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Thread: Living arrangements

  1. #1

    Living arrangements

    I am not sure where to post this so here goes. I have been back home since just before Christmas and we are trying to get our lives in some sort of order. We have done a lot of remodeling on our home to make it more accessible and accommodating for me. We had decided to add a new bedroom and bath onto the house since we have two story home. On the face it seems like a great decision, but it has had its problems as well. When I was first home getting used to everything seemed to be a full time job. Just learning to get around the house was hard enough without crashing into the walls and furniture constantly.

    We thought the room would be perfect for me with a new bed and lift and everything that we thought I'd need for my care. But my husband can't seem to find it in himself to share that room with me and I really don't know how to deal with this part of everything. I mean he is kind and gentle and helps with my care in every way that he can. He gets me into bed every night and turns me when it's required. But he can't find the courage to do more than that.

    Is this common? Can I do anything to change it? Are we destined to drift apart?

    It seems like so many things have been turned upside down in my life. I never really quite know what to say or how to bring things up. Becoming dependent on my family and others for almost every facet of my life is very draining emotionally. I know that a year is not a lot of time yet, and perhaps there may be more return and recovery, but I have not had much in that department. I know it has been hard for everyone to accept that part of a spinal cord injury. I know I am rambling and many of you must think that I just need to get on with things.

    It has been wonderful to find this place and to see how many great people are here. Thak you for letting me vent a bit.


  2. #2
    Senior Member
    Join Date
    Feb 2002

    My heart goes out to you

    Your husband's behavior is probably not too unusual, under the circumstances. It's been an emotionally draining adjustment for him too. He's suffered a loss too, and is also having to process all of it. You're right on that one year is not enough time.

    I'd give your husband a lot of space and understanding. Although I'm merely speculating, I'd assume he's had to be the backbone of your situation, but few if any people are focusing attention and concern on him. It's a tough part to get thrust upon you unexpectantly.

    Study the grieving process--for both of you. Again, reality is that you've both suffered a type of "death"--the end of your past life together. Where are you? Anger? Denial, Resolution? He's probably somewhere different.

    Do you have a minister or trusted friend that he could talk to w/o fear of judgment, rebuke, etc.?

    My husband and I didn't have to experience this. I guess that's why I admire couples like you who can patiently adjust and bravely confront the issues that WILL destroy your relationship if not dealt with. If I were you, I'd pray for wisdom and understanding. God will give you insight and ideas into what you need to do, and what you need to let Him do. Remember, it's not all in your hands. It's in much bigger hands. That should be a comfort.

  3. #3
    Senior Member rdf's Avatar
    Join Date
    Jul 2001
    Someplace between Nowhere and Goodbye
    Venting is Good, Sharon. I believe your situation is common with sci couples. One thing I've come to know from spinewire is that your husband, or lover, or soulmate shouldn't be your main caregiver. It causes problems, the emotional costs seem to outweigh the convenience.

    Talk to your husband, you both should honestly share how you both feel, how you hurt, how you are afraid, and how you wonder about the future. Talking these things through and clearing the air seems to help a lot, and it is really needed at a time like this.

    Sometimes it's hard to share your innermost feelings, but how else can somebody know how you feel? You have to talk to each other about lost intimacy, and how to regain it, it takes both of you to find it again, but you will because you love each other.

    You're newly injured, and not home for very long, so don't fret too much. Keep hope alive, Sharon, and always come here when you're blue, or happy too, because everyone here knows what you go through.


  4. #4
    Hi, Sharon, Everyone's advice was spot on, I'll only add to support their thoughts; you're both still in the active stages of grieving, where feelings might be raw and not easily expressed.

    Don't know where you live, but where did you do your rehab? Was there a family support group for your husband at rehab? Is there one near your home? It might help for him to talk with others about his feelings.

    Also, are you in a hospital type bed, or a regular bed? If you need/have a hospital bed, a company called Transfermaster at makes a double bed where one side can be rigged to lower and elevate as needed.

    Tough times don't last - tough people do.

  5. #5
    A big thank you to all of you.

  6. #6
    I guess what I am most afraid of is the uncertainty of the future. I know Carl loves me but we are both afraid. We have caregiver weekeday mornings to get me up and going. She stays until about 11:00 in the mornings. Then either my mom or my sister or a friend comes in and stays until Carl gets home to watch the kids and get my lunch and take care of the ongoing needs. Sometimes I miss time by myself but I am still very afraid to be alone. He does my care on the weekends.

    I know from reading here and talking with others that for some improvement comes even after a year. I hope that is the case but so far no. I think the permanence of all of this is beginning to become clearer to Carl, and I am afraid that he is having a hard to accepting it. I know on many days I do. I really like hearing from other with high injuries. Hearing how you deal daily life really helps, though it is scary at times.

    You are all so caring and supportive, and I wish I could say what I am feeling clearer and better, but you all will have to bear with me as I explorer this new life.

  7. #7
    Senior Member
    Join Date
    Feb 2002
    I don't think there's one person in this forum who doesn't understand. Feel free to share any time.

  8. #8



    I've found that having open, brutally honest communication has worked best for me. It can be painful but at least no one is holding in their feelings. Feel free to post often we are here to support one another in any way we can.


  9. #9
    I wish that I had a way to get my husband to see everything that is written here. I want him to get invovled but he doesn't feel like he can yet, so he says. I am afraid that he thinks that if he does he is admitting that this is permanent.

    It will be one year for me next Sunday and already I feel a sense of saddness that I can't seem to shake off. Ron still think that this will get better, that I will recover something. I wish I felt that way at times. Thanks to everyone for being here. You do more than you can imagine.

  10. #10



    I don't think either one of you should give up hope. People do regain recovery 2 years plus after the accident. Keep living, keep hoping, and keep talking to one another. Make things the best you can until a cure is found. A year after my accident I continued to have ups and downs. Denial is a biggey in our community. Focus on the forum and try to find topics that continue to give hope and good luck.


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