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Living as a Caregiver

What Life Looks Like for a Caregiver. Do I have a life?

This picture was taken in rural Arizona on a rare foggy day. It was the hardest day of the year, but at least it was beautiful.

I have been a caregiver to my grandmother for almost eight years. Back in my late teen years, I saw the signs, I giggled at the silly things she did, I blew off her strange behavior and mood swings. But I never imagined that I would spend my 20s tethered to the family home, missing out on some of the most important experiences of my life for almost eight years straight.

My grandma does not have "old-timers," she is not forgetful, she doesn't think Bill Clinton is still president. My grandma has FTD (frontotemporal dementia), a deterioration in personality and behavior. Being one of her caregivers every day for so many years, she has become all I know. I have not made any new friends in the last eight years. I have not gone clubbing, hiking, or camping. Caring for her is a non-stop, 24/7 job that warrants zero downtime. I cannot go to school, I cannot go out and get another job, I'm having a hard time even keeping my relationship afloat.

But, I chose this. Back in 2011, my grandparents moved from Michigan to New Mexico for Grandpa's work. Grandma was already showing some signs of FTD, but she was still functional at the time. I stayed up in Michigan, him-hawing about whether I should go with them or stay. That is, until grandma called me one evening in shambles; she was having a meltdown. She ended up in the ER with a fever due to a UTI. I knew right then that I should go and help Grandma.

When I arrived in Albuquerque, I was greeted by my grandpa and a shadow of who my grandma used to be. This version of my grandma was not the woman that I knew before she left Michigan just one month prior. From then on, it has been a very hellish experience filled with sleepless nights, endless days of fear and anxiety. My grandma became violent, she heard voices, she screamed at us, she even tried to run away with an empty suitcase. Now, she has no idea who anyone is, she is completely unaware of her surroundings, she does not speak, and somehow is still capable of standing up and wandering the house.

I do not get to do much living as her caregiver. Though I chose this, I'd never choose it again. I am now 26, I have no friends, no social life, no life what-so-ever. Being a caregiver is being a giver of self. It has been the biggest sacrifice I have ever known, but I truly believe that this was the only option for her, and for myself. I love my family so much, I could not live with myself if I wasn't here to help; the guilt would have eaten me alive if I hadn't committed my life to this.

Having any kind of "normal" life just doesn't fit in this reality. We all have something that keeps us up at night, I'm just glad it's not my guilty conscience. It's just Grandma.

Please, don't get me wrong, I am a happy person, I love life, and I am so grateful that I'm not doing this alone. My heart goes out to those that don't have help, or don't have anyone at all. My mother-in-law is a therapist and she has said before, "A family member suffering from dementia is THE worst thing a family can experience. But, you guys do a great job!"

This article is not about doom and gloom, it is simply another reality that most people don't get to see. Sometimes it feels like butterflies and rainbows, and other times we would rather go run with the wolves. I have made peace with the things I have missed, and I know for certain that I have plenty of time left.

To the all the caregivers out there: You are doing this for your own reasons, and whether they can tell you or not, they appreciate you. You are doing what most can't, that is something special, YOU are special! Try to take care of you, too. You cannot pour from an empty cup. You are not alone, there are so many others out there that share your pain, anger, and joy. It doesn't get easier, but you do get stronger.

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