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 exist for him.  He doesn't miss them because they don't enter his mind.   He is happy, and enjoys seeing us for short visits here and there.  We don't ask too many questions because that makes him too confused.  He loves the people who care for him.  Yesterday, as I sat with him in the group home cafeteria, I was touched to see all the staff and residents' obvious care and love for Lacy.  They teased him about his new shoes ("Don't you go running off now!") and smiled at his bright grin.   

It makes us happy to meet and talk with people who are struggling like we are.  The positivity in our group is encouraging.  The smiles and laughter we share are priceless.  

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

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

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