John: My wife is now in late stages of Huntington’s after losing both her father and sister to the disease

John’s wife Lisa is in the later stages of Huntington’s disease. Together for more than 25 years, John has supported Lisa through the loss of her father and her sister and is now her full-time carer while also working from home. Keen to raise awareness about the realities of Huntington’s disease and how it impacts individuals, families and relationships, John tells us – in his own words – about their life together over the years. In a second article John describes his experiences of being a full-time carer and how it impacts his physical and mental wellbeing.

“Lisa and I got together in 1996. Lisa’s dad had just gone to stay in a nursing home as he was getting very ill due to Huntington’s disease. He could barely walk, his physical condition was deteriorating and his speech was difficult to understand. He was a lovely man and a bit of a joker but would get angry due to frustration with his condition. Lisa’s sister also tested positive for the Huntington’s gene around this time.

“Lisa herself had a degenerative eye condition called Stargaadt’s Disease, which gave her some problems back then but far more in later years.

“In 1999 we moved into our first home then we moved back to my home town a year later. By then Lisa’s sister had a little boy with her then-partner.

“Then, in late 2001, Lisa tested positive for the Huntington’s gene too. At the time we shrugged it off, not with insouciance but because Lisa’s eye condition was more pressing. Huntington’s symptoms hadn’t appeared and she had passed her training to be a guide dog owner so there was much more going on. And Lisa’s dad was extremely ill, he couldn’t speak and was very thin and frail.

“He passed away in January 2002, and it was around this time that Lisa’s sister was starting to show the effects of the illness.

“Lisa and I got married in 2004. By then Lisa had become estranged from her sister who always seemed to be angry, aggressive and confrontational. Our calls weren’t answered and we didn’t hear from her for a long while. She also cut herself off from her mum.

“We found out later that she had been a victim of domestic abuse and as the Huntington’s disease had progressed was no longer seeing her son. She was suffering from psychotic events and was taken into a nursing home in 2007. Ironically it was the very same nursing home where her dad died, in fact she was in the next room.

“That same year Lisa started to have anger problems and depression, which caused some real problems for us. In 2010, her guide dog had to be retired due to age, around the same time that Lisa started having small physical problems with her walking and coordination. The dog died in 2012, by which time Lisa’s symptoms were slowly amplifying, although the anger had stopped.

“At Christmas 2015, we visited her sister in the home. She was so ill that Lisa became very upset and her walking became worse from then. I decided it was too upsetting for Lisa to see her sister so I made the difficult decision to visit by myself. Those last few years for her sister were an existence, and a pretty miserable one at that. When she passed away in late 2017, Lisa was not physically able to attend the funeral.

“As of now, Lisa is a happy enough person but her eye condition means she can only make out light and shapes, while the Huntington’s disease is running its course and she is in the later stages.”

*Names have been changed. Click here to read about John’s experiences caring for Lisa and how that impacts his physical and mental wellbeing*