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Thread: New to This

  1. #1

    New to This

    I'm not sure if this is the right forum to post this, but here goes...

    My husband was injured on July 9 (T4) and has been home for about 2 months now. He's doing great and, thankfully, has avoided much of the complications often associated with SCI. I also think we're doing really well as a couple, and as a family (we have a 19 month old little girl). My question to all of you pros, though, is how do we keep this up? I REALLY don't want our relationship to become that of a nurse and patient. Thus far, we've worked hard to ensure that our spousal relationship stays strong (night away at a hotel, time to ourselves, being sure to talk about everything, etc). Any thoughts?

  2. #2
    Hello "acleyba,"

    Welcome to Care Cure Community.

    You sound like you and your husband have a pretty good idea what it takes to maintain your relationship and I really can't add much. Living with spinal cord injury affects everyone in the relationship. Life has its ups and downs that are difficult enough, but add the spinal cord injury ups and downs and life can get pretty bumpy at times.

    You may enjoy the camaraderie of the private forum for caregivers on this website. You can join by going to your User CP, a tab next to home on the dark blue bar above. Scroll down to Networking and then to Group Memberships. Select the Caregivers group. Or you can contact one of the moderators of the group directly.

    Hope to see you around.

    NL (GJ's wife and caregiver)

  3. #3
    Senior Member
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    Sounds like you are off to a great start, and keeping the boundaries between spouse and care giver with a T4 injury shouldn't be too difficult. You husband should eventually, if he is not already, be totally independent in his own care. Welcome to CCC. Keep writing, and keep asking questions. So many people here have experiential knowledge of virtually everything related to SCI.

  4. #4
    A warm welcome to the community, acleyba.

  5. #5
    Welcome to CareCure! There is a wealth of information here for you so explore. I've been Jim's (c5-6) wife and caregiver for 31 years and I still learn a lot from these boards.

  6. #6
    Thanks for all the encouragement. I have another question. When did you "settle" in to your new life? Right now, I feel like I worry about every possible complication: UTI, pressure sores, AD, etc. I have had trouble sleeping at night due to worrying. Jason's rehab doc said that, even though he's a T4, he probably won't have problems with AD if he hasn't had any yet, but I still get nervous about everything else...especially pressure sores.

  7. #7
    Senior Member
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    I think everyone takes their own amount of time, but after the first year of so things should start to feel pretty routine. He will learn certain skills having to do with real life living situations by experience, and by shared info from people here and in rehab. Simple things like a good tray that fits on his lap solves the "how do I carry that?" question. Reacher's help with objects that are now above his reach level. I'm not suggesting you throw out what you now have, but when the time comes a front load washing machine means it is easy to get the clothes out. Till then a coat hanger or reacher serves well. A good cup holder or bike cage attached to the wheelchair means he can bring his hot coffee or cold drink wherever he goes without fear of being burned (saves money too....). I don't cook a lot, but bless the microwave and use it constantly as an easy way to have a good hot meal. Transfers will get easier over time. A lot of it has to do with just the re-accomodation that the body goes through, learing balance points, what is worth doing and what can slide, and being surprised (eventually) that you can do more than you ever thought you would be able to originally. Pressure sores should hopefully not be a big issue for him if he does his weight shifts. At T4 there isn't any reason he can't do those shifts effectively, and that combined with a good cushion will make a huge difference, along with a decent diet that helps maintain health. No reason to skip the good things in life, but make sure he has adequate protein too.

  8. #8
    Moderator Obieone's Avatar
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    Welcome acleyba - there is a wealth of info here as you've already experienced in this thread ! Settling in is an ongoing process - my husband is entering his 14th year injured at T5 but was already 50 something when he got hurt - there's too many factors to give a pat answer to that question. But in our experience it simply evolved with time - we had some fairly serious peripheral health issues a few years back that have resolved but one never knows what's around the corner. We can only do our best and hope for a little luck - I do think we've learned to roll with things more easily than we used to - it's a matter of survival - you have to pick your battles ! And of course learning to laugh at the absurdity of life will go a long way to maintaining your sanity !!

    Venting is essential - and it's why we are here !

    Obieone
    ~ Be the change you wish to see in the world ~ Mahatma Gandi


    " calling all Angels ...... calling all Angels ....walk me through this one .. don't leave me alone .... calling all Angels .... calling all Angels .... we're tryin' and we're hopin' cause we're not sure how ....... this .... goes ..."
    Jane Siberry

  9. #9
    Moderator jody's Avatar
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    welcome.
    sorry this happened to you and your family. this is a good place to get support and answeres.

  10. #10
    Welcome! It has been a long and winding road with my husband and I. He is C3 complete for 3 years now. The first year was in hospitals and 4 months at Craig hospital and moving to an accessable home.
    We gradually settled down after that and I stopped worrying as much or at least did not freak out as badly when things did go wrong.
    Good luck as you both move along and settle in.

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