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Solar_Eclipse

806d

my family often makes comments along the lines of “we won’t be here to take care of you forever, what then?” they’re still coming to terms with how disabled i am and how hard it is on me and the fact that i will never be able to live on my own or support myself alone. it’s a scary thought for me to think about losing my mom and not having her there to help me. and i currently don’t have a backup plan. it’s them or no one, because no one outside my immediate family (and i mean immediate, even my siblings are 90% in the dark) knows the extent of my disabilities or even that i’m disabled at all. my concern isn’t homelessness (i have plenty of family that would let me move in), my concern is actual support. my mom reminds me to take my meds and make appointments, makes sure i’m awake for said appointments, keeps track of my food intake, etc and i just don’t know what i would do without her.

Top reply
    • JustRachelle

      806d

      I say just take this as a wake up call.. start now with trying to monitor things on your own with her assistance., use apps to remind you to take your medication, appointments and food intake.. start journaling to cope with some of your feelings as a means of support.

    • Solar_Eclipse

      805d

      i want to make it clear that i wayyyy oversimplified what they do for me. i have to have a caregiver. i can never be on my own. it’s not an option. an example of this, i am in bed at 4 am and realised that i haven’t eaten in over 24 hours because i didn’t see anyone eat, i didn’t think about it, i don’t get reliable hunger cues, etc. living on my own and taking care of myself alone is not and will never be an option for me. even when i’m having a good day or two, i turn off medication reminders and then forget about it, even though my medicine is right there or i walked over to find it because i get distracted very easily and have intense brain fog and memory loss. i think it’s also important to note that my mom is a cna and is trained to care for people like me, it just never occurred to her that she would need that training for her own child. the only reason they’re concerned about this is because they know i will have to have someone else care for me after they’re gone. i don’t mean this in a bad/mean way (because i could’ve worded this post better) but telling me to just be more independent isn’t an option for me. but i am happy that other people seemed to find that advice helpful.

    • Florina

      806d

      You aren’t alone in this. I have friends that I’m a fall back plan for. Like the comment above, my parents made me be independent and learn how to do so. Of course they’re always there to help if I should need it but always enforced independence because they know one day they won’t be here and want me to be able to at least mostly care for myself. My therapist and psychiatrist also have helped me with this as well. I also would recommend seeing a therapist that can help with it if you’re able to do so. I hope you’re able to and I can help with resources if they’re needed

    • KitKat723

      806d

      Honestly i really understand that. My dad early on was very adament i take care of this on my own, and he made me. He helps financially but that's about it. I have to keep track of all my doctors and my care plans and it is hard. Honestly my saving grace has been my therapist, she has helped me keep track, checks up on me, and helps me find case management and i'm sure care management when i get there. I suggest finding a therapist who undsrstands disability and have them help you find people to help you manage if you can. That may be financially not possibpe for you though and i'm sorry if that's true. I guess i'm lucky in that way. I hope this helps at all, at least know that you aren't alone in this

    • JustRachelle

      806d

      I say just take this as a wake up call.. start now with trying to monitor things on your own with her assistance., use apps to remind you to take your medication, appointments and food intake.. start journaling to cope with some of your feelings as a means of support.

☝ This content is generated by our users and it is not a substitute for professional medical advice. Please consult with your physician before making any medical decision

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