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Thread: Caregiving to my c5 c6 husband

  1. #21
    Senior Member Van Quad's Avatar
    Join Date
    Mar 2002
    Vancouver, BC, Canada
    Jennifer, I'm alone all day from 8 a.m. until suppertime. The key is preparation:
    -Pills in 35 millimetre film canisters at a height that I can grab with my teeth.
    -sandwich and apple quarters that I can scoop up with my open fisted, spatula quad hands off my plate with plate guard.

    I am also alone from 10 p.m. until 6 a.m. and again the key is preparation:
    -an environmental control system that allows me to use the phone, operate television/DVD, and open my front door. All of this is done with one switch using my forehead/nose/chin.
    -a sports water bottle beside me should I get thirsty during the night

    This is just to show you Jennifer that there are degrees off independance. Making him feel uncomfortable by bringing your feelings up is a lot better than having you disappear with his kids due to divorce.

    Your needs are just as important as his.

  2. #22
    Moderator jody's Avatar
    Join Date
    Jan 2004
    east o the southern warren
    oh, sweetie, welcome to carecure. glad and sorry to meet you. yes, please join the caregivers forum. and can you see about applying for any kind of help as fare as home care goes? Betheney has some insite on quad hands, and such a way of saying what is important to know. you will love KLD, the sci nurse. you can ask anything and you are bound to get some kind of usefull answers. They have a womens only forum too.
    and isnt it just an insult to the spirit what caused it all? like running with a pencil. you are not alone. How freaky existing can get..... you have many prayers today to heal your sad heart. all of us who pray have breathed one for you.
    Last edited by jody; 06-24-2009 at 06:00 PM. Reason: spelling err

  3. #23
    Senior Member Jeff B's Avatar
    Join Date
    Sep 2003
    Ontario, Canada
    Here are a couple of threads with ideas to help him working towards being able to at least be able to spend some time alone to start:

  4. #24
    Moderator jody's Avatar
    Join Date
    Jan 2004
    east o the southern warren
    is his injury complete? can you get him into a serious rehab? even if in another state? not to get rid of him or anything, just not all rehabs are equal, and getting into a great rehab could mean the difference between recovery and not. lots of folks have had to seek out rehabs that offer programs of one kind or another. you may like the christopher and dana reeve foundation website. I have been online a lot lately and have learned about centers for independent living. you may have one nearby that can give you information that could be helpful to his recovery.

  5. #25
    He is going to outpatient rehab, but he only will get 30 visits, of PT & OT combined, (that's all our insurance will pay for). I would do just about anything if he could go to a place like Shepherd's Day program, but we cannot afford to do that and our insurance won't cover it. So for now, it's the little outpatient therapy we get and me trying to figure out what to do to get him better and stronger and more independent. It's soooo stressful to have this all my shoulders.

  6. #26
    Senior Member
    Join Date
    May 2006
    New York
    My mother put my father pills in 3 small cup each a different color so he knows which one. She also fills a water bottle with straw, he drinks coffee all day from a urn using a travel mug with a lid, he uses his teeth to open it. She'll leave a sandwitch on plate with napkin over it and there cookies in a container with lid on it but not on it.

    My father was home alone while my mother had surgery and was in the hospital for 2 day's he was home all day and night excluding when he was gotten out of bed and when he got in it.

    He has a cell phone he uses he uses the hand writing tool to with a pencil to dial the phone.

  7. #27
    My heart goes out to you!!

    My daughter t12 injury about 7 months ago. Hard, but much easier than what you are going through. Do you have a case manager? If not ask your insurance for a case manager. Our case manager was able to work with our insurance so they would cover her to go to Kennedy Krieger for therapy. We get 60 therapies a year. I'll be getting with my case manager soon to see if they will make an exception for more as we will be running out soon. She has gained so much and a lot of it is because of therapy. We do what we can at home on top of 3 visits a week of PT and swimming.

    Also, I would think he would be able to get some home care. My daughter qualified for state insurance because they look at her income. They give us 10 hours a week of in home care. It seems like you really need the in home care.


  8. #28
    Hi Jennifer, looks like you have gotten many helpful replys. I wanted to share with you where my husband does his rehab. Dale, the founder of the clinic used to be an OBGYN. He was practicing his flips on his trampoline and fell off breaking his neck. No one ever thought he would walk again and he thought he was going to be in a sip and puff chair for the rest of his life.
    Now he has started this foundation and he is walking. He is an incredible man and we are so fortunate to have my husband doing his rehab there. Check it out. I know that people have come from all over the country to get their help. It is an amazing place!!!

  9. #29
    Jennifer, Please contact me. I know a great lady at Project Walk who is also taking care of her C5 husband. She would be a great resource for you and her husband is making great recovery. You can send me a personal message and I'll put you in contact with her. She has three small kids and somehow is keeping all of the plates spinning in the air. Good luck to you. If you have time, visit

    Luke 5:24

  10. #30
    hi Jen, just checking to see if you got my pm...judy

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