ILL EQUIPPED

If I have learned anything over the past five years, it is that I may like the IDEA of being a caregiver, but I am not equipped for it. And it drives me crazy, because I am accustomed to being given a task or assigned a role, adapting to it, and then excelling in record time. School, military, new jobs, knitting and crocheting, learning languages--piece of cake. Raised two beautiful, independent, conscientious women, and was a foster mom to several teenage girls. Handled all that life could throw at me, and thought I was pretty well equipped to handle anything else. Until now.

Going into year three as a caregiver for my mentally handicapped brother, I am painfully aware how ill-equipped. I'm a full-time caregiver, housekeeper, guardian, nurse, accountant, counselor, therapist, cheerleader, disciplinarian, and social services caseworker. And now with truly essential services (like school, doctors, respite care) shut down, it is a 24/7 responsibility that I share with my husband (who at times seems to be better equipped for this duty than me). We have taken on something we thought we understood, but we really had no earthly idea how complex this would be. No, we assumed it would be like raising our kids, like taking care of a small child. Or perhaps similar to  supervising an adult who was maybe a little confused. It is NOT anything like either of those scenarios. Not one bit. 

First of all, we were 40 years younger when we were parents, and though it was a learning process, we muddled through at first, gradually getting more adept at parenting, and finally, hopefully, we graduated to being parents of grown children. That was the goal, the objective, the target, the entire time our children were with us, through all the stages. We knew it was going to end, and that we would be successful. Not the case with someone who is intellectually and/or developmentally delayed. Growth and learning and moving on to the next stage just don't happen in this world. Sure, we have and see small incremental changes, but every day is the same. Every. Single. Day. 

Second, caring for elderly parents, while difficult emotionally as well as physically at times, presents different challenges. Challenges that are well-documented and expected and planned for, with lots of support out there. Everyone has parents, and everyone has people in their lives who grow old, more feeble, and need assistance. Eldercare is not anything new anymore. There are countless options and alternatives available to family members caring for aging relatives, and more importantly, a HUGE support network, whether through formal channels like healthcare and social services or church, or via informal venues such as friends and social media. Caring for a relative with "special needs" has very little of that support network. Information and resources are few and far between, and navigating whatever system exists to help families cope with challenges requires the sleuth capabilities of a seasoned private investigator. Terminology is ambiguous, and so frustratingly stigmatized. Despite all our advances with technology, travel, healthcare, mental health support, and social programs, our world continues to trivialize, mis-label, marginalize and be embarrassed by this population of individuals who, through no fault or doing of their own, were born into a world they will never understand. Along with their family members. 

Sure, some communities have programs that help, and there is an army of dedicated, selfless direct support staff who deal with folks like my brother every day, and truly excel at it, and love what they do. Believe me, I am in constant awe of these folks. They are heroes and angels and have amazing super powers. But they need funding. State-run benefits do exist but they don't come anywhere NEAR to meeting the actual need, and there is no federal program at all, not that I have found or seen. My parents took care of my brother for 65 years, moving from state to state to chase funded, barely adequate state programs. Affordable respite care, group homes, and in-home care are practically nonexistent, difficult to find, and clients are on lists for decades before a spot opens up, and to qualify, you have to prove eligibility. In our case, I had to find something that "proved" my brother's "condition" existed before his 21st birthday. Really? My parents were dead, and I had to find something that proved he wasn't faking or I wasn't lying. Like I would really make this up to get on a list for care he wouldn't receive in at least 10 years. (I did find a single page of a school psychiatrist report from 1962--luckily, they accepted that). The only other option is private pay, but again, there are not enough suitable facilities where he can reside with folks like him, so many families resort to placing their relatives in assisted living facilities or nursing homes. If they have money, they pay for a nice one. If they don't, they hope for the best and apply for Medicaid assistance.

I've lived long enough to watch our world go from institutionalizing people like my brother in state facilities, to trying to educate them separately, to attempting to normalize them into society. None of these have worked--they were merely smoke and mirrors to try to hide him away, and at the same time, not admit that something has to be done to help families, and these individuals, deal with the very unique challenges and issues that face them every single minute of every single day.  So again, I repeat, I am ill-equipped to deal with the cards we've been dealt.

But I will do the best I can, soldier on, and just get used to the fact this is something I will never excel at, never adapt to and never understand. Except with God's grace, that is.

As a nation, no, as a world, we have got to do better. We are all God's children, we are ALL created in His image, and we ALL deserve the same chance to achieve our purpose in life.

Now may the God of peace who brought again from the dead our Lord Jesus, the great shepherd of the sheep, by the blood of the eternal covenant, equip you with everything good that you may do his will, working in us[a] that which is pleasing in his sight, through Jesus Christ, to whom be glory forever and ever. Amen. (Hebrews 13:20-21)

Cutting Ties...and this time I mean it (?)

Right now, with all the hubbub over the coronavirus, the focus is on health and cleaning and preventing sickness. What better time, then, to clean all the dirt and cobwebs out of my emotional closet?

Yeah, yeah. I realize I have talked about this before, cutting ties with people who are harmful to my emotional and spiritual well-being. But, when it comes to my family, that is, the one I was born into, I have spent my entire adult life trying to cut ties with three of them--my mom and my two living sisters. And what I have learned is that saying you are cutting ties, and actually doing it are two completely different processes; carrying it out is not easy, or even guaranteed to stick.  Especially because I am, and always have been, the scapegoat, the eager to please person, the one trying to earn their love and their approval. I have always listened to their rants, apologized for things I didn't do or say, struggled to keep the communication channels open, sent cards and letters and gifts that were never reciprocated. After every toxic episode, every hurtful event, I have second guessed everything I said and did, playing the drama over and over again in my head until I am convinced it is ME who is crazy, ME who misconstrues things, ME who is manipulative, ME who is toxic.  And when I get to that point, like I am right now, all I want to do is cry and curl up in the fetal position and go to bed and never get up again.  Of course, that is not an option, and is not even close to a healthy response. 

Everyone has their own opinion and their own ideas on how to deal with this, and the solutions are all over the spectrum, from "forgive and forget" to "tell them to *&!% off," to "pray for them" to "explain it to your sisters," to "have limited contact." None of these work. At all. Or ever will. The level of manipulation they have, and still are, creating is impossible for me to explain to a normal, rational person. Solutions others give me are rational solutions, meant for rational people, not for toxic, narcissistic people with severe personality disorders. Regardless of what I say, what I do, nothing gets through to them; it's as if I am speaking Japanese, or trying to explain the theory of relativity to a two-year old, or teach a cow how to run on two legs. And I am frustrated and sad and angry and disappointed, mostly all aimed at myself. 

Sure, I have read the Psalms and I know I am covered by God's grace, and I know all of this will end and I will spend eternity in heaven by Jesus' side. And I know He is the judge, and He has a purpose for everything, and that nothing surprises Him. However, that does not stop me feeling like a very weak Christian right now, because I cannot find peace in this situation, there is no scripture that can tell me how to deal with this, no prayer to make it all go away. And the only way I can make this bearable, make it so I can move on with my life, is by cutting ties completely. 

I have tried in the past, and have failed. And I will more than likely fail again, and get sucked into their drama and their lies again. Like forgiveness, cutting ties is a lifelong process.