IDD and caregivers

While the majority of FaceBook posts lately seem to focus on political rants and memes and a general sense of "that's not fair", let me just take a little time to talk about what over one million households in the US deal with every single day, 24 hours a day. That is the number of households with an adult with IDD, and caregivers are normally aging parents or siblings.

(Quick definition: IDD stands for Intellectual and Developmental Disability; an intellectual disability is when limitations in mental abilities affect intelligence, learning and everyday life skills. The effects of this can vary widely. Some people may experience minor effects but still live independent lives. Others may have severe effects and need lifelong assistance and support.)

Our house is one of the households--when our parents died in 2018/2019, I became my IDD brother's guardian. Since January 2018, I have banged my head against a wall (several walls actually) trying to get support, help, assistance, respite, education...you name it. And despite all the pretty websites, links, brochures, and the multitude of agencies funded and commmissioned to do just that, I am, more often than not, on my own. There is no one-stop shop, no single point of contact, no real expert in obtaining even the simplest of services for my brother. Something as seemingly simple and basic as Depends required a multitude of forms, assessments, and phone calls for weeks--I gave up and just get them from Amazon's Subscribe and Save. The really important needs like housing, healthcare, respite for exhausted caregivers are so hard to obtain and have so many roadblocks that most of us just give up and lean on other equally overburdened caregivers.

The lives of me, my husband, and my brother were turned upside down and inside out seven years ago. At the age of 66, my brother had to leave everything familiar and move in with us. Suddenly we had to rearrange our schedules to ensure someone is with him all the time. We managed (barely) until COVID shut everything down and made everyone withdraw into their own little cocoons. It became too much for us, and with nowhere else to turn we tried assisted living facilities; I won't even tell you what a nightmare that was. By divine providence we were pointed towards a wonderful program in Henderson County and blessed with a family who took David in as part of theirs in 2021 for nearly four years.

But like everyone else, my brother got older, and with age came the familiar age-related issues: UTIs; skin tears; nutritional challenges; poor vision, hearing, balance, and flexibility; weakened immune system; and cognitive decline, and we knew it was time to move him back in with us, albeit temporarily. Two months ago I began (again) the search for options for my brother to have the quality of life he deserves, and for us to be able to have our own life and fulfill our God-designed purposes. Those same brick walls and seas of red tape are still there, but I will not give up, no matter how hopeless it may seem. I cry, I scream, and I stay awake most nights, praying for a solution, and the wisdom and discernment to see and implement it. Maybe that will happen soon. Perhaps it won't.

No I am not complaining or whining--I am raising my voice to advocate for families caring for IDD adults everywhere. We are fortunate. David is highly functional. He is verbal (sometimes too much so). He can dress himself (sort of), take care of his hygiene (to a point), and feed himself (even if he is messy). He is grumpy and funny and irritating and lovable. And most importantly, he is a child of God, fearfiully and wonderfully made. He deserves more. And I aim to get it for him.

Please, if you know a family struggling with caring for an IDD adult (even if it looks like they are not struggling, they are), gift them with 30 minutes or an hour of respite. Send them some Bojangles chicken for dinner. Pray for them. Listen to them talk about their day. Hug them. Fold their laundry. Anything that shows you care.

Here is a photo of David and me in Middletown, Ohio, in 1956/7.