I’m pleased to be taking part in this campaign and to have the chance to tell our family’s story. I’ve got two grown up daughters who both have Huntington’s disease. It was passed down through my late husband Tony’s side of the family, although it was only with hindsight that we could track it back.
My husband’s Mum was told she had dementia when she was in her early fifties, but we now think that must have been Huntington’s. Tony was misdiagnosed with Alzheimer’s himself back in 1996, and it wasn’t until four years later that he was properly diagnosed with Huntington’s after a specialist spotted the smallest movement in his shoulder during a consultation.
Our girls, who are twins, Jennifer and Yvonne, were 26 at the time. Tony really didn’t want to tell them, he was really worried about how it would impact them, but eventually I convinced him he had to. He was reluctant to tell anyone in the family but we got everyone together and told them what we knew. Of course, everybody was absolutely devastated. It was very, very hard.
The girls both made the decision to be tested and so they knew from fairly early on that they carried the gene. They both made the decision not to have families, which of course was very difficult for them, as they both adore children. They had to stop working quite early on, they both struggled particularly with depression in their twenties. It was very hard for a while as Tony’s symptoms became worse, and they could become very distressed with some of his behaviour. Particularly if I was out of the house, it wasn’t really working to have all four of us under one roof. Eventually we reached the point where the best thing for Tony was for him to go into a nursing home, where we had expert care for him. They were absolutely wonderful from the start, it was a lovely place, and the team were fantastic, and became like an extended family.
What I found particularly difficult with the girls was that their Huntington’s journeys have been different. Both have had, and are still having, different rates of progression and different symptoms. That is hard to watch, and it is hard to be the one making all the decisions when things are particularly hard. I’ve had to make really difficult decisions. Because my girls didn’t have access to proper psychiatric care we had some very difficult and distressing incidents with them self-harming, attempting suicide, and making attacks on me. I had to call the Garda to help me manage, and for their own safety, and that’s something that I don’t think I should ever have had to do. Better access to the right services is definitely needed.
Both my girls are now in Bloomfields, which is a fantastic place. It has of course been very hard through Covid, as I haven’t been able to visit as I normally would, and it has interrupted the settling in process for Yvonne. On the other hand, I do feel that Covid has given me the space and time to grieve for Tony, which is so important. Just because somebody has a hard time with an illness like Huntington’s it doesn’t mean that their loss isn’t felt just as much. We were together from the age of 19, and we had some lovely times. He was a wonderful man, such fun to be around and an utterly dedicated family man who did everything for his daughters. They were his world, he couldn’t do enough for them, from the moment they were born that’s the way he was. When I’ve had to make hard decisions about care for the
girls I do that for both of us, thinking about what he would want for them too, protecting them for us both.
I know it can sound like there has been no joy in our life as a family but that just isn’t true. Before Tony’s illness we had a lovely life, both as a couple and then as a family of four. And after it, the girls and I did more as a family than we might otherwise have done. We didn’t know how long we had together before things became hard, and so we packed an awful lot in. We had so many holidays! More than we would have done if Huntington’s hadn’t been there, and I have some wonderful memories from that time. It’s important to me that people know that there can be good times too.
I am pleased to be able to share our story. I think there is a lot of grief and sadness for people who live with this horrible disease, and we have the power to uplift each other through telling our stories and finding things in common. Perhaps we can all give each other strength through doing so. Strength to fight that bit harder for what we need for our families, to face another battle, or to stay positive ourselves, which can be so hard.
I do know that being part of community helps. Being part of the HDA ‘family’ in Ireland was a huge comfort and support to me. I got involved very early on after Tony’s diagnosis and I’m so pleased I did. I think as a carer people often forget to ask how you are, and you can just be the one absorbing all the shocks and the difficulties and the pain. Your own health and wellbeing can suffer so much. So, the ‘Family Matters’ campaign is a good chance to help people understand how Huntington’s affects the people who do the caring too.
Anna P, Dublin.