What It's Like Growing Up With Disabled Parents
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What It's Like Growing Up With Disabled Parents

Real talk from someone who has been there.

What It's Like Growing Up With Disabled Parents
He Wins Financial

I just want to start off explaining my situation so you guys know what's up and where I am coming from. My mom was diagnosed with dermatomyositis and rheumatoid arthritis when I was 5 years old and passed away when I was 16. My dad was diagnosed with Parkinson’s Disease when I was 14. I just want to make it known that I don’t want any pity at all. I was not the one suffering, and my parents never accepted any sort of pity themselves. My goal of writing this is to let people out there know that they are not alone.

There Might Be People Who Bully You Because Of Your Parents’ Conditions

I was never ashamed of my parents’ conditions, but there were always people who thought it was cool to make fun of them for it. At least once a year, there was someone in my class who thought that it would be a good idea to trash talk my mom when she walked into the school, restaurant, store, etc. There were people who made fun of my mother’s hands because they became discolored and the joints started crumbling inside, which is a common symptom of the dermatomyositis. There were people who made fun of my father for shuffling his feet to walk places. If this ever happens to you, just keep in mind it’s no reflection of your parents or you. It’s a reflection of the person's character.

Don’t Mind The ‘Do-Gooder’ Parking Spot Police

There will be assholes who try to cover up their anger issues with false humanity. There are people who yelled at both my mother and father and me, as the driver, on multiple occasions for parking in the handicapped parking spots because their disabilities were not as obvious at first glance. It happens a lot more frequently than you would think. Don’t take it personally.

You Will Probably Do Nurse-Like Activities

Having disabled parents makes you realize how much work nurses, personal support workers and home support workers do. I put my mother’s socks and shoes on every morning for 10 years. I got called to help my mom and dad get in and out of bed, grab water, organize all their medications, etc. up to 50 times a day. I learned how to change oxygen tanks, inject insulin, etc. Such is the nature of the beast.

Don’t Feel Ashamed If You Have To Ask For Help

We had nurses and PSWs come in a couple times a week to help when I was in high school. They cleaned, set up my parents’ pills, etc. My mother died when I was in high school, so it was just me and my dad for a while. His condition was not so bad until I went to college, and then it started deteriorating quickly. I was going home every Friday, staying until Monday, then going back to school. Sometimes I was even staying home during the week to make sure he was okay. We still had home support workers, but there was no one there during the night. One of my dad’s 10 brothers started staying with us to help out when I was gone. Just know it’s totally okay to ask for help. I always felt bad not being there, but my dad would have never let me stay.

There Might Come A Time When You Have To Resort To A Long-Term Care Facility

My father’s condition became so bad that after Thanksgiving Break my sophomore year, he got stuck in a chair from the Saturday I went back to school until Monday morning when the home support workers came. There was supposed to be someone there when I left, but they never showed. There were times when I would come back from school to find no one was home. I would call around to any of the local hospitals until I found him. Eventually, a long term care facility seemed like the only option for him. I want to let you know that sending you parent to a long-term care facility is not admitting defeat. Sometimes there are things that you cannot provide anymore, like constant supervision, or provide medical services, like feeding tubes, oxygen, or physiotherapy. It’s okay that you cannot do it yourself, I personally felt ashamed that I could no longer take care of him myself, and it took me a while to realize that it was out of my hands.

You Might Have To Get Used To Frequent Scares

My father was in and out of the hospital 9 times this year alone. There was at least 5 times this year that the doctors told me he was unlikely to make it. My dad is a fighter, he’s been through a lot lately, and still keeps pulling through even though they’ve counted him out.

You Might Not Feel A Connection To Them After A Certain Point

This seems to be a common problem for people who know really sick people. Sometimes dementia, Alzheimer’s, advanced Parkinson’s, post-stroke complications, and comas make it hard to connect with a person. “They are still them, but not really them,” was a common thing I heard from people in similar situations such as mine. It is hard. I know people who won’t even visit because they can’t take seeing their relative in their conditions. Sometimes people feel like the soul of the person they connected with is gone, it’s just the body that is there. I want to let you know that if you feel this way, don’t feel ashamed. It is common.

You Might Have To Make Tough Decisions

I am not the executor of my father’s estate or his power of attorney. I would not wish that power on anyone who has to make decisions like this. My uncle told me that it was my decision if we should get a DNR (do not resuscitate) and he would support it as the executor. It has come down to it quite a few times, and thankfully my father has pulled through, but with a lot of damage to his body. I am planning to become a doctor, so I know how extensive the damage is every time they have to run the full code on him. It’s hard to decide because he is still talking (it’s gibberish, but it’s something) and awake, so to ultimately make a decision that would kill my dad is not just hard, it’s excruciatingly painful. I don’t want to do it, but at the same time, he’s in so much pain, that it seems like it would be merciful to choose the DNR at some point. Nobody wants to be the person who decides who lives or dies. I want to warn you, it might become a decision that you have to make.

I hope this article helped you in some way. I know that it is not the happiest subject to talk about sometimes. I want you to know that you are not alone, and that you have the strength to keep on carrying on.

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This article has not been reviewed by Odyssey HQ and solely reflects the ideas and opinions of the creator.

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