Quality of life.

Lacy is going through a rough patch.  HD is a thief and robber - it robs the personality, the body, and the mind.  Today Lacy yelled at me for the first time in a while.  He was angry.  I'm not sure why.  He just kept yelling, "You don't understand!"

Lacy's quality of life is most important to us.  We are working with the doctor and nurses at Shiloh to problem solve.  As Kenny and I have practiced letting go of worrying about things we can't change, we are better able to offer practical help and suggestions.  We went over on Monday night and helped get Lacy bathed and in bed.  I purchased some new clothes for our boy that are softer, looser, and breathe more so that he will be more comfortable.  

We are all taking it one day at a time.  Lacy can't sit up by himself, but he is in a special wheelchair and he is happy.  He sometimes wants to eat, sometimes not.  That's ok.  We might need to try medications to help him feel less stressed.  Also ok.  It's about quality of life - his comfort, his peace, and his safety.


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...
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

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