20 Questions with Help 4 HD - Vicki Owen

1. What is your name? Vicki Owen

2. Where are you from? Plant City, FL

3. Who were you a caregiver for? I was a caregiver for my husband, Tom.

4. How long were you a caregiver for him? I was his caregiver from 2010 until 2019 when he passed away.

5. When did you first learn of Huntington's Disease? When he was diagnosed in 2010. We didn't know his father had it.

6. What was it like being a caregiver for someone with HD? It was scary. We didn't know what to expect, so we had to learn how to cope with it together.

7. What did you use for your support system? We didn't really have one. Our family is in Ohio. All we had was the doctor, clinical coordinator, and social worker at first...most of our friends decided we were too much trouble to make plans with, so it was basically us. Then we met so many friends from Help4HD who really helped us that it didn't matter.

8. Did you work a job separate from being a caregiver? Only the first year he was diagnosed, then I retired.

9. What was your relationship with your loved one like? It was awesome. Tom was the ideal patient.....very compliant in all ways. He was a happy man. I never had any issues with him. He was and is the love of my life.

10. What symptoms of HD that your loved one experiences did you find most challenging? I guess it was probably the swallowing issues. I had to be very careful to make sure he didn't choke on food or liquids. Also, his asking the same questions over and over every day...I found that frustrating even though I knew he couldn't remember the answer.

11. What are some things you enjoyed doing with your loved one? We loved going for long drives and finding places to picnic. We also loved going to amusement parks in the early stages. Later we hosted events to raise money for Help4HD, such as Cocktails for a Cure, softball tournaments and going to law enforcement education conferences for Help4HD.

12. What sort of precautions did you take to keep your loved one safe? I had a ramp put onto our home, so he didn't have to navigate steps. I also made sure he had a special straw to drink from (it only allowed a small amount to go through at a time); I pureed food he couldn't eat easily and eventually got him a walker, wheelchair, and hospital bed.

13. Do you have any other family members at risk for HD or symptomatic? Tom had two children at risk. His son tested negative (he has four children who are now not at risk). His daughter chooses not to know and is not married or have children.

14. How has HD changed your life? It changed our plans for retirement for sure. We traveled as much as we could while he was able. It didn't really change much else since his symptoms were mild until the last two years.

15. What is something you wish people understood about HD? That they cannot control their actions, speech, or gait. I wish they would give them time to answer questions.

16. What did you do/find that helped you cope with caregiving for someone with HD? Taking time for myself. I had a county caregiver come in for 10 hours a week, so I could go run errands or get some quiet time for myself. I also tried to sleep when he slept so I wouldn't lose patience with him.

17. What do you do to advocate for the HD/JHD community? I host events locally and am the Director of Law Enforcement and First Responders for Help4HD. I attend local CIT training sessions to help our officers understand what HD is. I also attend State Police Chief Conferences in the hopes they will share with their officers what we educate them about. Pamphlets and flash drives are given to each of them to share with their training officers.

18. How would you describe HD? I think that it is one of the most devastating diseases to affect a whole family. The person with HD, the caregiver, and the children at risk are all affected by it. Knowing there is no cure is probably the hardest thing to swallow. It's like planning a death a year in advance, and you can mourn through the whole experience.

19. What is something you would like your loved one to know? No matter what, I will always love and be there for him. I will care for him to the best of my ability.

20. If you could give any advice to a new caregiver, what would you tell them? Tell your loved ones every day you love them. Have patience and remind yourself that they will change right before your eyes. Know that they can't help themselves and that they are trying their best. Make memories as long as possible because someday they won't be there to make memories with. Now with smartphones, you can make videos for the kids and yourself. You'll be glad you did. TAKE TIME FOR YOURSELF!!! Let the children be involved as much as they can. When it's time to quit the job, stop driving, etc., let the doctor be the one to talk to them about it. TAKE TIME FOR YOURSELF!!! I can't stress that enough. Your mental and physical health will be better for it.