My life has changed exponentially over the past few years I have had my little blog here online. I have shared my families stories and struggles, and the demons that I have battled with. I have shared my fears and inspirations and invited you all to take part in our local events as donors.
Recently, I have had another emotional and life changing experience when I left my job to stay home and take care of my father and brother who have Huntington's disease and Juvenile HD. As I have been a caregiver since I was a pre-teen, I never identified myself as such. I always saw myself as the child of a parent with HD, as a person who was 50/50 at-risk for HD, someone who one day would be sick with HD myself... Well, last year I tested negative to Huntington's disease, and since then have been battling what that means for me. In the meantime, I've moved home with my family and have begun a different chapter in my life.
Identifying myself as a caregiver is completely different than just being the daughter taking care or her dad sometimes, or the sister who helps her brother out here and there. I spend 24/7 cleaning, feeding, batheing, doing chores, looking after the pets (8 dogs, 4 horses, 3 goats, 1 guinea pig and a fish)... I try to explain to friends and family about the struggles of being an HD caregiver, I really have no clue how my mother's been doing it all these years alone.
The physical, mental and emotional stress you go through in a 24 hour period in itself is exhausting... My wrists hurt from picking up dad, setting him down, getting him in his lift and of course loading bails of hay. My back aches from leaning over his bed to clean him, sitting up to feed him, and sometimes myself. My brain is exhausted from caring for my brother with JHD who, once he wakes up at 3 A.M. is running at 100 MPH until he crashes out, or the sun is coming up the next morning and mom and I are running on empty.
Yes, I've helped in the process through the years in the caregiver needs of my father and brother. From issues at the nursing home, to hair cuts and shaving their faces, making sure they were cleaned and well fed. But, this is on a totally different level. It is much like care-taking for a kindergarten class, yes it's possible, but is it easy? No.
Trying to explain it, does not even begin to describe the daily rituals we go through. Bryan, having much of the aggression, OCD, and behavioral issues along with much of the chorea (movement) everything is a battle. His doctor always says, "pick your battles", but with Bryan everything is a battle. He can eat between 7-15 times a day. Smoke countless cigarettes given the opportunity, and "walk" or stumble through the house while dragging his feet from one side to the other another 150-200 times in a day. Exhausted yet? No, you can't be. You still need to take care of dad, make sure all his needs are met also, 3-4 meals a day, no cigarette breaks, but snacks, coffee and candy are the most important parts of his day. Have you showered or eaten yet? Nope, but now it's time to shift your attention to the animals and livestock, make sure they all have food, water, treats and cookies. Ok, where were we, oh yeah your shower, wait there's dishes in the sink, now lets do some sweeping, oh there goes the laundry timer, fresh towels! JUMP IN AND OUT of the shower, a military bootcamp style shower. Before you even have time to dry off, dad is trying to wiggle out of his chair while brother is yet again demanding either food, drink or cigarettes, maybe all three...
People ask why I do it, how I could give up whatever my plans were to stay at home with my mom, dad and brother to spend my entire day and night with HD... I have the next 50+ years of my life to work in the real world. Maybe it is my survivors guilt, or perhaps I'm not ready for the real world yet... I find the stress and the tantrums are far less important when my dad is having a good day, smiling, laughing, and talking, and when Bryan has a moment of peace, when his body is relaxed and he can enjoy a day in the shade of our barn without JHD flaring up.
We were all born for a reason, and I am here for them.
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