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)
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