1. What is your name?
Hi, my name is Lara.
2. Where are you from?
I’m from Portugal.
3. Who are you a caregiver for?
I’m my mum's caregiver.
4. How long have you been a caregiver for them?
About 15 years after my parent's divorce, my mum stopped working, and she started to isolate herself. That’s when I started to help her.
5. When did you first learn of Huntington's Disease?
A few years later, in a neurology appointment.
6. What's it like being a caregiver for someone with HD?
In my opinion, in my experience, it’s not easy. First, because she’s my mum and she’s losing her abilities. Then, because she had/ has strong psychiatric symptoms, like thinking, we’re all against her or that we want to harm her.
But, with love, everything is easier.
7. What do you use for your support system? (online support group)
I’m a member of the Portuguese Association of Huntington’s Patients.
8. What sort of resources have you found in your local community?
My mother’s appointments are at the public hospital, and we have some support on the “Parish Day Center.” (I don’t know if we can translate that).
But I feel that there is a lack of knowledge and support for HD patients and families.
My support is the Portuguese Association.
9. Do you work a job separate from being a caregiver?
Yes, a part-time job.
10. What is your relationship with your loved one like?
We have a good relationship. But the years when we didn’t know what the disease was and when there were already many psychiatric symptoms came to mark our relationship, without a doubt.
11. What symptoms of HD that your loved one experiences do you find the most challenging?
As I mentioned, psychiatric symptoms. And, now, the difficulty in swallowing (when eating or drinking).
12. What are some things you enjoy doing with your loved one?
My mum doesn’t want to do anything. Either because she doesn’t want to give others work or because it’s too tiring for her. So, right now, I like to see her happiness when we can go somewhere or, simply, when I make her some food she likes.
13. What sort of precautions do you take to keep your loved one safe? (wheelchair, cut food, puree food)
I haven’t had rugs at home for several years, and I avoid things that are a fall hazard.
My mother’s food has changed over the years, and now it’s pasty, and the liquids have thickeners.
When we go out, we use a wheelchair, but at home, we still don’t.
My mother doesn’t eat alone and stays at home alone for short periods of time.
For the bath, we have a board in the bathtub.
The bed doesn’t have protection yet, but we have a small sofa next to the bed to prevent falls during sleep.
14. Do you have any other family members at risk for HD or symptomatic?
We don’t know because we don’t have a close family. My grandparents, my aunt, and my uncle have already passed away.
15. How has HD changed your life?
This question is too hard.
My childhood was marked by episodes that we now know are due to HD. But at that time, it didn’t make sense. Everybody moved away or was removed from our lives. We came to live alone, isolated, by my mother’s choices.
However, when my mum was diagnosed with HD, it all made sense. It was a relief to have a diagnosis.
Then I became stronger and willing to help the HD community.
16. What is something you wish people understood about HD?
So many things… But first, that these patients are people, and they are aware of their surroundings. Don’t treat them like “poor things” or as if they weren’t there.
Oh, and that HD is not contagious.
17. What do you do/find that helps you cope with caregiving for someone with HD?
I try to value every detail that life brings us for her and for me. It’s not easy, and I can’t always do it. But I try. And enjoy every moment.
18. How would you describe HD?
HD it’s a brain disease neurological that affects motor, cognitive and psychic abilities.
19. What is something you would like your loved one to know?
I think she knows I’ll do everything I can for her well-being.
20. If you could give any advice to a new caregiver, what would you tell them? (for example, ss, driving talking to children)
Be patient, speak carefully and calmly, but naturally, and think about happiness above all things.
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