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

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

Grief and Hope

When we visited with our pastor in preparation for Lacy's service, he reminded us of the scripture in I Thessalonians 4:13   But we do not want you to be uninformed, brothers and sisters, about those who have died, so that you may not grieve as others do who have no hope ... Knowing where Lacy is, that he is safe and finally free of all his burdens, does not assuage the pain of loss.  We are grieving - sometimes with tears, sometimes with a swift intake of breath - and the grief is oppressive.  I don't want anyone to have the idea that our faith that gives us the hope of eternal life somehow makes us immune to grief.  On the contrary, we are able to express our pain because we know where our son is right now.  We are mourning the loss of his presence in our lives, and the loss of daily contact with the son we loved with all our hearts.   There are no words to express this grief.  My body has seemed to shut down, as though I have been under anesthesia.  I cannot keep a tho
Read more

Our Sweet Beloved Son

Image
Lacy Alan Goff passed away into the arms of Jesus early in the morning of May 28, 2016.  We were called to the nursing home about 1:30 am. God has shown His mercy.  Lacy was still himself most of the time. He was mostly happy and always had a smile on his face.  We do not have to watch the slow decline of HD rob him of what was left of himself. We have been privileged to be Lacy's parents for 35 years.  He has been a joy in our lives and hearts.  We had such hard times, but Lacy never failed to try his hardest.  He was a worshipper of the Lord Jesus and a man of faith.  He slipped into heaven in his sleep.  What a joyous homecoming party in heaven! "Soady Pops" for everyone!! Now it is left to us to plan our goodbye and to keep walking our own road of faith knowing that our sweet beloved son is in the arms of our Lord and Savior. My last words to him yesterday afternoon were "I love you."  He smiled at me.  I hugged him.  On the way home, a scripture sud
Read more