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Thread: Where are all the Caregivers!

  1. #11
    Senior Member kate's Avatar
    Join Date
    Jan 2002
    bellevue, wa, usa
    jk, could you please check your private topics?

  2. #12
    Thank you all, I know where to turn when things seem tough, I know we all have our days and moments, Maybe some are moving on, but we never really do, we are in this for the long haul, I just look at this forum for insight on how other caregivers cope, or even ideas on where to get help, you have all provided some great hope for me and my family, and i hope this thread also helps others in simular situations, thanks again and I will keep you all posted on how things go, and would like to hear and see more on this thread on where caregivers can turn.

  3. #13

    In response to your original post about the lack of activity on the Caregivers Forum; the caregivers are too damned busy and burned out to post.

    Hee hee. I missed a lot of the previous posts to your question. I've been busy. But, your point is well taken. You sound like you have a busy schedule, far busier than my own that involves caring for a two-year old and a fairly independent quad wife. Even with that little of a burden, I feel exhausted both mentally and physically.

    Everyone will tell this, and I'm sure they have, get some help. This situation will consume you and destroy you if you don't get it under control. Explore the insurance (Medicaid, private carriers, etc.), lean on friends and family, do what it takes. You can do this alone.

    You must get some help. It is fairly well documented that you will become burned out at the pace you describe.

    Sorry, must go write a letter to the insurance company.

  4. #14
    it sounds like you and your family are doing the best you can at this point. Just know that Jackie is right when she says things slowly get better. I also find that I have more and more personal time for myself to read, etc. Hopefully your son will recieve some of the services he has been denied before too long.

    Our most vexing problem is Steve's bladder capacity. We have to cath every three hours around the clock. During the day, he can do this, but at night it is easier for me. One of the best things about a cure will be when we can actually have four hours of sleep in a row :&gt

    Russ Byrd

  5. #15
    My husband is a para and I am his sole caregiver. Since coming home from rehab last April, he's needed less and less care, but there are still routines to follow, and all this is in addition to holding down a full time job (which we desperately need because he's on my insurance).

    I'm lucky that my boss is flexible and lets me keep late hours (9:30A-6P). I get up in the morning and fix breakfast for my husband and we watch the morning news while we eat. I go to work and usually come home for lunch. Sometimes he gets up and into his chair and fixes lunch for both of us; sometimes I bring something in from outside. Then back to work. When I get home one or the other of us fixes dinner, I wash catheters every other day or so, do laundry three times a week (lots of linens and bedclothes to wash). Because our bathroom is so very small, my husband cannot use the shower in there I give him what I call a "spit bath" every weekend, except once a month we check into a local hotel with a roll in shower for the weekend and he takes a nice shower and we have a nice time in the hotel. It is all that our income will permit. Insurance pays for no bathroom renovations or shower chairs. (Those are considered "convenience" items, what a load of horse hockey!)

    He's gaining independence but there's still a long way to go. I believe he needs to find something to do around the house to feel useful again. I've encouraged him to get on the computer, but he wasn't much of a computer person before his injury, so that's not likely to happen, as far as I can tell. We are looking for a piece of property on which to build our own home so that it will have everything he needs to function properly, e.g., roll in shower, lower sinks, lower kitchen cabinets, etc.

    Life is a shit sandwich. Eat it or starve.

  6. #16
    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.

  7. #17
    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?

  8. #18
    Junior Member
    Join Date
    Apr 2005
    Carlsbad, CA, USA
    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.

  9. #19
    Junior Member
    Join Date
    Nov 2003
    Moreno Valley, CA, USA
    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.


  10. #20
    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.

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