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Thread: how can I increase my independence?

  1. #1
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    how can I increase my independence?

    I am a C-5, C6 quadriplegic (complete) for almost 11 years now. My living situation is getting very frustrating. Currently I went with my mom, but we argue a lot and I am just getting very tired of arguing. Her and my dad got a divorce four years ago. Currently my situation right now is that she works Monday, Wednesday, Friday, at night and then the weekends. When she is not there at night, my dad comes over (he doesn't live far, only a mile away). So, the only days I don't see my dad are on Tuesday and Thursday. My mom is still upset from the divorce, but is constantly just being mean and doesn't know how to accept it. We argue a lot because of this. I also just turned 27 and am really wanting to get more independence.

    If it were up to me, I would get my own place and just have care attendants take care of me for what I need, but the only thing that's stopping me from doing that is I know no matter how much me and my mom argue, I will never get the level of care that I get from her or my father. However, on that note I was wondering if anyone knows what it is like to be working with attendants. My biggest concerns are bowel program and shower, and those things is what my father does for me. My mom gets me up in the mornings and puts me into bed on Tuesday and Thursdays.

    There is a house for sale that is right by my father's house and it is a ranch. I could buy it and buy it for myself, but I just don't know how the whole attendant care thing works out.

    Is anybody in this situation? If you were in the situation how did you get through it? Any tips?

  2. #2
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    i'd get out as fast as lightning. i know many here have aides and it goes well for them. i have an aide once a week and i do my own bowel/bladder. i know some use reachers and other tools to help facilitate bowels. but i'd start looking at agencies or start the process of hiring aides if u can afford that (many use craigslist but there are different programs out there) personally i think i get better care than my mom gave me as i am not stuck in an emotional stronghold with her. it wears on you.
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  3. #3
    Larsen, I can't reply as to the caregivers/attendants, but am sending good thoughts/prayers for your situation....take care!

    Teena

  4. #4
    Senior Member flicka's Avatar
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    Quote Originally Posted by Larsen View Post
    There is a house for sale that is right by my father's house and it is a ranch. I could buy it and buy it for myself, but I just don't know how the whole attendant care thing works out.
    Honestly, if the house is a good deal and not something that would turn upside down on you, and you can afford it, buy it. Since your dad does showering & bp now for you, maybe you could ask him if that can continue for you as you get started living alone. If the care your mom currently is doing doesn't require much intimate work I would think you wouldn't have too much trouble hiring people. With your dad as back-up, I think it woud be more comfortable to get used to pa care.

    Really, if you plan to move out on your own someday, and your dad plans to stay in his house for awhile, I don't think you could find a better situation than this. Good luck!
    ____________________

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  5. #5
    Senior Member rdf's Avatar
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    I agree flicka.
    Quote Originally Posted by flicka View Post
    Honestly, if the house is a good deal and not something that would turn upside down on you, and you can afford it, buy it. Since your dad does showering & bp now for you, maybe you could ask him if that can continue for you as you get started living alone. If the care your mom currently is doing doesn't require much intimate work I would think you wouldn't have too much trouble hiring people. With your dad as back-up, I think it woud be more comfortable to get used to pa care.

    Really, if you plan to move out on your own someday, and your dad plans to stay in his house for awhile, I don't think you could find a better situation than this. Good luck!
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  6. #6
    Senior Member NWC4's Avatar
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    Hi Larsen,

    I agree, but look at other houses first before buying the 1st one you look at.

    I'm a C3-4 complete and moved out of my folks house at 21 after being injured for 15 months. I had live-in care givers for 10-11 years and hated it. I've had live-out care for the past 18 years and greatly prefer it. Usually I have 3-4 folks working for me, but have had only one the past few years. Always try and have an aid depart on good terms and ask if they would mind working on occasion as back-up/fill-in. Do the same with those you think could work while interviewing, but decide not not hire. Try to keep family as last resort.

    I pay people by the shift rather than by the hour. I give them an estimate of the amount of time they should expect to be working and then once they are trained and become efficient they can usually leave "early". Just make sure they're taking care of business. This way keeping track of hours worked is one less pain and possible disagreement.

    Treat people fairly, show them respect and don't sweat the little stuff, but also don't let the little stuff slide into the stuff needing to be done and done right!

    Blessings
    Last edited by NWC4; 06-06-2010 at 01:06 PM.

  7. #7
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    thank you all for your input. I'm going to take it all into deep consideration. It's kind of weird, my parents are taking care of me for almost 11 years now and I feel guilty for wanting to be apart from them more, but at the same time I think it will make our relationships healthier. The only thing that really scares me is finding really good care, because (in most cases) no one is going to take care of you as good as your parents. I think the biggest thing for me is making that switch from my parents to somebody else. My brother will be living with me. Me and him get along very well.

    Thanks for the info, and if you guys have any other information such as... how to find a good caregiver, please pass it on. I don't know if I would be better off paying someone privately or going with an agency.

  8. #8
    Hey Larsen

    I'm a C-6 quad that got hurt when i was 21. At the time of my injury, i was living on my own in an apartment, but moved back in with my mom/her husband after leaving the hospital. For maybe the first few months i didn't mind it.

    Not long after i just starting feeling like i was 10 years old again by living at my mom's again and them doing so much stuff for me. I did though have a PCA for 3 hours each morning Mon-Friday while i lived there. I always did feel awkward having family do my personal care compared to a PCA.

    Anyways, my mom's husband got offered a job in Arizona and she hated the Wisconsin cold, so they wanted to go there but were concerned about me. I did some checking around and quickly found a HUD apartment available which i took.

    Long story short, once i was on my own again along with a younger daughter at the time who often came over, i instantly felt better about myself. Being on my own also forced me to figure how to do countless things for myself that when i lived with my mom/her husband, i'd just ask them to do it or they'd offer before i even asked. I found out that i had been relying on them way to much to do things for me that i could figure out ways to do on my own once i put my mind to it and then repetition made those tasks easier to do.

    Around 15 plus years later i still have a morning aide for 2-3 hours. I can get myself ready on days here and there when my aide can't make it, but i keep the aides because it's simply easier on me to have them help in the morning. Plus, they help prepare meals for me so that later on i only need to take them out of the frig and heat up. They also help by doing my laundry and clean up some. Once they leave though, i'm perfectly able to get by on my own and have been that way a long time. If instead i had stayed with my mom/her husband longer, it likely would have just delayed becoming so much more independent because when i lived there, i rarely had to come up for solutions as to how to do many tasks on my own since they'd help whenever i needed anything.

  9. #9
    Agreed with most here, move out. Independent city is where you want to be. Yes, you can find aides or make continued strides in self-care, i.e. colostomy for bowels, suprapubic for bladder, hand surgeries for grip/strength. Not easy but doable. Your parents won't be around forever, best to learn how to be completely self sufficient. Good luck.

  10. #10
    flicka, TheDuder and others give great advice! I think there is info at the "sticky" on top of this subject "caregiving" that has info & tips on the process of hiring and training aides.

    Also, if you use the Google search "CareCure forums at top of webpage" you can also find more information on this subject that has been posted here.

    Larsen, I think you are correct about the link between you gaining your independence, hiring aides, and healthier relationships with the rest of your family. Best wishes on your journey towards independence, I believe it is a completely normal and healthy desire.
    Last edited by Still Learning; 06-05-2010 at 01:35 PM.
    The IceDragon Avatar best represents my constant Freezing yet Burning Pain...not to mention all the other sensations that come with neuro pain

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