Sometimes I feel all alone, like there is no one in the world who truly understands me, or really comprehends what I am experiencing. I mean, I know I am not alone, i know I have friends, and family, and of course, most importantly I have God, my faith, my beliefs and the knowledge that no matter what happens, no matter what I am going through, there are folks pulling for me, pushing me along, and at the end God’s waiting with open arms. But still…like I said, I feel alone, confused, inadequate, especially when it comes to managing what life throws at me. And I am not looking for pity, or sympathy, or even recognition—just awareness. Everything in my life that I thought would be hard—exams, dating, finding a good husband, childbirth, cancer, family strife, deaths—it all seems so easy now, and I look back and wonder why I ever worried. This? I don’t know…maybe it gets easier. Maybe I will get better at it. Maybe I won’t.
Ten years ago, my parents had a serious talk with me and Alex: they wanted to know if, when they died, would we be willing to take care of my brother. Ten years ago, we thought about it for a few days, talked it over with each other, and then willingly and eagerly said, “Of course!”. Heck, he was my older brother, after all, and I grew up knowing what all that entailed, right? Every year or so, after a particularly exasperating week with David, my dad would ask “are you sure you still want to take care of him?,” we would ask what happened, they’d answer “you have no idea,” and we would roll our eyes and reaffirm our willingness to take over David’s care when it became necessary. Ten years ago, we figured we would be prepared for that reality, and observed how my parents took care of him, how they spoke to him or about him, how they dressed him, entertained him, and fed him, and thought to ourselves, “we got this…hands down!” Ten years ago we were still working, albeit retired from the military, and were enjoying our empty nest life—the girls were all married, there weren’t any grandkids yet, and the thought of our parents dying was a dim and distant occurrence. Sure, we knew our parents were getting older, and sure, we knew it was inevitable that they would eventually die, but the reality of them dying and leaving us with that responsibility of caring for my brother was a long, long way off. Ten years ago, I was confident I understood the intricacies of dealing with an adult who is handicapped, intellectually and developmentally delayed, with “special needs.” I did not. Neither of us did. And we’re still learning. After almost two years of being 100% responsible for him, we still do not understand the enormity of it all. And for me that is the scariest part…not understanding. Because I pride myself on how quickly I can become an expert on just about anything that I put my mind to, that if I can read about it, be exposed to it, talk to folks, and of course pray about it, I will conquer the problem.
But now, more often than not, the sheer enormity and indefinite duration of this caregiving responsibility is simultaneously rewarding yet intimidating, comforting yet mind-boggling. It is like nothing we have ever experienced, or imagined, or thought we would experience. When our kids were growing up, we faced pretty much the same challenges as any parent, so we had this pool of common knowledge and similar experiences to tap into, and if that was insufficient, we had tons of books and other resources. Potty training, learning to tie shoes, homework, dating, driving, leaving home—we would meet each hurdle and eventually clear it, then the next, and then the next. Until our children became adolescents, and finally adults, and needed us less and less. Then, our parents grew older, and less able to manage everything on their own, so we visited more frequently, called more often, explained the nuances of 21st century technology, and eventually, watched them become more and more dependent, and held their hands as they went to be with those who died before them. Inevitable stages of life and growth and maturity and death. And again, we were surrounded by friends and acquaintances traveling the same road, so again, we had access to a seemingly bottomless well of shared knowledge and experiences. And if any of that failed to shore us up, the internet held an inexhaustible treasury of resources.
Taking on full time care of an IDD adult, though, at an age when most of our friends are going on cruises and RV trips and taking on hobbies like pickle ball and tennis and hiking, is so hard to navigate, especially when no one we know is in that same predicament. Sure, my friends may have a friend who has a kid with special needs, or they may have a cousin with Down’s syndrome, or perhaps one of their own kids is IDD, but we do not have ANY friends who have taken on the care of a sibling who will never be able to care for himself. And trying to find programs, resources, benefits, caregiving tips, respite care, or just a support system is daunting, because there does not seem to be (at least not to us) any one agency or department or organization with all, or even most, of the answers. Guardianship, social security representative payee, trusts, medical power of attorney, living wills, medication, healthcare coverage, psychological testing and treatment and coverage, public programs, financial assistance…the list is endless. Online resources range from frustrating and incomplete to nonexistent and conflicting, and there is not any overarching federal government agency, that I know of, that provides guidelines. Most of the programs vary by state, and then, by the county within each state. Availability and eligibility for state programs are hard to navigate, and in most cases, the waiting list for community-based services is 8-10 years. We were lucky that our local vocational services had an opening for my brother for five days a week from 8-2, and most of my knowledge I have gleaned from random conversations with people in the system, but most of the time I only get a small piece of the puzzle, another phone number to call or website to visit , and still, I end up confused. In the 50s, kids like my brother were “mentally retarded,” then in the 70s they were labeled as “mentally challenged” or simply, “handicapped.” But political correctness marched on, and that was watered down to be “special needs,” and after discovering that was too vague, people like David are called “intellectually/developmentally delayed,” or IDD for short. Whatever it is called, whatever the label, the availability of funding, training, and support services has not improved with the times—it has only become more complex, a huge labyrinth with lots of dark corners and dead ends, and more and more impersonal.
We provide his shelter, his meals, his transportation, and companionship. We make sure he doesn’t eat too much, that he takes his medicines right, that he washes his hands and brushes his teeth and shaves his face. We help him pick out appropriate clothing for the weather, and make sure he doesn’t walk in front of a car, or stop him from picking up broken glass or making unsafe choices. We show him every third day how to use a phone or shave his face or clean his razor or set a table. This is so hard to comprehend, because no matter how hard we try, my brother will never change. He will never learn things most people take for granted, or understand basic social nuances, or be able to be completely on his own. We have to guess what he is thinking, or determine if he is in pain or sad or hungry. It is exhausting. Sure, it is rewarding. But it certainly is not easy. I know, I know…nothing in life is easy. But it seems to me that with our vast technologically advancements and innovations and global, instantaneous communication at our fingertips, we could offer families who provide the day-in, day-out care of IDD adults a more comprehensive support network. Kudos, though, to the direct support personnel at TVS, the liaisons at Vaya Health, and our very understanding and compassionate community. And to the families who deal with this reality every day, to the ever growing population of aging parents of IDD “children,” I am forever in awe of what you achieve. Every day, 365 days a year, without recognition or appreciation. Hats off to all of you!
And to those folks out there who, like me, have a brother or sister or cousin who will always need someone to look after them, start researching your options now. Because the more you know, well, the more you know.
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