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Where are all the Caregivers!

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    You can find good caregivers by searching on the internet. There are some websites providing information about caregivers or care giving facilities in your area. I found such a place in California using the uCan Health Caregiver Directory. : <A HREF="" TARGET=_blank>[/URL]</A>. It is free and you can post or read messages discussing the care giving facilities of your interes.


      Its good to see some activity here inthis section, zhongshu, thnks for the info i will look at the sites, seems most of any thing i can find is for people over 18 and thats where I get stuck.

      jonimueller, thanks for letting us caregivers see some other insights as to what we go thru, sounds like you and your Husband work well together, Im waiting for my son to turn 18, then we may be eligible for some supportive services, we checked with the office of the aging, they supply help, have you looked into getting any help?


        jk jr

        I am a mom taking care of my son who was injured a year ago. He is C6. My son does not self cath and I am his primary care giver. I tried to work part-time at home after Nate's injury. I failed miserably and had to quit my job.

        My son does receive SSI. It was a pain in the a** to apply for it. I was told that quadriplegia is a "presumptive diagnosis" and does not need to go through the waiting process for medical determination of disability. I know you don't have time for paperwork, but if my son is getting it, yours should too.

        Let me know if you need some help with this.


          Hi jk jr,

          I am a paraplegic living with my sister who is also a busy single mom of 2 little boys ages 9 and 3. She has to monitor her energy since she is coping with epilepsy medication she's taken since childhood. I am obviously more independent that your son who is totally dependent on you.

          I've run into roadblocks myself since I really can't afford a caregiver for more than 5-10 hours per week and have to pay a huge share of cost for using county and government home support services. However, I can tell you of the things my sister and I have done that is working so she can get relief.

          I. You must remember that aside from your son, your next priority is to care for the father of your son. Otherwise your house is built on a foundation of cards, and there may be dire consequences should anything happen to you. You need caregiver relief on a regular basis so as not to burn yourself out.

          II. Call a family meeting and get more participation from family. Go over your family priorities. Get your daughters to brainstorm on how they can do more with chores and share the load so you can focus on those priorities. Ask them to think of what it would be like if you were not around and they had to figure out what to do and care for their brother. Have a plan and schedule that they can follow and implement whether or not you are home. Have regular family meetings about this to keep them involved with any changes that are going on.

          III. Hire either a parttime or fulltime caregiver. If parttime, get them to come mornings and evenings for your son. They could also stay overnight for several days in a row, say during the week while you are working. Get your daughters to do more of the chores when the caregiver is not around, so you have time and energy for yourself, your business and coaching. I'd suggest private pay rather than using an agency or a registry; they charge way too much. Go to a local church and community organizations and ask for volunteers for caregiver relief or offer some kind of compensation or exchange. Most church organizations have some kind of community outreach program and/or healing ministry. Get the word out with friends and associates. Check out the local Pennysaver, newspaper ads.

          IV. Do you have neighbors and friends who can help with carpooling, errands, yardwork, other household chores?

          V. Care for yourself. I can't stress this enough. It is so important for a family caregiver to set priorities, limits and have a realistic plan. You will also be better able to handle the emotional stress by doing what you would normally do if your son was mobile and healthy. Things you can do to support yourself: a healthy diet, exercise, spiritual practice, having some kind of support network, pursue your interests.

          Anyway, I hope this helps. Good luck to you.



            Thank you for the info and all vary good ideas, its nice to see some people look at this section, it used to get alot more activity, we are really close, I see you are in Moreno Valley, Im in the lake Arrowhead area, my family is not around and my son has gone to school here since Kindergarten, so he is a senior now, most people think we need to move down to the city and it would be easier for me and him, but I wanted him to finish school with the people he grew up with and we are almost there, thank you again forthe support and hope all is well for you and your sis.


              Hi jk jr and other readers,
              I am a university student at present, and was hired two days ago by a 30 year old man with a SCI that has left him with limited speech, and low function in his right arm, with the rest of his limbs being paralyzed. I have my first training session tomorrow morning and don't know what to expect... anyways, on to the reason for my post: I would suggest for those having difficulty finding caregivers to try contacting the "pre-med club" at your local university/college. most campuses will have such a group that meets regularly to provide support for each other in preparation for application to medical school... I expect that someone in the campus administration should be able to give you at least an email to contact someone in such a club. If other pre-med clubs are anything like the one I am part of at my university in Canada, they should be full of young caring students dying to be active in some aspect of patient care, both for medical school experience, and out of a genuine love of people and desire to better the lives of others. To us students, we simply do not know where to look in order to finding experience at the level of being a caregiver. I had to scour the local newspapers for over two weeks at the beginning of this summer in order to find this man's ad for wanting help. And it was the only ad of it's type. I am sure a simple plea for help from the pre-med club could also find you willing volunteers.
              Another possibility would be to phone up local churches and ask if an ad could be placed in the Sunday morning bulletin.
              I am in deep admiration of all of you caregivers who give so selflessly of your time and life for your charges. My family has it comparitively easy with a disabled sister (non-SCI) who is undiagnosed but has symptoms similar to cerebral palsy, but requires little extra care, aside from an personal assistant in school, and the occasional suppository.
              As a final note... wondering if anyone could give me some hints or important advice that would be useful for me to be told about Spinal cord injuries as I have my first exposure to working with it this week.
              Thanks, and blessings to you all


                Hi jk, I'm a c67 quad 2 yrs post and used to be in your same situation. My Dad was my sole caregiver. Then I went back to college 6 hours away. You'd be amazed what a quad can learn when its necessary. I self cath and know several other guys that are c5 quads that do as well. Its weird at first, but once you've done it sucessfully, its simple. Has your son ever transferred, if not, get a sliding board and have him practice. These are attainable tasks that can be done with some definite practice. It will also give your son some independence. Practice is the key. Good Luck!!
                Hope is a good thing, maybe the best of things, and no good thing ever dies...


                  Ozzy I hope things work out with your new job as a pca. Thanks for posting. [img]/forum/images/smilies/smile.gif[/img] Maybe after you get started working, you could provide feedback on issues (good/bad).
                  I know I'd appreciate it. Thx.

                  Take your hands off my MOJO [img]/forum/images/smilies/biggrin.gif[/img]