How Do You manage your care needs If your caregiver isn't with you and you're out with friends? — Reeve Connect
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How Do You manage your care needs If your caregiver isn't with you and you're out with friends?

WAGSofSCI Moderator Posts: 379 Moderator
100 Awesomes 100 Likes 100 Comments First Anniversary
Hey All! Brooke here  :)

I am wondering how all of you with Quadriplegia and who are not independent get around from place to place when you are going out with friends? When you are with friends who are not your caregivers and who may not know about your needs, how do you manage? My husband has certain friends who he has trained slightly on how to get him around - and help him when he needs it. These friends have shown interest in it, and have no issues draining his bag while out, or driving the adapted van to and from a place so he can go out with people other than with me his caregiver and wife.  However, some friends have not shown interest in learning to help him out naturally (or asked), and he doesn't have that kind of friendship with them where he feels comfortable asking them to do things like drain his pee bag outside or in the washroom if he needs it.  What do you guys do in this situation? We normally do things as a couple, and enjoy it., so I am always there to help if he needs it, and also this takes the burden off friends. The odd time I am not there, I get slightly anxious unless his friends I know are capable of helping him out. He also in general avoids hanging out with these people that he cant ask for help unless Im there to help or we are at our house.

Is it possible to meet an acquaintance for a drink in these situations and have a casual friendship anymore when you are not independent? 

Thank you!

Your WAGS of SCI
(Elena and Brooke)


  • Sterlion
    Sterlion Moderator Posts: 108 Moderator
    100 Comments Second Anniversary 25 Likes 5 Awesomes
    I want to say the friends who show interest are the only friends I want to keep around. Unless the ones who don't just don't know how to approach the situation. The biggest thing is communication and your husband being able to say what he needs, when and what might go wrong. But yes, it definitely is possible. Also a very good time ;) 
  • curryroyal
    curryroyal Member Posts: 1
    First Comment
    I don't use a cat when I am out but I brought me flexible pipe that I carry with me that can reach the 
  • prc_Beth
    prc_Beth Moderator, Information Specialist Posts: 62 Information Specialist
    Second Anniversary 10 Comments Name Dropper 5 Awesomes
    curryroyal -- I think your comment got cut off. 
  • AskNurseLinda
    AskNurseLinda Moderator, Information Specialist Posts: 165 Information Specialist
    100 Comments 25 Likes First Answer Name Dropper
    Brooke, it is hard to promote the kind of independence that you describe. Especially, as the wife/caregiver, you have to fix whatever could go wrong. But you can ease into it. Perhaps going with people for just a short time at first but extending over time.  If your husband feels uncomfortable in asking for help, then he should reconsider going by himself. If he asks and the friends decline, then he might not want to go out with that group again. Friends change and rearrange for all sorts of reasons. But they often rise to the occasion as well. Nurse Linda

    I'm online in this community every Wednesday from 8-9 PM ET to answer your SCI and paralysis related questions.

    Leave a comment any time below. Let's get the discussion going!

    Nurse Linda

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