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Thread: emergency plan if your primary caregiver gets sick or injured?

  1. #1

    emergency plan if your primary caregiver gets sick or injured?

    I'm c5/6 now 36 and my primary caregiver has been my mom. I've realized that she wont always be there and I have got to look at the bigger picture.
    I have no idea who to call or where to start for a backup caregiver if there's an emergency! Is there an outline or guide I should use for getting the info?

    any help is appreciated!

  2. #2
    We have a caregiving forum you can check out.
    http://sci.rutgers.edu/forum/forumdisplay.php?f=21

  3. #3
    The first move it to get away from having only one caregiver, esp. your mom. Let her just be your mom...and let her retire from being your only caregiver. Are you eligible for IHSS (I see you live in CA)? If so, you need to apply for services, and have an evaluation. Your local ILC can help you with the process. Then you need to go about advertising for and recruiting several PCAs. It is much easier to hire part time help than full time, and you can ask your part time interviewees about their availability to expand hours for emergencies during the interview process. Ask the ones you don't select, but who are still acceptable if they are interested at all in on-call work.

    Your mom can help to train your new PCAs, and help you set up a system to track their schedules and hours (IHSS would require this anyway). You might even start thinking about getting your own place and really becoming independent. Do you do as much of your own care as you can? Have you got your care organized so that it can be done efficiently in as short a time as possible in just the AM and evening, without needing care in between? This will make it more possible to manage with limited PCA care.

    Good luck. Many here have done this, and I hope can provide you even better advice.

    (KLD)

  4. #4
    Quote Originally Posted by KLD
    You might even start thinking about getting your own place and really becoming independent.
    Since it was brought up. It has crossed my mind, what would I do in case of emergency if say the house caught on fire and I'm a C5/6 who can't transfer to evacuate immediately?

  5. #5
    You need to have a phone you can use at all times if you are going to be alone. Be sure you have quick access to 911.

    Call your local fire department, and talk with them about what they have set up for tagging certain addresses. Many (such as my local fire department) now have a computer system that can tell them special information about an address. They use it primarily so they know about commercial establishments that have dangerous chemicals on-site, but they have also set it up so that if they get an alarm on that address, it flashes into up on a screen either in the station, or sometimes, actually inside the fire truck. This can include the information that a person with a mobility disability lives at this address.

    Also check to see if they have an alert system for windows for childrens' bedrooms. This is a sticker you put in the window. They look for these, and try to evacuate these bedrooms first. We used to recommend the use of a wheelchair accessibility symbol for this, but when there were a series of robberies targeting more vulnerable PWD who had these stickers showing, we stopped recommending this.

    Of course if you are in a house, try to make sure you can open exterior doors, and try to have more than one route of exit so you can get out if you are up in your chair as well.

    In the VA in our region, we are required to provide fire safety information to all our SCI veterans each year. This is due to a tragedy where two veterans sharing a home (and their two attendants) died in a fire a number of years ago. They had bars on the windows and doors that had no quick releases, so even though the fire department got there quickly, there was significant delay in getting in and all occupants died.

    (KLD)

  6. #6
    Senior Member alan's Avatar
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    I'll have the same problem as the OP someday, and we're trying to figure out how I'll handle it.
    Alan

    Proofread carefully to see if you any words out.

  7. #7
    Senior Member zillazangel's Avatar
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    We have experience with this, which was of course, the hard way.

    Yes, do pop on over to the caregiving board and ask us there too (but don't kill him for cross posting KLD, lol). Too tired to post more now ...
    Wife of Chad (C4/5 since 1988), mom of a great teenager

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