Care givers and why they are awesome people

One thing that truly bothers me is when a caregiver in a situation is treated as though they have an easy task or not given support. Caregivers, regardless of the situation – whether it is Huntington’s or simply old age – have a really tough job. They have to care for and provide for another human being who is not a child, and that is part of what makes all the difference. A child can be told what to do and will generally listen; an adult who is told what to do will tell you where you can stick your demand.   Adults have an independence that can make care giving a terribly frustrating and difficult task. They think they don’t need your help. They think they can do it their way. They think their way is the right way. They don’t aknowledge your authority to tell them what to do. It can be very much like talking to a wall; you get no response.    Caregivers in an HD situation, though, have a slightly more difficult task. To illustrate this point, I will tell you a few stories about my uncle, who was diagnosed with HD about 6 or 7 years ago. First, let me preface all of this by saying that the people in my family are known to be stubborn; our ansestral herald could be a mule.      When you pair that kind of innate stubbornness with someone who is very delusional about their condition, it can be a recipe for disaster. My uncle can barely walk because his movements have become severe, but does he use a wheelchair? No. He will walk, darn it, or not go at all. He still mows his lawn on his ride on tractor because it makes him feel useful to cut the grass. The other day, he decided he needed to trim his hedges, so he got out his electric trimmer and went about doing it, when he had a movement and nearly cut off his finger.   To make matters worse, he refused to go to the hospital, despite everyone’s attempts to make him go. He simply would not listen. Now, my uncle lives in rural Virginia, so it is much harder for family to get to him and make him go to the hospital, but he simply would not listen. It is this kind of bizarre thought process that caretakers of people with HD have to deal with. 

Additionally, the nature of the disease is truly difficult to watch, even for those who don’t know someone well. So imagine watching someone you love very very much losing every aspect about them that makes them who they are, but there is nothing you can do about it except watch. It is hard. It is painful. It is a daily struggle with who they used to be for you and who they are now. As the disease progresses, there are more conflicts between who that person that you love is today and is capable of today compared to how they were a year ago, two years ago, five years ago. Every day there is a fresh reminder of what has been lost. 

Caretakers of people with HD need a lot of support from family and friends, but the nature of the disease tends to drive people away. It is hard to watch a person go through it, and many, like me when I was younger, choose not to. It is easier and less painful. But the caretaker is often left high and dry during a point in time where support is needed the most. This is why I am a big proponent of the Huntington’s Disease Society of America (HDSA). Some people won’t support HDSA because only 10% of donations go to research. However, a large portion of donations goes to resources for family members and caretakers, such as counseling sessions, group meetings for caretakers to vent about whatever they want to talk about, social functions so that people with HD and their families can meet other people like themselves, because most people don’t understand what we go through. They help take care of the HD person and their whole family, because all of them need the help. 

To donate to HDSA, go to www.hdsa.org, or donate to my fundraiser directly on My fundraiser page.