Advance Directive

This week there was a very informative and emotional segment on a news program we frequently watch at our house.  The program detailed the steps in leading patients through decisions on what types of interventions they do or do not want.  For those who have made the decision not to continue with treatment when their disease is at a stage where treatment is of no benefit,  an Advance Directive is a gift to families.  

Eleven years ago, I sat with my parents as they went through the same type of conversation.  It was heart-wrenching then; an odd mix of triumph and resignation.  Kenny and I watched the same type of conversation unfold on our television set this week.  Of course, we had an emotional discussion ourselves after viewing the segment.  We will some day - sooner rather than later - have to have this same kind of conversation, but it will be about our son's wishes, and what we think will be best for him.  

Our son is past the point where he can understand this disease and its consequences.  But we do know that he asks for relief from pain when he needs it, and that he can let us or his caregivers know when he is in distress.   A couple of months ago, Lacy had a fever - due to sinus infection - and was so weakened that he could not walk to the car.  He had to use a wheelchair.  Even the slightest illness knocks him to his knees.    If he developed something more serious, like pneumonia (common in HD), who knows what would happen?

We talk in generalities and nebulous "what ifs".  Years from now, how will we know when to say "enough?"  We trust that God will give us wisdom and courage on that day.  

One Advance Directive that Lacy has given us is this:  His fondest wish always has been to see Jesus face to face.  He had a dream once in which his body was covered with hurts and "Jesus touched all my hurts and made them well."   

When we reach the place in which no treatment will benefit him, no intervention will save his life; when heroic measures would increase suffering and not ease it, why would we deny Lacy the one thing he has always wanted?   To know what he wants without question - that is a gift.  




Comments

Post a Comment

Popular posts from this blog

Suddenly...It's Spring

Spring comes without warning, it seems.  Suddenly everything is green, flowers are blooming, and the world is waking up.  New life is everywhere.  Robins are hopping around our backyard, some are building nests in nearby trees and shrubs.  There is an expectancy in the air. The cycle of grief is a recursive one.  Back and forth it seems to go for months on end.  Great sadness, numbness, depression, exhaustion; until one day a memory comes and it is not painful but poignant.  Rather than a tear falling, a smile comes and with it a hint of joy and a lightness of spirit. Ten months have passed since we lost our Lacy.  We made it through some big firsts; birthday, Father's Day, Thanksgiving, Christmas.  The anniversary date of his home-going is not far away. In these ten months, Kenny and I have begun to find our way into new patterns and traditions. Sunday afternoons have become a time for visiting friends, enjoying walks, or just relaxing.  We spent Christmas 2016 on the beach
Read more

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
Read more

Countdown

Four weeks from today will be two years since we lost Lacy. I keep getting reminders on my Facebook feed of the last few weeks of Lacy's life.  The last year, I took a picture of him every week.  I wanted to make sure I could remember him, and the good - and bad - times we had together. I feel a sense of dread about May 28.  I am thankful that it falls on Memorial Day, so we will not have to go to work.  I am also thankful that we took every opportunity to spend time with him.  The last time was 5pm on May 27, 2016.  Nine hours later, he was gone. As I drove away from the nursing home that evening, a scripture popped into my head:  ...that I may know Him and the power of His resurrection... (Philippians 3:10) That power has sustained us for nearly two years.
Read more