What is your name? My name is Lisa Buckham.
Where are you from? I am from Abbotsford, British Columbia, Canada. I'm 56. I was a caregiver for my Dad from his diagnosis in 2000 until he died in May of 2019. I handled all primary medical concerns at the end, with the support of my sister, who had become a nurse (she's 14 years younger). My Dad lived with my Mom, and she did handle the day-to-day tasks, but I had to handle all emergency situations, committals, med changes, appts, etc.
Who are you a caregiver for? I was a caregiver for my Dad in conjunction with my Mother.
How long have you been a caregiver for them? Dad was diagnosed in 2000 and died in 2019. So 19 years. The last 10 being pretty hands-on.
When did you first learn of Huntington's Disease? We learned of HD in 2000 when Dad was clinically diagnosed after a knee replacement because of the movement. We then found out that his sisters in Ireland and England had had it, but the family had not disclosed this information. We have concurred that it came from my grandfather's side of the family. I have seven first cousins that are gene-positive and also my brother, who is now symptomatic. He is 50. I also have a second cousin gene positive.
What's it like being a caregiver for someone with HD? Being a caregiver at times can resemble a war zone. It can be traumatic. I had to have my Dad committed twice to get on meds the first time and then for a med change. In Canada, they do this in conjunction with a geriatric/psychiatric assessment team by police escort. It was awful.
What do you use for your support system? I was going to an in-person support group for a bit, and after a while, it just felt too much to be dealing with it all day, then updating my sibs and then the support group.
What sort of resources have you found in your local community? Resources were non-existent. My Dad lived in a very remote community. The only two with HD were Dad and his nephew. The closest resource was the UBC center in Vancouver, and we could only access support that way by phone. They did help one time when we needed them to talk to the psychiatrist about a med change of his anti-psychotics.
Do you work a job separate from being a caregiver? When I was helping with my Dad I had a full-time job, and my kids were 6, 11, and 13 when I found out. I was tested in 2002 and don't carry the gene.
What is your relationship with your loved one like? My Dad passed in 2019, and now I've started the process of helping support my sister-in-law and her family with my brother, who tested positive in 2005.
What symptoms of HD that your loved one experiences do you find the most challenging? The most difficult symptoms have been perseverating on issues both with my Dad and brother and the anger that they would show. It was very painful to go through. My Dad also went through a couple of bouts of extreme OCD with having to touch things over and over.
What are some things you enjoy doing with your loved one? My Dad had a wicked dry sense of humor, so we just enjoyed talking together. We were both avid readers and would watch jeopardy together every night when I was home.
What sort of precautions do you take to keep your loved one safe? We struggled with safety equipment. Someone really needs to invent a better bed system. Dad couldn't use walking aids as they were dangerous. He didn’t use a wheelchair until he went into the hospital. My husband modified the stairs and bathrooms, and we removed all rugs and tables that would tip easily, etc.
Do you have any other family members at risk for HD or symptomatic? I have a brother who is positive and is now symptomatic. He was diagnosed in 2012. I also have seven first cousins symptomatic and a sister who hasn't been tested. She has one child. And my cousin's children (6) have yet to be tested. I also have a cousin in the "grey area" of CAG repeats and does not have symptoms. I tested negative in 2002.
How has HD changed your life? HD changed everything. It affected my younger sister, who is 14 years younger than me. My father wasn't sick when I was young but was unmedicated and very paranoid and reclusive when she was in her teens. My parents had no retirement. Dad always refused to test, and there was a lot of shame around it. I had already had my three kids by the time we found out HD was in the family. For my husband and me, it meant not waiting. Take the vacations now, spend time with the kids, make things special. When my birthday or Mother's Day comes up, my kids get frustrated. They ask what I want, and my response is always the same: spend time with me, take me to do something, make me dinner, talk to me; That's it. That is all that's important is the people we love.
What is something you wish people understood about HD? I wish there wasn't so much shame around it. My brother is now in the proof study, but I'm not supposed to know about it. He is very paranoid. I wish it was easier to support him and for him to ask for help. I don't want his teens suffering the same way my sister did. I wish doctors testing were more informed, especially in small communities. I wish there were better access to support systems for families.
What do you do/find that helps you cope with caregiving for someone with HD? Information helps me; I like to stay on top of the studies and the research. I've gone to some of the Canadian National conferences.
How would you describe HD? I would describe HD as relentless. Just as one finishes their journey, we have another start with symptoms. Sometimes it feels like a war zone. Having said that, we try to live out each day grateful for the days we do have.
What is something you would like your loved one to know? I'd want my loved ones to know that I'd do anything for them. We are struggling right now as my brother hasn't told his kids and he has just started to be symptomatic. The girls are in-vitro, so they don't carry the gene. I wish people would talk about HD like they would treat for any other disease.
If you could give any advice to a new caregiver, what would you tell them? (for example, ss, driving talking to children) For other caregivers: start the conversations early. Get paperwork in place. Wills, powers of attorney. A medical power of attorney. Last wishes, care of minor children, etc. Let the diagnosis be a part of the family story. It's a horrible shock to hear it at 15 instead of it being something you've always known.