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Living Independent Concerns

Wed, 01/30/2019 - 21:39
Hello, I'm new this site but not new to seizures. I grew up with them for more than half my life now. My question comes from the fact that my mom has recently started talking very seriously about getting me a caregiver when she is gone. We are in the beginning stages of both writing our wills, and she wants me to be covered and saved should she go first and no longer be able to take care of me. Please keep in mind I'm in my mid 20s and can do a lot within our home on my own. My seizures are a rare type triggered by the sun. Outside is where I struggle most. My only indoor issues are memory problems and lack of vision from past seizure brain damage. I understand where she's coming from, but if she gets me a caregiver it almost guarantees I'll never be independent and be able to live the life I want to live. It's one thing when she helps me, cause she's my mom and I trust her and she's handled all my medical stuff since this all started when I was a child. I understand she doesn't want me living alone because something could happen or I could forget to take a dose of meds or to walk my service dog etc, but she then automatically jumps to the thought of a caregiver that I really don't want. To me a caregiver sounds like a prison sentence. A full time babysitter even though I'm a highly capable and smart beyond my years, young adult. I'd much rather move in somewhere with my best friend and have a bachelorette pad with her keeping an eye on me but not helicoptering like a caregiver would. The only issue with that is my best friend lives in different state currently and one or both of us would have to move for that idea, if she were interested in it at all (I've yet to ask). I need advice. How can I explain to my mom I don't want a caregiver, I don't want to be trapped in the packing wrap bubble I've been put in for years; I want to live with or near at least my best friend, I want to travel and see the world and not let my disabilities stop me from fulfilling my dreams. If I get a caregiver I'll be trapped in my apartment forever with a helicopter I don't trust. I believe I'm capable of far more than she gives me credit for, she's just a tad of control freak mixed with overprotective mother, and I get, I don't blame her at all for thinking about it, she just wants what is best for me, but... she never asked what was best for me in my opinion. That's what I'm struggling with pointing out to her, without hurting her feelings but also so she might actually consider it and not shrug it off entirely. If she let go of control on some things, just a few bills and taught me how to do it, I just know I would figure it out eventually and it'd be one less thing for her to worry about. Then maybe she'd see I don't need a caregiver nor do I want one. I'm just tired of "living in my cave(bedroom)" cause it's safe. I want to live as freely as possible. Without a caregiver. Please any suggestions on how to explain this to my Mom?

Comments

I would suggest that you have

Submitted by Jazz101 on Fri, 2019-02-01 - 19:53
I would suggest that you have a conversation with your mom and your neurologist about it. That said, the conversation with your mom has to be one of those "meet her half-way" conversations because parents are unique. Find out what it is that she fears most about you being alone. I mentioned fear because it is real even if it looks minute to someone else; real to the individual who is facing it. I would probably say something like; "Mom, I know your concern for me on my own has to be significant. After all, you are probably seeing the things that you feel can go wrong and it can't be fun imagining how I would deal with it." Then go on to say; "Can we talk about some of those concerns?" [Make sure you are a listener when she speaks].There is a great article I had read in the NY Times, I just can't find it now, that speaks about being too fearful of Epilepsy. Here it is. It's addresses being too guarded and how that can affect someone with Epilepsy.https://www.nytimes.com/2004/11/16/health/epilepsy-fear-not-or-at-least-fear-less.htmlIn it you'll see a study conducted by Mayo Clinic, currently number one in neurology and neurosurgery. Take a read.  One of the paragraphs reads this way; "Dr. So said that being too cautious carried its own risks, possibly resulting in 'social isolation, physical inactivity and psychological dependency'."Speak with mom about 20, your age, and when she was that age. Sometimes when a parent goes back to the age of their son or daughter they better understand where the son or daughter is coming from. In terms of the conversation? Try not to guess how it will go. Just relax and see where it goes. Best Regards

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