Finally Out of Solitary Confinement

….and the sun was out

Sometimes life can feel like you are in solitary confinement when you are a caregiver. Hek, even if you aren’t a caregiver it can feel like that. The walls of life can squeeze in on you so hard it can seem impossible to move, or even turn around at times.

When another human is so dependent on you, or when a job requires every minute of your attention it can feel very confining. That can leave you wishing for an hour out of the hole and in the yard so the sun can hit you right on the face.

Sometimes, even in solitary, I find myself squeezing my cheeks through the bars on the window as far as I can just to feel the warmth from the outside sun. It helps me know that I’m still alive and an individual regardless of my job title.

I mentioned in my first post I would share more details of our transition to Florida in later writings. Here’s one that sticks with me.

Recently, well, last year….but it feels like yesterday in my mind….I had interactions with a medical supply company, the insurance company, an agency that was supposed to help persons with disabilities in Florida and a case manager. It was a gobbledygook mess that left me depleted, baffled, in tears, and angry all at the same time. I really hate when my family has to see me fall apart like I did. Thankfully, they have all seen me at my best and worst, and still let me sleep inside.

Anyway, I needed some basic supplies for my adult intellectually disabled daughter that the insurance company told me were in fact, covered under her policy because of her diagnosis no matter how old she was. The medical supply company said because she was over 18 the supplies were not covered. That was after I gave them a ton of medical information and they tried to place my order 🙄. They referred me to (hold on to your hat it’s a bumpy ride) an agency that helps aging and disabled persons (not to be confused with the Agency for Persons with Disabilities aka APD) who said since my daughter was not on the waitlist for APD to receive any kind of services, that I would need to go through the application process with APD before they (not APD) could help my daughter pursue getting medical supplies through them. I think I got whiplash!

However, I had spent the better part of 2021 getting my daughter approved for services through Florida’s Agency for Persons with Disabilities (APD) at which time she was placed on their never ending waitlist to maybe, someday, receive services. This led me to different case managers that the insurance company had told me I didn’t actually need, after I had requested and was assigned one in 2021, which they promptly cancelled. 🤯🤯🤯

Holding myself together by a thread I continued on the phone and internet for days. I made phone calls, searched websites, sent emails and left voice messages trying to find somebody, ANYBODY who gave two shits about the gobbledygook they dunked me in.

After much perseverance, long suffering, and arguments about coverage, I finally,

F. I. N. A. L. L. Y.

found the right person, who knew about this coverage and how to get my hands on these much needed supplies. One person. One person, who knew how to do their actual job was all it took for the flood gates to open.

You think God doesn’t have a sense of humor? I beg to differ.

After all I went through, I specifically requested a monthly delivery of supplies, ONCE A MONTH, to our home. What I got was supplies delivered every few days. Boxes and boxes. Cases of supplies, until I had an entire year supply! Now, I had boxes and boxes and no where to put them! I had to laugh as the deliveries kept showing up. 🤦🏼‍♀️ Every few days, more boxes, more cases, more and more!

Did I dare call them and tell them to stop the deliveries? NO WAY! I was not about to undo my hard work. Ha!

I think that experience of never ending cases of supplies was me squeezing my cheeks through the bars in solitary confinement and having the sun beat down on my face! After feeling isolated, confined, dragged down and emotional…..the sun came out. Haha, I gotta laugh or I will cry.

Why does everything always gotta be so difficult when you are laying down your life to care for another human being who can’t care for themselves? Why do we gotta fight for every single thing they need? There has to be mounds and mounds of documentation and medical records, diagnoses, X-rays and MRI’s, school records and IEP’s, specialist records and on and on it goes. Nothing is ever simple. When all they really need to do is meet with the person for 5 minutes and they’ll see the person is special needs and will need help of all sorts for the rest of their lives. But, nope. That would be too easy. Rather than proving they are special needs ONCE we have to continue proving it every single time they have a need. We need a paper trail 30 years long to prove they are special needs.

Aye-yai-yai!

So, next time your job, doing whatever, squeezes the life blood out of you….look for a window, even if that window has bars on it! The sun WILL inevitably, at some point, shine down on your squished cheeks and warm your face 😉.