There are many different promises made around Huntington's Disease. The need to make sure all your bases are covered can be a driving force. There are so many things to deal with and it is impossible to predict in advance all the possible scenarios of the future.

I have my living will signed and ready, a power of attorney picked but not legalized, yet. At 37 years old I should not have to be thinking about these things, but the paper work is a necessary evil, unfortunately. For when the day comes that my judgment is called into question, there must be an alternate driver prepicked to take over the drivers seat.

It is both an honor and a huge responsibility to be asked to be ones power of attorney. It is not something done lightly. This is the person who will be making all the decisions regarding your future care and your finances. It is very important that the power of attorney papers are signed every few years to establish that this person has repeatedly been your choice.

There are a lot of very deep promises made around Huntington's Disease. The promise to care for the HD loved one all the way to the end. The promise to honor all last requests. The promise to put someone into care when they become violent. The promise to keep the HD secret from our children, families and friends. The promise to spouses that HD will never be a part of our world. And sometimes we promise ourselves that if we just ignore the HD long enough that it will go away.

Within HD families it seems that some people think they can escape the family curse if they just cut all ties with their HD affected family members. Unfortunately Huntington's is not something you can outrun; it always catches up eventually. But I guess one cannot pretend HD does not exist in their world when they are surrounded by family members who are suffering from it. Sometimes family members run away because they can not bear to watch their loved one deteriorate.

I have two Uncles who disconnected from our family. One ended up on the streets and the other had 5 grown up kids who had no idea they were at risk until I looked up these 20 yearlong lost cousins. When I casually asked if there was any HD on their branch of the family tree, I was stunned to hear "what is Huntington’s Disease?" It had never even entered my mind that these cousins would not know their at-risk status. I felt like a total jerk and wished more than anything that I could take that first phone call back.

My Uncle made a promise of secrecy many years back. He never wanted his kids to know that they were at risk for HD because he wanted to spare them all that worry growing up. I think it is a very natural reaction to want to protect your kids from something that will break their hearts. Unfortunately he died right around the time that they discovered the gene and testing became possible. Promises and secrecy can do a lot of damage within an HD family.

Most promises are made with the purest of intentions, but sometimes promises must be broken. And the guilt at the thought of going back on ones promises drives caregivers to care for their HD loved ones way past the point of the caregivers abilities. Having to be the one to decide when it is time to place someone into care is not a position that I would ever want to be in. Being a caregiver means making all the hard choices.

The caregiver cannot win here. If they keep their HD loved one at home then they feel guilty for the time the persons care takes away from the rest of their family. Or guilty for losing their patience repeatedly when they are burnt out. Or guilty for how the HD person's presence in the home may be negatively affecting the rest of the family. Especially when violence and children are involved. And when the caregiver has reached the end of their capabilities caring for the HD person, then there is guilt for breaking the promise of "in sickness and health and for better or worse." People who make these types of promises are also the ones who fully intend on keeping them, they are people of their word. When it is time to place a loved one into care the caregivers feel like a failure, instead of the hero they truly were for handling it as long as they did.

I initially asked for a promise that if I ever become violent that I want to be placed in a facility. I do not want to hurt the people I love. But I have since realized that it would not be fair of me to weigh anyone down with that promise. A promise is only a burden to the person who must try to keep it.

I trust that those people around me will make the right choices when the time comes. I have expressed my wishes, but do not expect anyone to promise me anything. The last thing I ever want to be is a burden to my loved ones.

My only expectation is that they will do the best they can, for as long as they can, and then let me go. Letting go when the time comes will be the hard part for them, but I would want them to let go when they are struggling too much, or if I become violent.

Trying to predict the future is a challenge. All I can do is wait for the cure along with everyone else. To live every day like it were my last, and not make anyone make any promises...