I recently heard a moving story from a widow who had served as her husband’s primary caregiver for sixteen years.  She spoke with both passion and pain, describing her caregiving sojourn as “the loneliest time of my life.”  For this reason, she wanted to speak out and be an encouragement to others who might be on the same road. Her husband had been diagnosed with Huntington’s Disease, a long-term illness that strikes at an average age of 39.  To paraphrase her words, “My husband had the diagnosis, but the disease took him away from me.  I no longer had a lover, a soul mate, someone who could really share with me.  Our days as a couple were at an end.”  During the time of her husband’s increasing illness, he was not able to hold her, kiss her, or care for her for at least eleven of the sixteen years of his disease. She shared that during his illness, she had to sacrifice her own feelings for the benefit of her spouse.  An area of greatest hurt was the abandonment of her husband by his own extended family.  Her burden could have been lighter if family and friends had stayed more involved.  She related that when she called her husband’s brothers and reminded them of how important it was to her husband to be able to see them from time to time, they responded with, “I just can’t stand to see him that way.”  “I was a widow with a living husband,” she stated with sadness. It seems to me that we could all do a much better job in helping others carry the load of long term illness.  We need to be more aware of what family members are going through during what may well be the loneliest and most difficult time of their lives.  We need to come alongside them and provide sympathy and support. On a more positive note, I learned of another man who has been diagnosed with Huntington’s Disease and whose male buddies have rallied around him.  They have intentionally gone out of their way to work together to take this man out of the house and to sporting events with them.  They have specifically set up time to talk with his wife to make sure they understand his care needs.  They work together to make it possible for him to go on their annual fishing trip.  These men are an extraordinary example of what it means to truly be a friend.  I hope that each one of us would choose to follow this model of true friendship if someone we know and love develops a long term illness. **The following links provide more information about Huntington’s disease support groups, or support groups and services for caregivers: Huntington’s Disease Society of America Illinoise Support Groups Today’s Caregiver The Family Caregiver Alliance