HD: Told By The People That Live With It.

If you want to share how Huntington’s Disease has impacted your life. Send it to dwd1983.dd@gmail. Com  and you’ll see it posted here.

“Dad was an abusive alcoholic. Mom was physically handicapped-born with no muscles in her arms. One arm had some use and, thankfully, she was stubbornly able to raise us. I loved her to pieces. I was proud of my mom and her ability to overcome her disability. I was overprotective and extra sensitive to her needs as well.

My brother and I came back from the foster home, after 3 years, when I was 11 and he was 14. (Mom had chosen to remain with him and let us go into foster care because she didn’t fee like she could live without him.) Mom was mean all the time. She burned her fingers when her forgotten cigarettes burned down to the butt and she didn’t even know it. She fell in the shower, couldn’t button her pants, got scared, got unreasonably furious, became incontinent at times, got lost driving, got into car accidents, would only drink cherry 7up and not eat. Dad worked 72 hour shifts as a fire inspector in San Francisco, an hour away. My brother and I were just lost.  The doctor said it might be stress or Alzheimer’s. Said she had “6 months to live”. Mom insisted on going clothes shopping and bought all Barbie themed clothing. Dad just drank more.

By 14, we were feeding her and changing her diapers. The only vocal communication was, “I hate you!”. Why was the only thing she could feel-anger? Dad drank more, so I took over writing household bills, grocery shopping, and housekeeping.

My brother invited anyone who would come over and they drank more. I cried when after helping her to the toilet, she fell next to it and got wedged in between the wall and toilet. She was so stiff and, at only 80 lbs, too hard for me to pull up. I cried and she found the words to repeat, “I’m sorry”, as if it were her fault. It broke my heart.

Dad retired and moved themselves to his home town in Georgia. I was finally free.  Policie station called 3 months later and asked what to do with her because they had arrested him on DUI and had to put her in the cell with him while he sobered up.  Flew out to bail him out and take her to doctor for a huge abscess, or bed sore. Set them up with household necessities, Medicaid, and food stamps.

One year later, APS, “adult protection services”, called and gave me the choice of coming to get her or putting her in a home away from him. I flew out and brought her to California. I got her tested for HD. She had a count of 43. Dad followed 1 year later. He couldn’t live without her. He got an apartment nearby.

I went through testing process.

Two options:
If I am positive: Become a nurse/PA and join the peace corps to travel and spread positivity-possible suicide when it was time.

Negative: Finish school, live a “normal” life

I have a negative result with only a 18 count.

My mom died 16 years after the 6 month prognosis. I was a fierce advocate for her care in the nursing home. A Polaroid camera and an Ombudsman are key. She only died because I chose not to treat one of the many aspiration pneumonias. I still have dreams that I need to go visit her because it had been a couple days. (Guilt dreams?) My dad died of cancer 6 months before her. I was his caregiver too.

My brother was diagnosed positive 3 years ago. He has no one. His symptoms have left him an outcast among his peers, old friends, and relationships.

The weight of carrying the responsibility again is massive! I have a great husband, a 10 year old son and 5 year old daughter, who are perfect. I have everything I’d been scared to dream of. I’m my brother’s only family and caregiver. He says he understands that I can’t keep him at my home when it’s time. He’s not angry like mom. He’s overly passive. But he’s creepy, sneaky, and ignorant to how to help himself. He trusts me to handle his life because I can.  I’m trying to find a babysitter for my daughter next week because we’re traveling 1 1/2 hour to his 3 hour semiannual HD appointment.

I am so lucky. I have to appreciate and cherish the life I have. I don’t have a right to feel down. I don’t have HD. (Even got a tattoo to remind me-the only one I have). I’ve always been strong. I’ve built a wonderful little family in spite of the example I grew up with.

I need the support group that is an hour away sometimes. I need online support sometimes. This is a disease that is hard for people to understand all of the intricacies. All of the emotion of losing a loved one who is physically still there.

I reread this and sound strong. But, God, I don’t want to do this again!”