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Thread: How to keep positive?

  1. #1
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    How to keep positive?

    Where do I start?? Our lives have completely changed over the last 1 1/2 years. I'm looking for advice on how keep my sister positive with her recovery! Sorry if this is rambling and jumping all around...

    I am the primary caregiver for my sister, Amber(age 32), who was injured in November 2005 when a driver who was impaired on drugs collided head-on with the motorcyle on which she was a passenger. The accident caused multiple fractures, a closed head injury(minor) and a c1-c2 distraction w/ hematoma from c1-c5. She was in the hospital for 4+ months, had a trache for 9+ months (for swallowing problems due to paralyzed vocal cords) and has been working her butt off in therapy ever since her injury(first at Kernan Hospital in Baltimore, then SCI-Step in Ohio and now at Kennedy Krieger in Baltimore).

    The positive aspect is that everyone(drs, therapists, etc.) says she is not "text book" case as she can breathe on her own, has control of bowel and bladder, can feel most everywhere(not normal feeling, but can feel), can walk short distances with a walker without AFOs(she just uses the walker around the house). But even though she can do these things she's not "supposed" to be able to do, she still functionally cannot do anything(ADLs) for herself. She cannot get out of bed on her own, get out a chair on her own, get dressed on her own, she does not have good use of her arms(although she can feed herself now, albeit not something like soup), her tone has been bad, esp when she is trying to do exercises or even get out of bed (she is now taking Zanoflex in addition to the Baclofen she has been taking - dr said no to baclofen pump because that would mess up her bladder since she pretty much has the bladder function of an AB person) and her progress has been very slow.

    All in all, Amber has been really positive - basically saying she isn't staying in that wheelchair and has been giving her therapy 200%, but over the past week she has really, really been down in the dumps(crying, telling my to just shoot her, etc.) and I think it was made even worse yesterday when she had her monthly PT eval and not much changed from last month and her tone was bad to where she couldn't do things this month that she could last month. It has been really frustrating for Amber because the progress has been so painstakingly slow. She's had days when she's been down in the dumps, but this has been going on for a week now.

    And to top that off, I had been so overwhelmed with following up with insurance, doctors, bills, social services(very frustrating), planning fundraisers to raise $$ to pay for caregivers, uninsured therapy, etc. and then trying to live my own life with working full-time and having some time for my husband(who has helped tremendously with Amber). AAAHhhhhh!!

    So, any advice on how you handle this with your loved ones? I've mentioned anti-depressants, but she doesn't want to take any more meds.

    Thanks for any advice! Heidi

    Thanks,
    Heidi

  2. #2
    Senior Member kate's Avatar
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    Hello Heidi ~

    It's so hard when things do not progress, or even worse, go backwards. In our house, there was pretty much excruciatingly slow progress, with the occasional backslide.

    1.5 yrs post he could get to his feet alone for the 1st time.
    Couldn't really go anywhere, but hey--he didn't need me or a pt to help him stand up, and that was just such a big deal.

    Another 1.5 yrs of struggling every goddamn day to drag himself around with the walker . . . very very gradually trying to use the laufband crutches.

    He's at 6 yrs + right now. Works full time, chairs a board, volunteers in 2 other groups . . . meetings about 12 nights a month, and he gets around with a cane. His right hand never did wake up, so he learned to type with an adapted keyboard using his left hand, and he used to be right-handed.

    Many, many times it was close to what you describe. I remember once early on when we just could not solve the goddamn night spasm problem and neither of us had slept well in weeks . . . he said maybe he just didn't belong at home with me and the girls and my blood went cold.

    Where the hell else is there???

    I kept a careful journal of everything that I could notice, and mostly used it to keep myself positive. See, remember how worried you were about this, and now it's resolved . . . whatever is freaking you out now will be like that, too.

    We did go together to a therapist at one point, a very important and hugely helpful process that lasted about a year. It just helps to have somebody from outside hear you out and find the places where you're not really tracking.

    This is only helpful in the very minor way of knowing somebody heard you, I realize that, and I'm sorry. The thing is, somehow it all really does resolve itself, one way or another. Or, most of the time that's what happens, even when you're not trying all that hard to make it come out right.

  3. #3
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    Dear Heidi,

    Sounds like Amber and you are both working your butts off. My son was injured Mar 06, C2 vent dependent. He had times where he sounded just like your sister and I imagine if we were in their place, we would feel the same at times. He started on anti-depressant right away and still is on the same dose. I truly believe that a low dose just helps take the edge away and makes dealing with what he is going through, a little easier. I think if the dr or counselor at KKI would talk to her, they might be able to convince her to give the meds a try, especially if her mood continues for another week or so. Is your sister in-patient or out? The reason I ask, is my son and I are coming back to KKI in-patient Jul 10th.

  4. #4
    Heidi~ I was at KKI on Tuesday, if I had known I would have tried to meet both of you. I live in the same region as you. PM me if you need an eaar or Amber needs a peer to talk to.
    Go Forward,
    Cheesecake
    Every day I wake up is a good one

  5. #5
    Moderator Obieone's Avatar
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    I'm so sorry your family has to go through this but I'm always so glad when someone has found CareCure ! We don't have any magic here but we do have experience to share as you have already witnessed!

    ...... my husband has a lower injury T5 but has no sensation or movement from the midchest down. He was in rehab for almost 6 months after he was injured 9 years ago ... he learned only what he needed to be independant and thats where it ended .. he does a few upper body excercises and his rom but has chosen to leave it at that and I have finally accepted that! He would rage at his limitations and say things just like Amber (and frankly still does on occasion) I have always felt he lives in his own particular state of denial .. a kind of semi acceptance of his injury!

    Two years into this your sister's injury is still relatively new ... everyone comes to terms with their own situation in their own time (a platitude I know) but its true! One step forward .. two steps back .... the frustrations are terrible to live with but if you read more here you will find examples of hope you can share with Amber that may encourage her. The Exercise forum would be a great place to start and the Care forum is the jewel of CC in my opinion! Maybe you can even entice her to visit CareCure herself at some point ...... you have found bar none the best place on the net to help her on this journey ... even if she chooses not to participate here you will find lots of info and support that you can share with her .. some of the stories will amaze you ... sci is very scary when you are starting from scratch .. we all can attest to that .. but knowledge is power ..... isolation can be a terrible thing when facing such a significant challenge .. for everyone not just the person with the injury ... we are a community ready to share .. you are not alone!

    Come here as often as you can and we'll support you as much as we can ... there is an answer to almost every question and when there isn't we'll try to point you in the right direction! I wish you both strength and peace .....

    Obieone
    I wanted to add a gentle reminder here to remember take care of yourself too ... if you don't you will drown in this and then you will be of little value to the very people you so wish to help ... whenever you feel the need ..... come here to vent ... we have ice cream, we have the pipe and I think there's an Enya cd around here somewhere ..... you have found the sanctuary ..
    Last edited by Obieone; 06-28-2007 at 10:04 AM.
    ~ 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

  6. #6
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    Thanks to everyone for your replies! I think it does help to hear from others going through the same things, both from an SCI person's point of view and as a caregiver, and to just vent.

    Kate - I used to keep a journal, especially at the beginning when Amber could not move anything and it was all of the little things that happened along the way that were positive - like when she could only sit up for 30 seconds without falling over and how that kept getting longer to 45 sec, 1 min, 1 min 20 sec, etc.) and when she first stood and when she took her first step. I remind her of those things and how far she has come in 1 1/2 years, but she gets disgusted because she says she's still not able to do anything. Maybe I should start the journal up again and/or ask her to start up a journal (although she does get frustrated with writing). Thanks for listening and responding!

    jmt823 - Amber is out-patient M, Tu and Thu in the afternoon at the Fairmount location (a couple blocks away from their main location). If she doesn't come out her funk soon, I will ask her dr to talk with her re: anti-depressants. I think one of the things that is really bothering Amber too is that when she was first injured and even up to 6 months afterwards, she had tons of visits and calls from friends and now they only come around occassionally, if that. She thinks all of her friends have forgotten about her.

    cheesecake - I will be PMing you soon - I think that would be good for Amber to have someone to talk to.

    Obieone - I am so glad I found CareCure too. I have been reading a lot out here over the past year or so and and I have learned a lot(I can't imagine if CareCure wasn't here since SCI is such a totally different world and so much info and support is out here!). This week has just been so crazy and I feel so helpless seeing Amber getting so frustrated and down and saying just to shoot her. I will see if she's interested in visiting CareCure. Thanks for the support - it has definitely helped!

    Heidi

  7. #7
    I replied to you PM but LOST the answer. Will try again later.
    Every day I wake up is a good one

  8. #8
    Senior Member zillazangel's Avatar
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    (((((((((((((((( welcome ))))))))))))))))))))))))))

    Take Obie up on the offer of the peace pipe, the Enya CD and make yourself at home. I'm a caregiver too, not the same circumstances, but there are so many common themes no matter what the circumstances.

    Welcome.
    Wife of Chad (C4/5 since 1988), mom of a great teenager

  9. #9
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    jmt823 - Amber is out-patient M, Tu and Thu in the afternoon at the Fairmount location (a couple blocks away from their main location). If she doesn't come out her funk soon, I will ask her dr to talk with her re: anti-depressants. I think one of the things that is really bothering Amber too is that when she was first injured and even up to 6 months afterwards, she had tons of visits and calls from friends and now they only come around occassionally, if that. She thinks all of her friends have forgotten about her.

    Heidi,

    Ben has been lucky with his friends but, they are all teenagers and don't have the same stuff going on in their lives as we do, family, jobs, kids,etc... Ben does feel the same way sometimes and I just tell him, it's a two-way street and that he has to call them too. If either one of you would like to get together while we are there just let me know. It looks like we will be there for about 6 weeks or so. We can always use some new friends! Ben is 18 but, can talk to anyone and so can I. Jill

  10. #10
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    Jill - Esp since you'll be here for 6 weeks, we should definitely get together! You'll be in the Broadway location, correct? Do you know the times of Ben's therapy?

    Well, we all went to the beach in Ocean City, MD last week and I thought it would be good for Amber to get away and it was for the first day or so, but then I think it made her sad seeing all of the things she could not do, esp not being able to play in ocean with her 11 year old daughter. And she just has such a negative view of herself, or I should say on how others see her. She was almost crying when we we going to the beach saying that people were going to be staring at her and she's such a "retard" (as she calls herself). I felt really bad for her, but told her that wasn't true and to stop feeling sorry for herself and look at the things she can do. I'm just not sure how/the best way to handle this when she gets so negative because god I know she's been through a lot, she's been working her butt off at therapy and it's so frustrating just to see her struggle to do every little thing.

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