Operation Burnout

This has definitely been a rough week--emotionally, spiritually, mentally.  I have cried more this week, for apparently little to no reason, more than I have in the past year, and a lot of the tears have been angry, selfish tears. Tears shed in self-pity, in the "why me?" mindset.  I am so overwhelmed with the duties and responsibilities and the realities of being caregiver, guardian, trustee, representative payee, and sister of a mentally disabled adult sibling.  And, at the same time, I feel guilty for feeling overwhelmed, for feeling resentful.  And I just sit and cry, and get angry at the dumbest things, and cry some more, and feel sad.  My sleep is sporadic and not restful, I have given up exercising, and nothing I read or listen to gives me comfort, or answers to my questions.  And yeah, I read my Bible, I pray, I listen to music, try to take time for myself, count my blessings, all that stuff.  But, at the end of the day, I am still lost, overwhelmed.  I am in a black hole, with no end in sight. And I feel like I have lost who I used to be.  

Since over two years ago, right before my parents died, my life has been completely devoted to the care of my brother.  We oversee his hygiene, his choice of clothing, and how much he eats.  We shop for him, cook for him, clean up after him, and drive him everywhere.  I conducted hours of exhaustive research to locate resources for his special needs, to get him qualified for benefits in his new home state, find him a doctor, and ensure his Social Security benefits are channeled into the correct account. We supervise daily meds, and  repeat incessantly the mantras of wash your hands, brush your teeth, wipe your face, clean your razor, take a shower, chew your food, look out where you are walking, wash your hands, buckle your seat belt, look out for the car door so many times I feel like I say nothing else. When he is acting out, or throwing things around upstairs, cussing out some inanimate object, I stop and (try to) calmly intervene and figure out how to distract him and refocus him on something less frustrating.  I have to literally be a mind reader and a behavioral psychologist to ascertain if he is sick, because he is incapable of either discerning if he is sick or communicating true discomfort.  Conversely, we have had to learn that when he complains about being cold, tired, sad, or has a stomachache, that really he is upset about some microcosmic, miniscule change in his routine.  We have had to clean up overflowing toilets (and the messes he made when he tried to "help"), plastic spatulas burnt to the dishwasher coils, projectile vomit that happens without any warning (in a moving vehicle), and countless other disgusting and unsanitary incidents.  My husband cleans his ears three times a week to prevent earwax impaction--because, if he doesn't, the alternative is a one hour appointment with the doctor to flush out more wax than I thought was possible to form in a human ear in the space of six months.  Monthly pedicures and manicures are paramount, as is prophylaxis for fungal infections.  And those are merely the physical needs; behavioral, social, and spiritual needs are far more comprehensive.

Don't misunderstand...I love my brother; we volunteered to take on this thankless job, knowing it would be hard, knowing that resources are scarce, fully aware it would be a very steep learning curve.  Steep learning curve for me, that is...my brother will never learn more, or progress to the next stage in life...and that, my friend, is the rub.  Day in, day out, nothing really changes, nothing ever will.  Psychological evaluations from the past 60 years are eerily similar, talking about the same challenges, pointing out identical behaviors and challenges, regardless of whether he was 10 or 25 or 55.  Folks who don't deal with developmentally delayed adults tell me, "oh, it's like a perpetual toddler, or like my 8 year old." No. It is not. First, he is not my son...he is my brother.  Second, it is not that simple. In some ways, he is highly functioning and capable, like a 10 year old, but in others, he is almost infantile.  And in still other areas, there is no explanation. He is, was, and always will be, forever a kind of child.  A man-child. A very special person. Who will never grow up. Or be on his own. He will never drive, or get married, or have a regular job.  But when I look at him, I still sometimes see an adult.  He can do some basic things...with supervision. He can read, he loves music, and he is an awesome bowler.   But the fact that he is physically an adult lures me at times into the trap of false expectations, and, when he does not meet these expectations, as he will always, inevitably, not meet them, I am temporarily stunned, shocked, disappointed, and irritated.  Immediately followed by an overwhelming sense of remorse and guilt.  And I get angry and cry and then cry because I am crying and get angry because I am crying. And when folks who interact with him occasionally say how sweet he is, how fun he is, what a joy he is, I wonder if perhaps I am wrong. 

Yes, there are people who have it harder, who have challenges that make ours look like a cake walk.  But I am not in their shoes.  I am in mine.  And I have been completely and utterly human this week, and have succumbed to my human weaknesses.  This week, it has, for me at least, been too hard, too beyond my capability to manage, to understand, to fix, to deal with.  I am too tired to even apologize for feeling sorry for myself.  Judge me if you will.  Rant over.