The complexities of living alone with Huntington’s disease
A columnist shares some observations about her family members
Huntington’s disease presents a complex range of behavioral, cognitive, physical, and psychological symptoms. It poses many challenges to families, friends, caregivers, and people who are living alone with this condition.
Huntington’s has taken the lives of my dad, grandad, and great-grandmother. I tested negative for the disease in the summer of 2023. People of all the generations in my family with Huntington’s have lived alone with the condition.
Cognitive symptoms of Huntington’s can precede motor symptoms by several years, so early difficulties for people living alone with the disease can go undetected for some time. Mail, for example, might remain unopened and bills unpaid as apathy takes hold and the person struggles to plan and organize daily tasks. Loss of employment can send finances into a downward spiral.
When an occupational therapist observed my dad during his morning routine, she found he was drinking his mouthwash. I saw him dip an electrical plug in a sink full of water and then plug it straight into the wall!
When the troubles began
The difficulties started with Dad being unable to lock or unlock his front door; he often forgot to do it. He once left the door wide open when he left the house.
Obsessive-compulsive behaviors have caused some of my family members to throw away much-needed items of clothing and other personal belongings, with no thought about sentimental or monetary value.
Another behavior that affected family members was filling their kitchen sink with water and insisting that it remain at a specific level. I dread to think about how much bacteria was harbored in the water, which could’ve been transferred to the dishes that were washed in it. In general, the cleanliness and hygiene of my family members’ homes deteriorated along with their condition.
Significant damage can also be done to home fixtures because of the effect Huntington’s disease has on the body. It can be difficult for people who have it to control the amount of force they apply to objects, or to control their body in general, because of chorea (involuntary movements) and lack of core strength. In my family’s experiences, windows, doors, and toilet seats were easily damaged, which can be expensive for landlords to fix in rental properties.
As the condition progresses, falls can become more common as well, which can be dangerous when living alone. We had a Lifeline alarm for my dad, with a pendant he could wear around his neck and press in case of an emergency.
Eventually, dysphagia, or difficulty swallowing, became so dangerous for Dad that aspiration could’ve happened simply by drinking water. At that point, 24-hour care was needed.
Living alone with Huntington’s disease is difficult to navigate safely, which causes caregivers much stress and anguish. Support is needed in the form of social workers, care advisers, and occupational therapists to keep those diagnosed with this condition as independent and secure as possible, for as long as possible.
Note: Huntington’s Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Huntington’s Disease News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Huntington’s disease.
About the Author
Edie Morris, Oklahoma USA
Becky, I’ve found your writings very helpful. Your perspective on HD and your sharing of your family’s history has been extremely interesting for me.
I’m the daughter of a man who had no idea that HD was in his family until he was diagnosed at age 70. He had 42 CAG repeats. His mother had died at age 39, so I don’t know if she had been in the early stages of it. Although I don’t know for sure, I think her father may have had late onset HD. There seems to have been a number of cousins that may have had it. A number had died from suicide at younger ages, but I had attributed it to depression, as I have chronic depression.
My dad and his 4 sisters were never encouraged to keep in touch with their mother’s family. In trying to trace their history through Ancestry, I found that my Great-Grandpa Davis died in 1957 (I was born in 1956). He was said to have had a “long illness” and lived with one of his children in his later years. I think his brother had HD and had lived with him and Great GrandMa Davis much of his life.
I have opted not to be tested. I am an only child, and, although I was married for almost 9 years, I had no children. I felt, and feel, that I could live with not knowing I was gene-positive more easily than knowing I would develop it. I am now aged 68 and am divorced. Although Dad’s HD seemed to have been late onset (at age 70), i think he showed some early movement symptoms around age 55. He died at age 73. I am hopeful that maybe I’m gene negative, since I don’t think I have developed any movement symptoms so far.
Again, thanks for sharing your experiences with all of us. I’m glad you are blessed with being gene-negative for such an “evil” disease.
Linda C
Insightful
Compassionate
Honest and
A great peace for
Fundraising and awareness
Send to magazines !
Edie Morris
Linda C, Thank you for reading my story and for your comments.
Do you have any suggestions as to which magazines might be appropriate to approach?
Rebecca Field
Dear Linda and Edie, thank you so much for your comments and for reading. I am glad the column has been useful and hope it unites people within the HD community. Praying you continue to keep well, Edie.