Cognitive symptoms of Huntington’s can be tough to process
A caregiver describes feeling helpless when faced with unmanageable behavior
Psychosis causes a person to lose a degree of contact with reality. According to the National Health Service, three main symptoms are linked to a psychotic episode: hallucinations, delusions, and confused and disturbed thoughts.
As a 2019 Huntington’s Disease News article noted, “Psychosis is defined as experiencing hallucinations — things that are not really happening — and delusions, or believing things that are demonstrably untrue. Psychiatric symptoms are estimated to affect up to 11% of people with Huntington’s.”
Alcohol and drug abuse can also trigger psychosis, and people with psychosis have higher-than-average rates of self-harm and suicide.
I’ve lost my dad, grandfather, and great-grandmother to Huntington’s disease. I tested negative for the disease in the summer of 2023. My mother and I have seen signs of psychosis in each generation of our family that has been affected by Huntington’s.
Feelings of helplessness
Mum stopped taking us to visit Grandad because his behavior became too frightening for us. He was aggressive, angry, argumentative, and irritable. He would wash lettuce in soapy water, and one day, he chased my mum and dad down the street in a rage, dressed only in his underpants. My dad told me that when he was a child, his family went on a day outing and my grandfather started to drive on the opposite side of the road toward a lorry. He swerved back to the correct side of the road at the last minute, narrowly avoiding a collision.
My dad’s symptoms were less severe, but still present. There was less anger, but he did have periods of obsessive-compulsive disorder and perseveration (when a person involuntarily repeats a thought or behavior). He was obsessive with recording TV programs he liked and turning off the lights. He would get an idea in his head and couldn’t let it go. He once rang the telephone operator to try to order a DVD he wanted.
While Dad withdrew socially, he didn’t do so with his family. During the prodromal phase of the disease, also known as the preclinical stage, he couldn’t cope with working and had difficulty concentrating and thinking clearly. I remember him telling me that it was like having a fog inside his brain. He had a tendency to lose his temper more easily than before, although it only happened a few times. He began to neglect self-care and didn’t eat as well as he once had. He shaved and got his hair cut less often. He also had sleep issues and seemed less empathetic and more selfish.
As a caregiver, I find these symptoms and behaviors extremely difficult to manage. I’ve felt very alone and helpless in knowing what to do or how to best manage situations that arise. That’s where a regional care adviser at the Huntington’s Disease Association here in the U.K. has been a fantastic support.
At times I’ve felt angry about what the disease robs from people. The anxiety and stress of dealing with everyday difficulties that arise from Huntington’s takes its toll on patients, their family members, and friends. I frequently find myself feeling frustrated that I can’t always fix things. Families are often still grieving the loss of a family member while caring for others who are symptomatic.
Some days it can leave you feeling sad, heartbroken, and hopeless.
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
David McDonagh
My brother Stephen passed from HD 20 years ago. He had a lot of hallucinations and hearing voices which he would respond to. I remember once when he got really angry with me because he opened a briefcase and all the papers flew out of the case and around the room and I couldn’t see anything at all obviously…he really did get upset and told me I needed to see a doctor. He would sleep in mums bedroom on the floor at the foot of her bed and talk to people all night mostly people who wanted to hurt him. My sister who passed from HD never had any of those symptoms.
Becky Field
Dear David, it is interesting how even in the same family HD symptoms can vary. The hallucinations sound very scary, both for the sufferer and the people around them. Thanks so much for reading and commenting.
Nancy Hansen
Dear Becky,
I have been taking care of my husband who has HD at home for 5 1/2 years and I often feel helpless. You may feel alone but you are not alone. I love your articles because they always speak to my experience. Many, many thanks.
Becky Field
Dear Nancy, thank you so much for reading and your kind words, as ever. You are not alone either. Sending love your way. Thinking of you.
Teresa Butler
My partner has Huntington's and he describes the fog inside his brain. It has taken his dad, his brother and his daughter who is 33 has bad symptoms now and has 4 children and it has been a struggle to get help, but now they have help. HIs other son also has the disease but told it will be late onset. I find it very hard to cope with but talking with others help but I am very sad and feel helpless.
Becky Field
Dear Teresa, it is hard but talking to others in the HD community really helps me. The fog in the brain is so interesting, particularly as your partner and my dad both made that comment and it looks like a white fog on an MRI scan, I believe. Sending much love and support to you.