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    hi everyone,
    I'm sort of new to this, my husband will be coming home from rehab soon (C6, complete) and I just wanted to hear some stories from those who know, what to expect of: him, us and our children when he comes back home. It is still so new and unreal, I'm not to sure of what to expect.


    Welcome Maja. It will be very busy and different! At first you just have to learn how things will work and keep a sense of humor. It's okay to laugh and to cry. Here are some things I found helpful:
    keep a calander that you can write in, for bowel program results, methods used and what medications used. It sounds amazing but you can forget from day to day in all the exitement and stress of those first months. It will also help with any problems that come up on as a quick reference. I also marked in catheter changes, reordering upplies, etc.
    I bought a few roll-around carts with drawers to keep supplies in, can easily be stowed in closet, over to bedside, bathroom, etc. Cheap at discount stores.
    Try to visualize his morning routine and keep things handy and set up for him to use. Same with night routines. If you have the room, get lots of supplies to tide you over. I had nurses in rehab order a ton of stuff before he was discharged so insurance would pay and I'd have a few weeks grace.
    Call your friends, family and call in those helpful chits--have them freeze up some extra dinners for those hectic days.
    I found it helpful to get a routine going so we didn't forget anything, at first it seems like so much, but gets easier and second-nature.
    Having a tv or music in bedroom makes daily stretches less of a chore.
    Go thru your house and imagine going in a w/c....move furniture, get rid of small area rugs. Tape tongue depressers on thermastats so he can control them, clap on lamps, dedicate a cell phone for him and one for you. Keep w/c space open at table.
    Be sure to give him some private time and yourself. Get outside for a walk. Keep a journal.
    Get a cheap 3 ring notebook and keep medical records, equipment data in it. A backpack with a few chux, extra caths, AD instructions will come in handy. I keep a small bin in the van with extra pants, sweatshirt, caths, water.
    Jim's doctor sends him a copy of his notes of all visits so we can collaborate with any other doctors needed and have records for insurance, etc.
    lastly, It's hard sometimes, but try to stand back and let him do all that he can With time you will just know when to help, but it's good for him to do anything for himself that he can. And it will be more all the time. Ask for his advice and help, so he can gain his self-confidence back.
    I hope some of this might be helpful. Try to get out together and separately. Keep in touch, we are here. Debra


      Hi, Maja--

      I second everything Debra said, and only wish I'd had her to advise me when we were new at this.

      For us, the first couple of months at home were worse than the hospital, mostly because right after discharge my husband started getting spasms in his legs that kept us both awake all night--for about 6 weeks. Eventually he found a combination of meds that allowed him (and therefore me!) to sleep.

      Keeping a journal is extremely helpful--you'll be able to quickly see how the things that are stressing you go away, which makes it easier to keep your perspective.

      While he was still in the hospital, the staff got together one day and put together a description of what a "typical day" at home might look like. It was surreal, but it helped us both to see what the issues ahead might look like. I'd really encourage you to ask for something like this.

      Starting with getting up, what will happen, what supplies will he need, what equipment, what assistance, and then what will happen--etc, all the way to how does he get to bed.

      My last thought is that the one thing we never, ever skipped no matter what was range of motion exercises. Morning and night, no matter what.

      And stay with us! [img]/forum/images/smilies/smile.gif[/img]


        Homecoming is scary and exciting all at the same time! What Deb and Kate said is all great advice - I won't repeat it!

        I will say - take care of yourself. Caregiver burnout is a very real issue - we've all been there; and especially since you have little ones in the picture, too, you're 'caregiving' for the whole family. Take some time for you, even tho you'll feel guilty doing it; it's important!

        And keep the communication lines open; talk about your feelings with each other. Use these forums as much as you can, and ask as many questions as you need! Oh, yes, and get hubby up on the forums as soon as he gets home!

        If we have no peace, it is because we have forgotten that we belong to each other. - Mother Teresa


          Hi Maja~

          I'm so glad you found us here; you've already heard from some of the best, and I'm sure there will be more advice to come. Be sure and ask questions: you would be amazed by the wealth of experience on these boards.

          My daughter is a T11/T12 complete, and was in the hospital for a total of 2 months after her accident. The thing that surprised us when she came home was her fear. She had been doing well in the hospital, doing things on her own and all. But coming home was a reality check. Things weren't perfect; not everything was accessible for her; she missed the nurses (she really bonded with some of them). She saw the hospital as a safe haven, while home was a big, scary "I'm on my own" place. I don't know if this makes much sense (it's early here) and your husband may not even come close to these feelings or reactions, but I thought I'd throw it out there. It was something I couldn't have predicted, expected or anticipated.

          Keep us posted!
          "God warns us not to love any earthly thing above Himself, and yet He sets in a mother's heart such a fierce passion for her babes that I do not comprehend how He can test us so."
          ~Geraldine Brooks, "Year of Wonders"

          "Be kind...for everyone you meet is fighting a great battle."
          ~Philo of Alexandria


            Yes Vicky ... its called becoming institutionalized ..... even though you are sooo ready to come home after being in the protective womb [img]/forum/images/smilies/eek.gif[/img] of a hospital room suddenly you are "out there" [img]/forum/images/smilies/eek.gif[/img] .... we go through that feeling every time Bill has to be treated for whatever [img]/forum/images/smilies/rolleyes.gif[/img] .... and yes Welcome Maja .... so glad you found us. You will be way ahead of the game with the info available to you here. My husband Bill is T5 complete and I remember very well his first day home after nearly a year in hospital and then rehab .... we all gathered in the kitchen (we have 4 kids who at that time were 14, 10,9 and 4 years old) sort of stared at each other and then kind of came together in this awkward group hug and cried [img]/forum/images/smilies/frown.gif[/img] and laughed [img]/forum/images/smilies/biggrin.gif[/img] for what seemed like an hour but was more likely about 10 mins. ... I don't know how Bill didn't suffocate [img]/forum/images/smilies/smile.gif[/img] ... Then we just sort of got on with our life somehow .... that was 6 years ago - sometimes that day seems like yesterday and other times it feel like another life time ago!!

            The others have shared some great advice with you be sure to keep checking in here at CC and we'll try to help you through this "one day at a time" ...

            Obieone [img]/forum/images/smilies/cool.gif[/img]
            ~ 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


              You have received wonderful advice here. I would add a few more items:

              -get numbers and contact information for his entire rehab team (MD, PT, OT, SW, nurse, etc.). You will have questions the first few weeks and months, and should be able to call and get information, or just be re-assured that you are doing the right things and making the right decisions.

              -be sure you have everything you need to manage any autonomic dysreflexia. Speak to the nurse and physician about what meds may be needed, and what supplies, and make up a kit to keep at home and in your vehicle. Be sure to rotate supplies and meds so they do not become outdated.

              -for all those people you know who have asked "let me know if you need anything"...take them up on it now. Ask them to do shopping, run errands, bring in meals, do your housework and gardening (unless this is therapy for you). This will free up your time to both get organized and into a routine, as well as take some very necessary time for yourself to recharge your batteries and maintain your mental health.

              -At his level, he should not need you there all the time. Start early setting him up with what he needs and leaving the house. At first you may only want to take a walk around the block, but you should start to do things like have lunch with a friend, go to a movie, walk on the beach, play a round of tennis, or whatever else gives you enjoyment. You will be a better caregiver, and he will develop more of a sense of independence and be less fearful of being alone.

              Good luck, and continue to use this forum and the Care forum as a resource. Get your husband to join us as soon as possible too.

              The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.


                Thanks, Obie..that's the phrase! When will I learn to post only with a certain level of caffeine in my body?? [img]/forum/images/smilies/wink.gif[/img]

                KLD brought up some excellent points (as usual!). The idea of letting people help out, and taking time for yourself may prove to be the most difficult thing you do. Learn to be gracious!! Ignore guilt!! I'm and your entire family will benefit in the end if you remember to take good care of yourself, and decompress.

                "God warns us not to love any earthly thing above Himself, and yet He sets in a mother's heart such a fierce passion for her babes that I do not comprehend how He can test us so."
                ~Geraldine Brooks, "Year of Wonders"

                "Be kind...for everyone you meet is fighting a great battle."
                ~Philo of Alexandria


                  Everyone has given you good advice in their posts. My husband,Brad, came home for the hospital Nov. 2003. I was so excited to finally get him home, but what a life changing moment that was!!! It is a lot of hard work at first. It really helps to set up a routine. We have three young boys, and trying to give all of them what they need, left little if any time for me. Take anyones help that offers. Have them clean the house, do laundry, freeze meals, whatever they can so you and your husband can concentrate on your new life.
                  There is a very thin line between doing to much for your husband and not doing enough. Only do what he needs you to do and reasses often. The more he can do for himself, the better he will feel about himself, and that is one less thing for you to do.
                  This first year has been tough, but it has been worth it! I only need to help Brad with his bowel program and a little help in the shower. When he first came home, I did all his transfers, got him dressed, made him meals etc. He is very independent now. It is not the life we had before, but it is better then the prognosis we were given after his surgery.
                  I wish you well!!


                    Ahh, ummm, I'm basically speechless. (no wisecracks now [img]/forum/images/smilies/wink.gif[/img])

                    Yes, what everyone below said is excellent.

                    As a C6-7 injury myself I'll just add a couple of things.

                    1. Get a good catalog of adaptive devices that he may be able to use. e.g. kitchen (George Foreman grill), bathroom (electric shaver) gadgets. Even as a C6 he can still help alot given today's devices. You just need a little creativity. [img]/forum/images/smilies/smile.gif[/img] (Catalogs like Byrum(sp), Sammons & Preston, etc. the nurse's know better).

                    2. When I came home we realized pretty quickly that a two-story house just wasn't cutting it. We sold it and bought a ranch style home. Made a huge difference in everything.

                    3. Independence. This may sound a little nuts but I would encourage you to encourage him to regain his driver's license. As a C6 he can drive independently with practice and the right set-up. I'd recommend, initially, a mini-van of sorts with a ramp, hand controls, etc.

                    4. As KLD said I'd also strongly suggest that when he's ready that he join these forums. We can help both of you and your family through this difficult adjustment.

                    Take care Maja. Peace. [img]/forum/images/smilies/cool.gif[/img]


                      Would you add anything for me if I would tell you that my son is a 28 yr old C1-2 vent dependent quad. He has been married for 7 yrs and has a 3 1/2 yr old daughter. They are presently staying at her parents house until their house is remodeled for wheel chair accessibility. He was released from rehab 1 week ago tomorrow and was injured 4 mos. ago today. Thanks for any advise...this all sounds really good.. Sandy[img]/forum/images/smilies/smile.gif[/img]


                        Bryan's Mom - I'd make sure that all of you have been trained in vent care and, lol, don't know where the 'state of confusion' is, but if you have storms and the possibility of a power outage, investing in a generator to keep any electrical equipment he needs running is most important.

                        Does his insurance provide for at home care? Outpatient rehab? How are you equipped for transportation?

                        Oh - one thing I forgot for all the 'newbies' coming home.

                        Develop a relationship with a local doc who can admit to the local hospital. This is SO important, and can ease an emergency admission quite a bit. We also went to our local emergency room, and had a chat with the head nurse as well as the ER director - educated them on AD, and UTIs, told them what we'd need if we came in (even things like extra pillows for positioning are a help). Every visit we made to the ER was a breeze, and I think this helped.

                        We also made a list of:
                        - Medical problem list (ie, injury history, current problems)
                        - Current medications and dosages (much easier to hand this to the nurse taking the history, than try to remember them in an emergency!)
                        - List of all docs involved in their care - from physiatrist to urologist to family doc to whatever other 'specialists' are involved.

                        We made a notebook of this and keep it in my son's backpack on his chair whenever he goes out.

                        If my addled brain thinks of more, I'll post again!

                        If we have no peace, it is because we have forgotten that we belong to each other. - Mother Teresa


                          oh boy.. I'm gone for a few days and so many replies!!!
                          THANK YOU ALL SO MUCH!!
                          there is so much going on every day it is hard not to get overwhelmed