When a caregiver verbally attacks another caregiver, you cannot help but think that perhaps they are having "one of those months", but to go past and continue the torture by writing an open letter to our family about how pathetic, cowardly, and selfish we are I have to put my foot down.
Since 2009, when Bryan was diagnosed with HD, we have dedicated our lives to helping local New Mexican families with HD/JHD through support, education and awareness. We had taken it upon ourselves when others stepped away to step up at lead the support group or it would be lost to all those who needed it. We've brought our very own HDSA recognized affiliate to the state, something we had never had before. Why is this important, because for the first time New Mexican's (PHD's, family members, caregivers, spouses, at-risk, professionals, and doctors) had volunteers in the state who are dedicated to making the lives of New Mexican's better while they struggle with HD.
We have donated 100's if not 1000's of dollars and hours of our own time to provide education days, go through training seminars, webinars, and conference calls to be better at what we do. And each time it felt like it was too much to deal with, go through, and put up with we kept going. But, take away everything I do and let me speak frankly as a person who just so happens to have HD in my family, how dare you throw what we've done back on our face. To be there for a person and a family who is new to the struggles of HD, to have late night phone calls, lunches, dinner dates, support groups and doctors appointments together and have it all be thrown back at us like we are nothing makes me think, as I've been telling my mom all night, one bad apple can ruin the bunch. Having one family make us feel like we are nothing discourages us from moving forward in hopes to help more New Mexican families, makes us feel what we are doing is not good enough, and that continuing on is not as worth it as we thought.
Not only do we have two PHD's at home who we have chosen to care for full-time because we have seen first hand the horrible conditions and treatments in nursing homes, and not only do we have bad days, days in which when at support group we cannot help but cry and whine and complain about our own circumstances, not only do we feel like the world is crashing around down on us, and not only do we feel like we are the only ones going through this... but we understand because we are not the only ones going through days like this, or feeling like this, we need to continue to be there to support others who are feeling this way too.
Don't disregard the help we've given you and to dozens of other families because you are having a hard time dealing with the stresses HD brings with it. We are here because we have seen HD first hand, from my grandfather, to my father and to my brother. When it comes to HD, my whole life has been dedicated to understanding what HD is from all angles and how to cope with it.
No, I may not be the best Peer Coordinator for the support group, that is why I bust my butt to fundraise so we can get a paid facilitator to do that job. No, I may not be the best advocate for my fellow New Mexican's with HD and their families, but unless other's step up I'm all you've got, and perhaps I am not the best Affiliate Chair, but honey there were none before me... I'm am doing the best I can with the little help from you and those like you I get, which is none. WE ARE DOING THE BEST WE CAN as caregivers, you are not in our shoes, you do not live with us, you do not come out to give us respite, one day you'll will know the struggles we face...
And this tid-bit is long over due, THINK YOU CAN DO BETTER, BE MY GUEST!
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