I’ve always known I would be my sister’s guardian (or conservator, in legal terms), at some point later in life. It’s something I thought I accepted early on, but never truly saw as real. It was like this fictional future, way off in the distance, that wasn’t yet in focus, but would be just fine when the time came. After all, my parents were going to live to take care of Amy, their first-born, at least until my own children were grown and had flown the coop. That’s the plan, when you have a sibling with special needs.
I warned my husband of such a future with me, before he even popped the question. With each house we’ve owned, we considered an additional bedroom on the main, and wheelchair accessibility. I pretended that I was preparing to step in when my parents passed away, in 20 years. I knew I wasn’t totally ready, but I thought I had plenty of time. It takes plenty of time to prepare be the guardian of someone who is profoundly mentally retarded, has Cerebral Palsy, a seizure disorder, and requires full-time care, for even her most basic needs. She cannot walk. She cannot talk. But she can think and feel, and knows happiness and sadness. The thought of that kind of responsibility is more than overwhelming.
It’s funny, when you look back, at the little things you notice. And how often, you can see God’s fingerprints all over those moments. The moment that comes to mind most these days is of my friend, Kimberly, and me, sitting on a plane, flying back from Salt Lake City. It was early – still dark outside – and we were exhausted from a weekend of learning about essential oils. I don’t remember the full conversation, or how we even got to the subject. I just remember Kimberly asking, “What are you going to do if something happens to your parents? What are you going to do about Amy?”
It was not a question anyone has ever asked me before, point blank. I’ve had a few conversations with some close friends, and they knew I was worried. But that was one of the first times I spoke my deepest fears out loud, and replied, “I have no idea. It terrifies me. So I hope I have another 20 years to figure it out.”
Twenty years? Who was I kidding? I mean, I’ve never been a whiz at math, but it doesn’t take a genius to figure out I was living on borrowed time. My parents were well into their 60s – Dad, nearly 68, and Mom, 66. I was only fooling myself. But not for long.
When I arrived home that very afternoon of the in-flight conversations, and was just getting settled, I found out my dad was in the emergency room, with a possible stroke. My husband and I got there as fast as we could, to make sure he was okay, and to help Mom with Amy. It was mild stroke, and they were able to give him tPA (the drug known to reverse stroke deficits). But my dad didn’t react like you’re supposed to react to that drug. One percent of people who are administered tPA will acquire a brain bleed like his. That was the day my dad – who helps my 4’11” mom lift and lug my sister and her wheelchair around, who takes care of everything at home, who is my mom’s rock – had a massive hemorrhage on the pons of his brainstem. It was the worst-case scenario, outside of death.
That was one year ago last week. It has been a long year, so here’s the short of it. My dad is home, on a feeding tube, and completely wheelchair bound, like my sister. And my little 4’11” mama is taking care of them both. All day. Every day.
Of course, I help her all I can. I live a mere five miles away (another fingerprint from God). I spent the entire first half of this year cooking for them, helping with my dad’s therapy, running errands, and staying there all day, while my children were at school, so my mom could catch her breath. But life with a hard-working husband, and three children who have food issues and sports and homework, can remain on pause for only so long. And truthfully, every day that I was there, seeing the painfully slow progress with my dad, watching my sister’s seizures spiral out of control, sent me into a despair unlike anything I’ve experienced. I convinced myself I wasn’t depressed because I was always in motion. But the anxiety I carried inside was like a vice-grip on my heart, my throat, squeezing the life out of me, until I literally felt like someone was choking me.
Then, my body started acting unusual – extreme exhaustion, headaches, crying all the time, weight gain. I’m here to tell you, vanity isn’t always a bad thing. Because I never saw a doctor during this time…until I realized none of my clothes fit. I was exercising six days a week, eating like a bird, and still gained 20 pounds of fat (don’t be fooled into thinking it was muscle).
I’d always heard that stress could kill you, but I just assumed that meant a heart attack. As it turns out, I was killing a vital gland in my body – my thyroid. We caught it before it was dead, but my doctor put me on meds, twice daily, and possibly for the rest of my life. I knew had to take a step back. I had to breathe. So I told my always understanding mama, I needed a break. And of course, she gave me one.
But even when I’m not there, I’m thinking about what this is doing to my mom. In case you don’t know, I’m her biggest fan! I would do anything for this woman. She is my best friend and I adore her. I’m also her only support, and now I’ve abandoned her in time of need. She would never, EVER want me to think that way, but it’s how I feel. The feelings of anxiety haven’t gone away, they’ve just been pushed to the back, while I distract myself in various ways. And now, there’s a heaping helping of self-induced guilt on top.
I feel so lost. I’ve never felt like this before, just completely without direction. My poor husband has been such an amazing leader through all of this. But he can’t help me where I need it most, with my parents and sister. He can’t give me more hours in the day, less anxiety, more guarantees. He suggested moving us on onto the same property as them. And as much as I think that’s the absolute best idea for taking care of them, it is not what I want. I can’t even make myself want it. I want my own life. I have never done anything without considering how it would affect my parents and sister, and it makes me so tired. I can’t even pray, because I no longer have words. This is the first time I’ve written in months. I find myself simply praying, “Lead me, Lord. And make the path obvious! Because don’t have the brain power to find it otherwise.”
So today, through God and His use of one of my besties, He led me. Elizabeth and I went to one of the very few residential facilities, in our area, for people with profound mental retardation today. I didn’t pray about it. I guess somewhere inside me, I knew it was not going to be a fit. “They won’t take someone as low functioning as Amy. The wait list will be 17,000 people long.” These are the thoughts that were running through my head. I was just waiting on the “no.”
I was blown away with what God had in store for me today! Blown. Away. Elizabeth and I talked with the coordinator for more than an hour, as she anticipated and answered every question. She regaled us with funny stories. She loved her job. Then, we toured the day program, where we discovered clients of all abilities, happily engaged in activities with staff. It was a community.
The houses felt more like sorority houses to us, each room decorated by its residents. Everything was catered to the clients. It looked like a bunch of college girls lived there. There was lots of pink, lots of pictures. It smelled nice. It was their home.
We knew immediately it was the right fit for Amy. But what about the wait? Clients are placed in homes, not based on their physical abilities, but on their personalities. That’s when we realized, they don’t see these people like clients. They see them for who they are – unique people, humans with their own personalities. I can’t say that even most family members see them that way. It was beautiful.
Based on where they think Amy will fit best, it looks like a potential two-year wait. Two years. That’s it! Not 10, not long after my parents are gone, but soon! Will the time in between be a struggle? Of course, it will be hard. Everything is getting harder, not even remotely easier. But things always seem easier when there’s light at the end of the tunnel you’re trudging through. The most important part of this facility is I truly believe my sister will be happy there. She may not be able to communicate like I do, but she is extremely social and loves her peers.
I am so thankful that God led me, when I could barely put one foot in front of the other. I am so thankful for my friend and her support. I am immensely thankful for the facility we found. All of you caregivers out there, I am thankful for you. I see you. I feel your fears, your pain. You are not alone.