to experience unbroken union with him - these are the lessons of the allegory in this book." ~Hannah Hurnard, 1975

Over my lifetime, I have read many allegories of the tran…

Day by Day

Alan is doing better since his hospitalization.  His outbursts are fewer, and are less "pitched" than before his med changes.  The staff assigned to him at his group home are doing well with him.  They have to pick their battles, as we all do, and are trying to keep him to a schedule.

We took Alan to his neurology appointment this week.  Usually when someone asks Alan how he is doing, he just says "fine," but on this day he answered, "My knees are weak, and I have to lean over and hold on to things."

After examination, Alan's doctor recommended physical therapy, as Alan is perilously close to falling.  While we don't know if Alan will be able to follow a therapists directions, or will even want to cooperate, we will arrange for a consultation.

I can deal with the nuts and bolts of being an advocate and sometimes caregiver for my son, but I find it hard to maintain the focus I need when I hear his say that he is having trouble walking.  It is so…

New Year, New Way of Thinking.

The new year started today, and with it the predictions and anticipation of what will happen this year.  I find that anticipating is somewhat problematic for my family.  Alan is much better beginning the new year than he was at Thanksgiving, but still having daily outbursts and fits of paranoia.  As one of the residential managers at Alan's group home said last week, "This is our new normal."

I found myself today struggling with the desire to be upbeat and excited about the new year, but not able to conjure up any such feelings.   Yes, Alan is out of the hospital and is better, but the specter of what is still there, still wreaking havoc in his brain, can't be dispelled.  I feel a heaviness, a sober understanding of what we are facing.  I can't breathe that sigh of relief that goes with a loved one leaving the hospital to go home.

My choice is to strive for that feeling of well-being - which I think is impossible to achieve right now - or to realize that this se…