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
Last week I wrote about my experience attending the Illinois State Conference for Huntington’s Disease, the Huntington’s Disease memory quilt, and the Team Hope Walk for a Cure on May 17th, in which I and many of my firm members will be taking part. This week I want to share more about the specifics of this degenerative disease and some of the amazing people who live with it every day. Huntington’s Disease (HD) causes brain cell atrophy, which eventually destroys attention, memory, liver functions, and executive functions (such as organizing, prioritizing, controlling impulses, and monitoring self-awareness). The current model of HD treatment and intervention is a battle to try to delay the progress of the disease. There is no known cure. Most of the speakers at the conference were outstanding medical and neuropsychological experts, and I felt a little awkward speaking to the audience about the “elder care and disability journey” when the average age for the onset of HD is only 39. After symptoms appear, the disease trajectory is a long 18-year decline. HD may strike only 1 out of 10,000 persons, but it often affects 50% of the family members who are genetically vulnerable. Some of the speakers spoke about how they initially tried to deny their symptoms—trying to hide their involuntarily moving legs. They spoke of the loss of their jobs, their friends, and often other family members. Families of those with HD symptoms live with the terror of seeing their loved ones suffer, and their own fear that they too will get the disease. For others, the disease has given them unique strength and perspective; one person boldly announced, “I am not dying of HD. I am living with HD!” Everyone agreed that persons with HD must exercise both the body and the brain to keep active and maintain a better quality of life. In fact, one presenter praised the Nintendo Wii video game for keeping their adult son mentally and physically fit. These same parents have found it fun and helpful to join their son by challenging him to various Wii Fit competitions. They credit this video game activity with maintaining their son’s mental, motor, and physical health. From one doctor visit to another the doctor has stated that their son’s decline has actually stopped! The mom enthusiastically exclaimed, “What better way to spend time with your HD-affected loved one than laughing, playing, and challenging each other with Wii Fit. You just can’t be too old to play the Wii Fit game. We wish that we had bought stock in Nintendo!” The good news is that there is hope for a cure in this generation. Dr. Richard Morimoto, Ph.D., of the Northwestern University, a National HDSA Coalition for the Cure scientist, reported in his keynote address entitled “From Bench to Bedside: New Discoveries and Therapeutic Candidates for Huntington’s Disease” that due to the identification of the gene responsible for the mutation and the ongoing investment of pharmaceutical companies into research and development, there is hope for a cure in this generation. Let us pray with every member of a Huntington’s Disease family that this hope will be realized.
Although Huntington’s Disease is a relatively rare disease that affects about 1 in 10,000 persons, the families that suffer from this killer often sustain a 50% casualty rate. Here at Law Elder Law, we have decided to help work toward a cure.