What I wish my family understood — Reeve Connect
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What I wish my family understood

Monica.T Member Posts: 105 ✭✭
25 Likes 10 Comments 5 Awesomes Photogenic

Since his SCI my son requires catheters to pee. I am my son's sole caregiver, this limits me to how long I can be away from him. Any thing I do falls into the narrow window of 8:30am to 10:30am while he is at school. That's when I go to the local grocery store (we live in a small town, not much here except a few stores).  Because of the limited time I haven't been to my own doctor since my son's SCI. If my mother or daughter would only learn to cath him I would have that extra needed time to schedule an appointment with my doctor (haven't been to the doctor since early 2017).  I've tried to get them to take a more interested and involved role in his care but they are reluctant to do any 'hands-on' care.

This worries me because if something were to happen to me there would be no one within the family to care for Charlie and I fear what would become of him. They (family) say "oh don't worry, we'd take care of him" - but how could they if they won't even learn to cath him! They don't even take seriously his need to be cath'd every 3-4 hours.

Wish people understood that actual caring is more than just mouthing the words!


  • Zcollie
    Zcollie Moderator Posts: 239 Moderator
    100 Likes 100 Comments 25 Awesomes First Anniversary
    Hi @Monica.T I am sorry to hear that all the responsibilities fall only on you for your sons care. I am sure that is very overwhelming and stressful. I am not sure how old he is but have you ever heard of a super pubic catheter? Might be something to look into for your son. 
    Accept what is, let go of what was, and have faith in what will be. -SONIA RICOTTI
  • Mnichols23
    Mnichols23 Moderator Posts: 43 Moderator
    10 Comments First Anniversary 5 Awesomes First Answer
    @Monica.T have you looked into the superpubic catheter? I have one and love it! It will afford both of you much more freedom 
  • BrookeU
    BrookeU Moderator Posts: 175 Moderator
    100 Comments 25 Awesomes 25 Likes Photogenic
    @Monica.T, I just wanted to echo the previous two comments! It gave my brother a lot more freedom.
  • Monica.T
    Monica.T Member Posts: 105 ✭✭
    25 Likes 10 Comments 5 Awesomes Photogenic
    Thanks everyone, I'll ask his urologist about them :)
  • Monica.T
    Monica.T Member Posts: 105 ✭✭
    25 Likes 10 Comments 5 Awesomes Photogenic
    Called my son's Urologist, he feels that having the suprapubic cath would not work well for Charlie , Charlie already has a feedingtube port just above his navel and his ortho doc is talking about a baclofen pump placement, so the Urologist feels adding another "tube" coming out of Charlie's body would hinder rather than help our current situation. And I tend to agree, people (family included) already find just his feeding tube intimidating adding more 'stuff' to him would make it even harder for me to ever have any hope of getting family to help with him. Right now I can only be away from him while he is at school where they have a nurse that can cath him.
  • Dan_Gottlieb
    Dan_Gottlieb Moderator Posts: 15 Moderator
    10 Comments 5 Awesomes 5 Likes Photogenic
    Hi Monica,

    My heart breaks hearing what you are going through without the support of your family.

    First, a medical comment. I have been using an indwelling catheter for years and I have had very few UTIs. I changed it about once a week and I take a prophylactic antibiotic. Everybody is afraid of them, but I've had good success.

    Now the emotional. As a psychologist, I have to wonder about the nature of your relationship with your family even before all of this happened to your son. So perhaps something needs to be talked about there.

    It sounds like your family is not comfortable having an in-depth discussion and I wonder if you are comfortable doing that also. You see, people can't understand the depth of your suffering without you opening up completely. Talk about your life and what is and isn't happening. Talk about your fears for your son and what you have lost in your life. Perhaps you feel lonely and alone. If you can share that with your family and they are still not response, any chance you could find a more functional support system? Something like people at your church or a community group you might have been involved with in the past?

    I wish you peace Monica

    Daniel Gottlieb PhD

  • Monica.T
    Monica.T Member Posts: 105 ✭✭
    25 Likes 10 Comments 5 Awesomes Photogenic

    Hi Dan,

    Thank you. I've tried desperately to get my mom and daughter (she's 30) to understand how serious Charlie's care is. A friend told me that my family probably doesn't see the need for their involvement because I am his care-giver and rarely ask for help, which is true but I have tried to explain to them that it is important that they learn the basics in case something happens to me (like a car wreck or something that would prevent me from being there) in which case they would need to know how to cath Charlie and know about the signs for AD and what to do. They just kind of blow it off and say stuff like "nothing is going to happen" or "if we have to we will call somebody, we'll figure it out" = to which I asked "WHO! Who will you call, if Charlie needs to pee his bladder could burst waiting hours for you all to figure it out!" . I've tried several times to show them how to cath Charlie but get the same response "I'm not comfortable with trying to do that, I might hurt him".

    So, the only time I go anywhere is while he is at school where there is a nurse that knows how to cath him.

    We live in a small town and except for one friend nobody is "comfortable" with helping out with Charlie and my friend is basically home-bound too, her husband is bedbound and requires constant care. We keep in touch by phone.

    My greatest worry is what will happen to Charlie if I become unable to care for him.

  • Monica.T
    Monica.T Member Posts: 105 ✭✭
    25 Likes 10 Comments 5 Awesomes Photogenic

    I'm facing breast cancer surgery, been putting it off for months, because my family still refuses to learn to cath Charlie and because he falls into the age "gap" for insurance coverage of in-home nursing care (which means insurance won't pay) so instead of the mastectomy the surgeon says I should have, I am having an out patient procedure to remove the tumor and lymph nodes.

    I've cried, I've begged, I've pleaded, I've reasoned, I've explained the need with my mom and daughter to learn to cath Charlie ..... they just won't!

    I now realize without a doubt that should anything happen to me, my family will throw Charlie in a nursing home facility - if they don't let him die of a ruptured bladder first waiting for someone to come haul him away.

    I know they love him, but they don't love him enough to actually care .....

  • prc_Beth
    prc_Beth Moderator, Information Specialist Posts: 61 Information Specialist
    Second Anniversary 10 Comments Name Dropper 5 Awesomes


    Please take care of your health too. Even with the outpatient procedure you might need some assistance.  I am sorry you are not getting the help you need.


    Beth Eisenbud | Associate Information Specialist, Paralysis Resource Center

    Christopher & Dana Reeve Foundation  

    a: 636 Morris Turnpike, Suite 3A  |  Short Hills, NJ 07078
    e: [email protected] | w: www.ChristopherReeve.org
    p: 800-225-0292 or 973-379-2690 | m: 973-933-7000

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