A Change in the Wind

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.

HD Caregiving 101- 11 Things to never say to an HD Caregiver...

1. "Why are you having such a hard time being a caregiver?" Usually voiced by someone who has never been a caregiver for an elderly or ill loved one, this question can be very difficult for a caregiver to hear. As Laverty points out, it effectively takes their role of providing care for a loved one, and diminishes it.
2. "Gosh…we haven't seen you in such a long time. Why don't you get out more?" Though it probably comes from a place of love, Laverty points out that this can be an unproductive way to express concern for a friend or family member who is a caregiver. "The truth is that most caregivers do need to get out more, but this is an insensitive way of saying it," she says.
3. "You look really tired. Are you making sure to take care of yourself?" Caregivers generally have a good reason for looking tired and haggard—because they are. "The biggest issue for caregivers is that they tend to sacrifice personal care—it's the first thing that goes," Laverty says. Caregivers look tired because they are not getting enough sleep, they spend their nights worrying and making sure their loved one doesn't wander. But, that doesn't mean that they appreciate having that fact pointed out to them.
4. "Caregiving seems like a burden. You shouldn't have to sacrifice your life for your mother's." Caregiving is hard. That's why so many people, both caregivers and non-caregivers alike, refer to it as a ‘burden.' But, according to Laverty, when a friend or family member likens caregiving to a burden, what they're really telling the caregiver is that they aren't handling the situation properly and that this isn't what they should be doing with their life. "Caregivers get into their role because they started out as loving, caring people trying to do the right thing," she says.
5. "You need to get a ‘real' life." As the old saying goes, ‘you're preaching to the choir.' "Every caregiver understands that they need to get a life, have a plan, start making time for themselves," Laverty says. But, telling a caregiver to ‘get a life' is like telling them that what they're doing now (caring for a loved one) doesn't matter.
6. "Why don't you just put you mother in a nursing home? It would be better for everyone." Laverty says that comments like this can make a caregiver feel like they're not doing a good job taking care of their loved one. The reality is, a nursing home might not be financially feasible, or a caregiver may be trying to keep their loved one at home for as long as possible. Outsiders think they're offering good advice, when they might really just (unintentionally) be making a caregiver feel guilty.
7. "Why do you visit your dad so much? He doesn't even know you." If a caregiver is taking care of someone who has Alzheimer's or another form of dementia and lives in a nursing home, people may ask why they bother to visit someone who doesn't even remember who they are. "People need human contact and love, or they will just shrivel up and die," Laverty says, "Caregivers shouldn't feel stupid for going to visit someone who doesn't recognize them outwardly. As long as they know who their loved one is, that's all that should matter."
8. "Don't feel guilty about…" When you're a caregiver, "guilt just comes with the territory," according to Laverty. Caregivers want to fix everything, to solve every problem, to ease every hurt, when the reality is that no one can do it all. When people tell a caregiver not to feel guilty about something, it can make things worse by bringing that guilt to the forefront of their mind.
9. "Let's not talk about that. Let's talk about something happy and fun." When it comes to your average small talk scenario, caregivers generally don't have a lot of "fun" things to contribute. Laverty says that people need to understand that people taking care of an elderly loved one need to talk about what's going on. Friends and family members of caregivers should take the time to listen to what a caregiver has to say, no matter how ‘unpleasant,' or ‘unhappy' it is.
10. "You must be so relieved that it's over." When their elderly loved one dies a caregiver is likely to be facing a bunch of mixed up emotions. Relief may be one of those feelings, but Laverty feels that it's probably not productive to point this out to a person who has just lost a parent, spouse, or sibling. "If you diminish the event, you diminish the life and effort of the caregiver," she says. 
11. "When are you going to get over it (a senior's death) and move on?" Grief is an individual process. For some people, processing the death of a loved one will take some time. This is particularly true of caregivers, who've poured a significant amount of time and energy into taking care of the person who has just passed.

From AgingCare.com

Help Team Mabry reach our goal!

My family and I are raising funds for our Team Hope Walk on May 10th in Albuquerque, NM. Please visit the link below for our FirstGiving page to donate. We are trying to raise $1,500.00 this year and greatly appreciate every penny!

Being a part of HDSA has been a life changing experience for myself and my family, and it could change your life too! By joining our team, sponsoring, or donating, you are partaking in something larger than you and I could ever imagine. My brother and father both are suffering from this devastating illness, and it is up to us to create the awareness necessary to find a treatment and cure for HD. Through our Team Hope Walk we hope to teach many new family members, friends, and colleagues about HD and help them learn to spread the word of HOPE. Please donate what you are able in order to help my family reach our goal of raising $1,500 for our event!

Team Mabry's FirstGiving Page

Time to stop and smell the roses...

I cannot believe it has nearly been a year since I last updated on my life with HD. Since my last post was about testing, and testing negative at that perhaps I should update my readers on what has happened since then. Since March of 13' I have done so many amazing things to help HDSA and the NYA (National Youth Alliance) spread awareness for HD. I have become the Affiliate President for New Mexico, I'm also on the board for the NYA and let me tell you it has been an awesome experience thus far. With my affiliate team we are planning several events to take place in NM this year, a Caring for the Caregiver's night, Education Day, Alive & Well viewing, Team Hope Walk and so much more. For NYA it seems to be a running pace, but I love a challenge. We've got the board back up and running, website constantly being updated and planning for the NYA Day and convention for youth's in June. Recently I've moved back home with my family and to add, so has my dad! If you do not remember he was living in a nursing home for the last five and a half years. I am now helping my mom with my dad and brother full-time on top of my job, and work with HDSA & NYA. It has been a struggle, but we are finally settling into a schedule and it's become a lot easier to deal with. As for what else is going on, it seems like there needs to be a vacation or at least a moment to be able to stop and smell the roses.

Brand new day, time to change the world.

Clearly this will be a positive post as today I learned my results for HD. It was blurted out by my genetic counselor like the words just could not stop themselves from running out of her mouth, "It's NEGATIVE!" We (mom, brother, boyfriend, grandma, best friend and myself) took about .002 seconds before we gasped in some air and began crying, sobbing like toddlers. This horrific experience will lead to amazing things. I know now that I will not become a person lost in my own body and memories, but by the grace of God have been given the chance to live without wondering "what if?". I will spend the next several days I'm sure grasping the concept that I am no longer at-risk and am able to continue on this life with a renewed sense of self being and self worth. I know I will continue speaking out and raising awareness for family and friends who are impacted so deeply by HD and continue to fight the good fight. My thoughts, prayers and time will forever be devoted to those who must suffer for us to find a cure. My emotions are in overdrive, I'm not sure if I should laugh, cry or go to bed.

Sinking Ships

Tomorrow I will be learning what my results for Huntington's disease are. At the beginning of March I took the dive to get my blood test done. After being hassled back and forth between doctor appointments, genetic counseling appointments, waiting on insurance approval and finally trying to get my blood test done not once but three times the day have finally come. I'm am terrified and I think it has just hit me tonight. I cannot believe that it is here. The moment I have waited half a lifetime for will happen at 3pm tomorrow. I feel like I'm already in a fog about hearing my results. I want to cry and let it all out now, but my emotions are still telling me to hang in there. I am fearful for my future and what life after tomorrow will be like. Am I going to shout my results for the rooftop like I thought I always would, or will it be locked lips? My mother, brother, boyfriend, grandparents and best friend will be there with me tomorrow. I believe that I will walk out holding my head up because that is what my dad would want me to do. I can't help but hear my friend Katie's voice in the back of my mind saying, "you can't take it back..." I wont want to, as for now. What will this do, or change? My family and friends are so positive that I will indeed be negative. How let down will they be if my results are positive? What will they do, or how will they react? I am terribly afraid for what tomorrow will bring... Please if you read this, keep me, my family and friends in your thoughts and prayers.

2013, with a BANG!

So my year is over of trying to find myself, figure out my future, graduate from college and find the love of my life. Check Check Check... Or so I thought. All the above have happened, but now it's down to the wire. I run out of my insurance in March, so what does this mean for me and my gene status? It means I will be finding out whether I have HD or not before my 23rd birthday. Am I afraid? Of course I am. Does anyone usually want to find out what they are eventually going to die from, probably not. I argued with Mike, the love of my life, last night at dinner. He said anything could be passed on, that it's possible to get anything. Which I am quite aware of, but then the ugliest sentence that has ever passed my lips was spoken, I told him I'd rather have cancer. I think I'd rather be given the shot to be able to put up the fight. I want to option to fight the disease I may or may not have rather than succumb to it. I know I always said I would never fall in love, get married, or even ever think about having children. But, it happened. This changes the game for me. Now what? What about Mike? What does this mean for us and for him? Does he really understand what he is getting himself into? I always knew that if I didn't have HD my life would go on as though nothing had changed and I would just keep doing what I am doing, but if it's positive? Do I crawl into a hole and never leave my house, or push my friends and family because they supported me in making what would seem to be the worst choice of my life, do I tell Mike to run far far away from me because I'm about to morph into a monster? For the love of God what do I do? What did you do? Each day I pace back and forth in my own head trying to make sense of this disease and how and why it has impact me, my life, and my family. Why us?! Oh, my Lord that is a different post in itself. I try to remind myself I have amazing friends in the HD community that I will only refer to as A, L, T and D, who have the best clue as to what I am about to go through and who have really sit by me and hold my hand and lend a shoulder for this rocky road I'm trying to walk down. Any advice? Please leave it as a comment.