What is your name? Bernadette
Where are you from? Ireland
Who are you a caregiver for? My eldest child, who is 25
How long have you been a caregiver for them? I have been his caregiver his whole life.
When did you first learn of Huntington's Disease? When I was newly pregnant with him, his paternal grandmother was diagnosed with HD back in 1995.
What's it like being a caregiver for someone with HD? It is soul-destroying caring for my truly gifted son, who had huge potential and aspirations only to be robbed of them at a young age by HD.
What do you use for your support system? (online support group) I am involved with the Irish HD Association. Patricia, who works there, is amazing.
What sort of resources have you found in your local community? The local Mental Health team is helping me. Disability Services also help, but I have had a huge battle to get the help we need, and it is still a work in progress.
Do you work a job separate from being a caregiver? No, I gave up work when my eldest was 15 months old and never went back due to continuous care of my son.
What is your relationship with your loved one like? It was a very volatile relationship for years because of his behavior throughout his teens and after. In the last 18 months, we have gotten on extremely well and are very close now. His siblings now, too, have bonded with him as his diagnosis of JHD has explained so much.
What symptoms of HD that your loved one experiences do you find the most challenging? His speech and swallow. This upsets him as speaking is very hard for him, and he is fully aware of what is happening to him. He used to be a great public speaker. He was a stand-up comic in London.
What are some things you enjoy doing with your loved one? Sitting with him, touching his arm or hand, and talking to him quietly about everything. He understands everything I say.
What sort of precautions do you take to keep your loved one safe? (wheelchair, cut food, puree food) I pureè his food; I give him thickened fluids, rice puddings, mousses, custard, honeycomb chocolate, and crisps that melt in his mouth.
Do you have any other family members at risk for HD or symptomatic? I have four other children at risk, and they are fine, thankfully.
How has HD changed your life? It has been a dark cloud over me for 27 years. Every day I research. Every day I prayed for my family to be ok, but my son isn't, and I'm very angry with God.
What is something you wish people understood about HD? That it's a disease like all the other thousands of diseases out there, and stigma shouldn't exist around it. It is a one-gene problem and, therefore, quite probably one of the first diseases to be cured as the target is known.
What do you do/find that helps you cope with caregiving for someone with HD? What helps me is that since Christmas, I have visited him in the hospital where he is currently until residential care is sorted. I visit very often, and it's heartbreaking, but it's far more appropriate for Conor the care he gets now than with me because it was too hard for me entirely. I feed him, groom him and talk very positively to him, and it helps him a lot. I give him a 'one sip at a time' bottle. He gets proper showers now also, and it's great.
How would you describe HD? It's a cruel, merciless monster that leaves nothing of a person unharmed. It is a curse to humanity for too long. This monster will be killed, no doubt about it.
What is something you would like your loved one to know? That I'd swap with him in a second. That there is hope for him and to keep using what he has and fight. Miracles also happen.
If you could give any advice to a new caregiver, what would you tell them? To take time out to cry and to rest and to treat yourself as you are the linchpin. Keep positive and engage in the HD fight for a cure if you can. Stay calm. Your family needs you.
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