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    Lodging Dilemma

    Thinking about going on a road trip out west (from Florida) with my caregiver and her girlfriend. The third person was originally suppose to be her wife, whom I know very well and I'm comfortable with, but they are now separated unfortunately and she wants her new friend to come instead. I don't know this person well despite the fact that she's been over here alot for the last two months. She's made no effort to get to know me and like most people doesn't know or understand much about quadriplegics. And now, suddenly, I'm being presented with a new, and unexpected, alternative for this proposed road trip, courtesy of my caregiver and her new friend.

    What do you think about dropping a totally dependent C4--C5 quadriplegic off at a hotel, and leaving him/her alone there all night to sleep while camping out at some campground ?a few miles away? as a "money saving measure? as opposed to getting two hotel rooms? And doing it repeatedly all across the country?

    I don't like this idea at all. Not that it wouldn't be possible but it's risky in my opinion. My noncompliance with this idea has caused some friction so I want to know if I'm overreacting and shouldn't worry or has my caregiver completely lost her mind with this suggestion?

    Paul
    C4-C5 Quad since 9/15/85

    #2
    Originally posted by Yor View Post
    ...
    What do you think about dropping a totally dependent C4--C5 quadriplegic off at a hotel, and leaving him/her alone there all night to sleep while camping out at some campground ?a few miles away? as a "money saving measure? as opposed to getting two hotel rooms? And doing it repeatedly all across the country? ...
    You are kidding right? This is a terrible idea IMO.
    I have had periodic paralysis all my life. I lost my ability to walk in 2011 beginning with a spinal block, which was used for a hip fracture caused by periodic paralysis.

    Comment


      #3
      I assume if you are taking your caregiver with you on vacation that you would be paying their way, no?? That is the usual, so you would either share a room with 2 beds or get a suite with 2 sleeping areas, or 2 rooms if absolutely necessary. Are you expecting the girlfriend to also help with your care? If so, you should be paying her way as well. Otherwise, I would tell the PCA that the girlfriend is welcome to share her accommodations with you, but not to stay away from you, as you could need her assistance during the night, esp. in an emergency (AD, bowel accident, etc.).

      Otherwise, I think you need to rethink taking this trip at all, or finding a different caregiver to accompany you.

      (KLD)
      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.

      Comment


        #4
        Originally posted by nonoise View Post
        You are kidding right? This is a terrible idea IMO.
        Unfortunately I am not kidding and I completely agree. You could say I was made to feel like I was being a pain for protesting, which is what led me to seek other opinions on the matter.

        Thanks for offering your opinion. It makes me feel better about standing up for myself in this situation.

        Paul
        C4-C5 Quad since 9/15/85

        Comment


          #5
          Originally posted by SCI-Nurse View Post
          I assume if you are taking your caregiver with you on vacation that you would be paying their way, no?? That is the usual, so you would either share a room with 2 beds or get a suite with 2 sleeping areas, or 2 rooms if absolutely necessary. Are you expecting the girlfriend to also help with your care? If so, you should be paying her way as well. Otherwise, I would tell the PCA that the girlfriend is welcome to share her accommodations with you, but not to stay away from you, as you could need her assistance during the night, esp. in an emergency (AD, bowel accident, etc.).

          Otherwise, I think you need to rethink taking this trip at all, or finding a different caregiver to accompany you.

          (KLD)
          The girlfriend has nothing to do with my care, or anything for that matter. At least not in the two months she's been around. The soon-to-be ex-wife, on the other hand, was just the opposite, and helped out with a lot of different things. She was a big reason I agreed to move in with them. We had already went on a trip to Tennessee together for five days before I moved in with them. Six months after I moved in with them their marriage was over although based on what had been going on around here it was over long before that. So basically the situation, and people, I agreed to move in with has been completely destroyed by the person, my PCA, who came up with the idea and encouraged it in the first place. Why I wasn't given any heads-up about this, or any potential problems between them, before I agreed to move in with them is anybody's guess.

          And since this other girl has come into the picture my PCA has been making bizarre and questionable decisions, none of which benefit me in any way typically. This bizarre request is one of them. It's put me in a really difficult situation because I can't just pick up and move out so I'm trying to make the best of it. But stuff like this keeps happening making it very difficult to do that. I'm not the type that likes to "rock the boat" and I felt bad about saying no to that idea, especially since it upset her initially. That's why I came here to seek other opinions on the matter even though I suspected people would feel the same as me about such a ludicrous idea.

          And yes my PCA is well compensated for whatever she does, including travel. Any companion would be as well.

          Obviously I have bigger problems than just this trip but the trip is something I have to deal with right away.

          Thanks so much for your advice.

          Paul
          C4-C5 Quad since 9/15/85

          Comment


            #6
            not no but hellno that's to dangerous

            Comment


              #7
              Originally posted by nonoise View Post
              You are kidding right? This is a terrible idea IMO.
              What they said ^ ^ ^ ^ ^

              Comment


                #8
                Life insurance?

                How much life insurance do you have on yourself?

                Hmm.

                Ti
                "We must overcome difficulties rather than being overcome by difficulties."

                Comment


                  #9
                  Originally posted by Yor View Post
                  My noncompliance with this idea has caused some friction so I want to know if I'm overreacting and shouldn't worry or has my caregiver completely lost her mind with this suggestion?

                  No you are not overreacting. I would worry. Yes your caregiver has lost her mind. IMO
                  "Never turn your back on fear. It should always be in front of you, like a thing that might have to be killed." - Hunter Thompson
                  T5/6 complete

                  Comment


                    #10
                    "Lodging dilemma" says it all, and I'm not referring to arrangements for a road trip. Hope you give some thought to moving into some kind of accessible apartment, even if it's a senior complex, and begin a search for new help. Senior residences, I understand, rent to disabled individuals who are not yet age 55.

                    It's totally unprofessional for a caregiver to even think of such a plan which would leave you at risk. It is your responsibility to tell the caregiver this arrangement is not suitable, as in: "I can't believe you think this is ok" (with a big smile on your face).

                    If possible, reach out to any family or friends to discuss your options and see if they would help you with a plan for changing your situation.
                    Hope things work out for you!

                    Comment


                      #11
                      I think you need to find a new caregiver, she doesn't seem stable.

                      Comment


                        #12
                        I want to thank everybody for their comments. This has been a really difficult situation for me and I guess I needed some assurance that I wasn't being unreasonable in questioning this.

                        As far as the general situation goes it had already started to dawn on me that I might be in big trouble here and might have to do the unthinkable. This is somebody that has been my caregiver for 11 years, and I had already been through a few troubled years with her early on but stuck with her because I had faith in her as a person, and she's always taken good care of me. More importantly, I thought she had grown up a lot and her troubles were behind her. And as I previously mentioned I got to know her wife (who, believe it or not, still lives here but they are now separated not by her decision) and I felt she would be a further stabilizing force in her life. Unfortunately my PCA had other ideas and tore it all down very quickly, leaving this place, and the other two people who live here, in complete shambles.

                        She wasted no time in getting involved with somebody else, acting like nothing is wrong in the process, and trying to immediately insert this new person into the situation in place of her wife. I might actually be able to adjust except for the fact that this other person doesn't seem to have much interest in interacting with me, nor was she/is she prepared for the situation.

                        Worst of all the "suggestion" that is the subject of this thread strongly suggests to me that this new person isn't particularly concerned for my welfare. And my PCA is in total swoon/obsession mode over this new person which doesn't help. I had thought this kind of behavior was behind her but I was wrong and this time it?s having a much bigger effect on me because I actually live with her now.

                        She's probably going to erupt when it occurs to her that I have a real problem with what's going on around here, whether that's whenever I tell her I'd rather not go on this trip under the circumstances or whether I simply confront her with the whole issue. She thinks I'm wonderful (she always tells me stuff like that), is very protective of me, and often says she'll never abandon me no matter what and no matter who. None of that is meaning all that much right now though.

                        It's also probably going to send shockwaves through my entire family and cause all manner of trouble.

                        I didn't mean to blow this whole discussion up into something else but I guess a crazy suggestion like the one she and her new girlfriend had kinda demands explanation.

                        One things for sure, if it wasn't for the need of PCAs life as a quadriplegic would be much easier. Unbelievable.

                        Paul
                        C4-C5 Quad since 9/15/85

                        Comment


                          #13
                          Just reading this post you are answering your own question.

                          A true caregiver understands work vs vacation and in this case your care is #1st, her love life 2nd!

                          Let her plan and do her own trip on her $$$

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                            #14
                            Do not do it period.

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