John: “It can feel like I’m drowning because I can’t see a way forward”

In this second and final piece from John, he focuses on his role as a carer for his wife Lisa. He tells us about the challenges he faces each day, including how feelings of fear, self-doubt and loss affect his physical and mental wellbeing. Read part one.

A close up picture of a couple holding hands“A tiny bit of what was Lisa is lost every day as brain cells die. Occasionally she’ll say something funny or insightful which evokes memories of how she used to be. I’m, essentially, mourning someone before they are dead.

“It’s horrible. I’ve been, at times, exasperated, angry, upset and fearful, often all in the same day. I constantly think of my own worth – am I doing the best I can? Am I doing things correctly?

“I’ve had illnesses on several occasions and become run down. I comfort eat all the wrong foods because at the time it helps, but only for that moment. I never consider going to the hospital when I’m ill because there’s no one here for Lisa while I’m away. Social services, care providers and charities are of limited help if you have chest pains at 3am on a Sunday. I feel I have to beg and plead for help from care organisations.

“I can’t relax even when I get respite; the fear is always there that something will happen when I’m away. There’s also guilt at taking some time out for me. And I never sleep deeply, I’m on constant alert in case Lisa needs help through the night. Always being tired can make me irritable.

“When things go wrong, for example Lisa may have a toilet accident, a choking incident or a small series of little dramas, it can feel like I’m drowning because I’m not able to see a way forward.

“Knowing that others could be suffering as badly, or worse, isn’t a comfort in those circumstances. I get annoyed, unfairly, at other carers who have a bigger support network, or those who are later in life when their partner’s Huntington’s disease kicks in. I feel they’ve had a major part of their life untroubled by the disease, at least in their own lives.

“That said, there is a counter-side although sometimes it’s hard to enjoy those times as they can be fleeting. When Lisa says something funny or she hears something that makes her laugh with joy, temporarily relieving the ‘Huntington’s face’ that is so common amongst people with the disease.

“Or when she is sleeping and I see how peaceful and calm she looks. I remember her genuinely good nature and stories about her family, especially her dad, and the fun we had with our dog. There are many of these good times to remember and they can help to balance things out, at least to a degree.”

*Names have been changed. We are grateful to John for sharing his experiences to raise awareness about Huntington’s disease and how it impacts people with the disease and those who care for them. Please visit our home page to find out more about the services we provide for families and carers whose lives are impacted by Huntington’s disease*

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