Caring for someone with HD when you have HD

Double slap: How do you cope when you are caring for someone with Huntington’s Disease and you have it as well?  The turmoil of seeing someone you love deteriorate right before your eyes and knowing that you have this coming in your future.  How does that dig into your head and your outlook on life?

My experience is with the “beginning of the bad” stage of caring for my father.  There was a time when he had conjured up this fantasy of idolizing me and my sister as his “trophy women”.  He wanted to exercise with us to watch us.  He wanted to be out with us alone so he could have his opportunity to proposition us.  HD did that to him and I have forgiven him completely.  However, looking back to when he was un-medicated and out of control, I often think of when I am “so gone” that I can’t even control my feelings towards my own child.  I know that I love my son Logan more than anything in the entire world.  But will I ever mistake my motherly affections for some feeling that is totally and completely wrong?  Will I ever attempt to French kiss my own son?  This terrifies me and has definitely fucked with my head.

I know that people will say, you can’t think that way.  There are so many new advancements in science coming to help with these issues…but I say…I still worry.  It’s natural.  I love my son so much that I am willing to do whatever it takes to save him from my future self.  It took a while to get over this fear.

As far as the physical changes, having someone to care for that is a potential sample of your future…always staring you in the face…it can be quite exhausting.  For a short period of time when I was working out of my home, I would take care of my father during the day while my mom was at work.  He would sit in my office and just watch me work.  So here’s two people with HD…my dad’s ruminating about how much he loves me…and I’m ruminating about how much I think he’s lost his mind and that I might be losing my own mind.  It was a vicious circle.  And his movements!  They were the worst.  It was a constant distraction and always made me feel anxious.  I started getting little phantom twitches in my height of anxiety.  I also lost a lot of sleep because I knew what had to be done.

I finally had to plead with my mom to find him other day care plans.  That was hardest thing to do because I love my parents so dearly.  But it comes down to what had to be done to get my head straight again.  Sometimes you just have to break yourself away from being part of the care team.

Let’s take a moment to give a “shout out” to my mom Janet.  She’s been the primary care provider for my father for these past 10 years of “Hell”.  She has had to endure the pain and embarrassment of his mental episodes…imagine how you would feel if your spouse tried to French kiss your children.  My mom is an angel.  She still cares for him in as loving a way as if nothing happened!  God bless her. How it is that she never left him is only in God’s understanding.

So with an attempt to help this magnificent woman, I have found ways to cope while I am caring for my father.  These are some benefits I have found that help me get through the hard times:

  1. If you have mild symptoms of Huntington’s Disease, you have a unique understanding of what is going on in the head of someone that is unable to communicate every well. This makes you invaluable to the overall care of your loved one.
    1. My mom would often wonder why my dad was so fidgety or why he would just stand there and hover over her while she was doing the dishes. I had an opportunity to be my dad’s voice and explain to her that he was unsure of how to initiate a project or a conversation. I explained the benefits of using positive direction instead of yelling at him or nagging him. She found that after a while he didn’t hover so much. He was also happier and healthier.
  2. You can face your fears head-on.
    1. Seeing it head-on over and over gives you an opportunity to build up a natural protective numbness to the intensity of how sad this disease is. It is important to give yourself a break from time to time.
  3. You have an opportunity to educate yourself on ways to creatively adapt to your own changes.
    1. My dad is 66 and can’t climb stairs. My husband and I moved our bedroom downstairs so I can start getting acclimated to a safer environment.
    2. I see how medications and stress effects my dad. I can use his experience as a learning tool for myself.
  4. You have a unique connection with your loved one that can be very strong.
    1. Sometimes I tell my dad “I understand you daddy, like no one else.” He just smiles and nods. His eyes glimmer with little tears. We both understand each other without even having to share words most if the time. This feels really good.
  5. Helping in the care makes you feel really good about yourself.
    1. Feeling good about your involvement in caring for your family is very beneficial to your own mental health.
  6. As a team you can help educate others.
    1. I often take my dad to my speaking engagements to the medical community. He is the perfect example of what Huntington’s Disease looks like. Often is it a great way to show “the before and after”….me as exhibit A (the healthy business professional who will one day have serious problems) and dad as exhibit B (obviously HD afflicted). This gives my dad an opportunity to help me educate. And he always tells me if he’s in the mood…I respect his privacy. He has given me permission to share his story as much as possible in order to educate everyone on what HD really is.
  7. You can be a role model to your HD-afflicted loved one.
    1. My dad is so proud of my accomplishments and my strength. As I can be an example to him to get up and be the best I can be every day, he is inspired to stay healthy for as long as he can. We made a pact that we want to be cured together.

Wishing you all strength and health,


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