Frustrated

Me and David, 1959

Being the guardian of my brother is hands down the most frustrating, exasperating job I have ever had; although I know more now than I knew three years ago when he moved in with us, I feel completely inadequate to handle life as we now know it. I cannot even really explain what our life is like 24/7, because no one would believe it. I thought I had seen it all, that the trials and surprises and difficulties were over, that we (Alex and I) could finally get on with our retirement, and enjoy our lives and each other. If you follow this blog, you know the story; if you don't know, well, here's the Readers' Digest Version: Crazy mother, depression, estranged siblings, false charges, lawsuit, caregiving of and then deaths of all parents, culminating in caregiving of mentally handicapped older brother. In four years. And we figured we could handle the last one. We cannot. It is a Herculean effort that has me on my knees and in my Bible on good days, and in tears and not sleeping the rest of the days. I have felt my psyche and my soul slipping away as I try in vain to tackle this insurmountable task of caring for my brother in our home, while still trying to retain some sense of normalcy as a wife, a mom, a nana, and a sister. Instead, all those other roles are subjugated to the role of caregiver. A caregiver who does not have any hope of conforming her brother to her ideas of how to act in her home, or to understand the rules of proper adult social behavior. I was not trained for this, my husband was not trained for this, and we are at an impasse. Each day is a new horror, a new realization that no matter what we say or do or demonstrate, it is all lost on my brother. It is as if we are speaking a foreign language to someone who cannot hear, or trying to adapt a wild thing from another culture to live in our home and comply with social mores that he will never comprehend.  Like some crazy, mutated version of Jungle Book.

And it is not merely the diminished mental capacity or behavioral issues we must face--he is also scarred (and still scared!) by the abuse he suffered at the hands of his (and my) biological mother. I, at least, can work it out through prayer and counseling and reason, but he is imprisoned in a world of torture and abuse that to him, never ended. So the behaviors, the coping mechanisms he learned as a toddler--lying, hiding things, obsessive compulsiveness, inability to cry, anxiety, cussing and yelling at inanimate objects, insomnia--these behaviors continue, and grow more embedded in his personality year after year, until they are habitual and automatic. And unchangeable. We see it in full display when we ask simple questions and he shifts his eyes and makes up a story, and will stick with that story regardless of reality staring him in the face. We have tried, God we have TRIED, to help him see we are not my mother, we are not going to punish him; we have tried millions of times to teach him the value of truth, and the safety there is in knowing and sharing truth. And, most of all, we have  spent countless, exhausting, emotional hours upon hours impressing upon him how much we love him and care for him and have his best interest at heart. All to no avail. I am so lost, so defeated, so darn, yes, frustrated in my inability to reach him. My failure to prove I love him, to have him see and feel and experience our love. And yes, of course, the selfish human desire (no, need) to be appreciated for what we are doing, that is always there, lurking in the background, demanding attention for our efforts. Mostly, though, I am frustrated in the loneliness I feel, the sheer overwhelming frustration in not being able to explain why I feel this way to outsiders, and I am angry  at my dead parents for not having prepared us better for this task. We are not psychologists or social workers or therapists or mental health professionals; we have no degrees or training or even an online course in special education and special needs challenges. We are merely a married couple with grown kids and a desire to help and to love and to take care of our family. It is not enough. Yes, through Christ I can do all things, but the method I use to accomplish those things may not be the method I thought we would use. 

And you know what makes it so infuriatingly harder? Two things--folks telling us what great people we are for caring for our brother despite his challenges, and folks who only have to interface with David for short periods of time telling us what a joy he is, how blessed we are to take care of him, and how lucky he is to have us as his family. Yeah, both those viewpoints only serve to make us feel even more trapped and more inadequate than before, and when we try to explain, to provide anecdotes and vignettes of what our days are like now, we get one of two looks: the "deer in the headlight" or the "shocked yet benevolent" look. Alex and I could relate a zillion examples and reasons why our situation is so untenable, yet when we tell folks the stories, they either sound inane and silly (even funny), or so outlandish as to not even closely resemble the truth. So how do we communicate the exhaustion, the stress, the utter monotony of living with an adult who ignores common rules and social values, has no personal space, or sense of right or wrong? An adult who cannot really clean himself or take care of brushing his teeth or wipe his butt or remember to wash his hands? A 68-year old man who talks to himself and feeds himself and dresses himself but who becomes catatonic when asked a simple question or has to go through the TSA checkpoint at an airport? A man who merely says what he thinks you want to hear because he just repeats phrases and responses he has learned from his parents for the past 50 plus years? An adult living with us in our home who truly lives in his own world where his rules and his beliefs are paramount, who moves things around or throws things out or sneaks down in the middle of the night to binge on whatever food he can find? An adult who will perseverate on a hangnail or an imaginary injury for days, but who cannot or will not or just plain doesn't understand the need to let us know he has been peeing blood for two weeks and probably has a severe infection? The daily litanies we repeat are obeyed (sort of)--brush your teeth, wash your hands, here are your pills, chew your food, tell us what is hurting--but they will never be learned. Then there are the safety issues--picking up snakes (thank God it was not venomous), eating food from the trash, walking across the street without looking, carrying too many things down steps, picking up broken glass, walking backwards up stone steps. We are always on our toes, trying to prevent the next emergency. Most of all--David is 24/7, no breaks, no quick trips to the store without him, no date nights, no 30 minute walks while I leave him at home. Every minute, every day, 365 days a year. 

Yes, we love him. Yes, we will take care of him always. Yes, we know he is made in the image of God and that God has a purpose for him as well. He is my brother. We promised we would care for him. We know God has a plan for us. We just want to know where it all fits together. So, we asked. We prayed. We waited. And asked and prayed some more. For God to close doors and open others. Friends prayed. Family prayed. 

God answered prayers, as He always does. In His time. And I am trying my hardest to trust His answer, and to not become frustrated.