Killed by life

The idea of grieving the living isn’t new to me.  A grief counselor opened it up at an autism conference I attended years ago.  There are crossovers between disability and death – dreams are lost, so are familiar comforts and joys.

Today I bumped into a good article on this topic, from the American Academy of Bereavement.  In a 2015 piece entitled Unconventional Grief: Grieving Someone Alive, AAB shares good insight,

jesus-weptThis form of grief, just like grieving someone who is deceased, does not change the level of attachment to the person. Simply, this person is no longer acting how they were before and have had a dramatic shift in personality… Unlike when someone dies, you are unlikely to experience positive emotions while grieving someone alive. When someone passes, you are surrounded by the comfort of their loved ones and are often able to look at the joy of their life. This rarely happens with unconventional or ambiguous grief. Just like when someone dies, you are likely to be overcome with sadness. However, the reminder of your sadness is constant…

The article focuses on sudden change in an adult, such as drug addiction or the onset of mental illness.  For caregivers of children with developmental disabilities, the loss isn’t so much who the person used to be, but who you dreamed of them becoming.  There’s grief either way.

Read the whole thing.  There are some positive suggestions for the grieving caregiver, including this one which has been so true of living with our son’s autism,

Open yourself up to change. One of the hardest parts of grieving someone alive is that you are forced to accept a changed relationship that you do not want. It may be difficult for you to look on a loved one in a different life, but you may be able to experience a rewarding relationship with them in new ways than before. Focusing on finding joy in your new relationship will help keep your mental state positive rather than gloomy.

Finding joy in Joey-as-Joey, rather than as the Joey of our daydreams, has been an essential care giving tool and its own reward.

And Jesus opened his mouth and taught them, saying:  “Blessed are the poor in spirit, for theirs is the kingdom of heaven.  Blessed are those who mourn, for they shall be comforted.”  (Matthew 5:2-4)

 

2 thoughts on “Killed by life

  1. I find some kind of comfort in reading this post. When my mom started to go blind i remember watching the life just leave her eyes. now we see life just a bit different as she listens, from not seeing her other senses take over to see life in a new way.

    • Thank you and we are so glad that some comfort came your way by this post. Thank you most of all for caring for your mom and having the love, patience and adaptability to see life in this new way with her.

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