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Spouse is tired of dealing with disability, but still loves me

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    #76
    Originally posted by SCI-Nurse View Post
    If you can get weekend help, that would also be good. You could arrange for them to come later in the morning on Saturday & Sunday so you still could have your AM snuggle, talk, or sleep-in before they come to get you up. Discuss that with your husband.

    (KLD)
    So this question is to anyone who has caregivers get them up in the morning. My husband brought up this point. He gets up, dresses and goes to start his morning if we have caregiver come in to get me up it takes 45 minutes. Mean while he is sitting at the table drinking his tea by himself, by the time I am up he needs to go to work. As we do share the same bed thats why caregiver needs to come after he is up. He is thinking he would rather do the caregiving which takes him 15 min and then we can have tea together before he goes to work. Any thoughts? suggestions? Not sure if there is a solution to this.

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      #77
      On weekdays we have a caregiver that comes in the morning (I do nights and weekends). I get up and start the coffee and usually share a cup with my partner and we have a short chat. Then I start work downstairs (I work at home) and his care assistant comes and helps him. Often I do small caregiving tasks like help transferring to the wheelchair, but usually he will wait until his care assistant comes. We have an iPad and a TV in the bedroom so he has something he can do, but he usually likes to chill out and drink his coffee. This works well for us. Why not just have your cup of tea together in the bedroom?

      Originally posted by ibi View Post
      So this question is to anyone who has caregivers get them up in the morning. ... Any thoughts? suggestions? Not sure if there is a solution to this.
      Partner of an incredible stroke survivor. Limitations: hemiparesis and neglect (functional paralysis and complete lack of awareness on one side). Equipment: TiLite ZRA 2 and 2GX, Spinergy ZX-1, RioMobility Firefly. Knowledge: relative newbie for high-level equipment (2012), but willing to try to help others who are new with similar limitations (definitely not a guru, but inquisitive).

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        #78
        Originally posted by elarson View Post
        On weekdays we have a caregiver that comes in the morning (I do nights and weekends). I get up and start the coffee and usually share a cup with my partner and we have a short chat. Then I start work downstairs (I work at home) and his care assistant comes and helps him. Often I do small caregiving tasks like help transferring to the wheelchair, but usually he will wait until his care assistant comes. We have an iPad and a TV in the bedroom so he has something he can do, but he usually likes to chill out and drink his coffee. This works well for us. Why not just have your cup of tea together in the bedroom?
        Excellent point! My hubby, when home, makes the coffee and brings to me in bed..we talk and he helps me stretch feet..by pushing back on them..with one hand holding his coffee cup! multi tasking...while I lounge Then I do the rest of the stretching myself..raising leg to chest etc...it is a ritual I miss when he is gone and I have to get up and make my own coffee lol!
        "The trick is in what one emphasizes. We either make ourselves miserable, or we make ourselves happy. The amount of work is the same.” ~Carlos Castaneda

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          #79
          Originally posted by elarson View Post
          On weekdays we have a caregiver that comes in the morning (I do nights and weekends). I get up and start the coffee and usually share a cup with my partner and we have a short chat. Then I start work downstairs (I work at home) and his care assistant comes and helps him. Often I do small caregiving tasks like help transferring to the wheelchair, but usually he will wait until his care assistant comes. We have an iPad and a TV in the bedroom so he has something he can do, but he usually likes to chill out and drink his coffee. This works well for us. Why not just have your cup of tea together in the bedroom?
          That doesn't work having tea in the bedroom because the caregiver is getting me up at the same time he or we would have tea. He gets up at 730 and caregiver arrives 730.

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            #80
            What is more important, having tea together or maintaing some separation of care giving and intimacy? I think if you can, you should pretend your spouse is unable to do your care unless it's an emergency.
            "The sweet is not as sweet without the bitter"
            ~"Vanilla Sky"~

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              #81
              Originally posted by Lorrie View Post
              What is more important, having tea together or maintaing some separation of care giving and intimacy? I think if you can, you should pretend your spouse is unable to do your care unless it's an emergency.
              Of course I want our relationship to be husband wife and want intamacy over caregiving, I never realized how much the care giving can affect relationships and how it was affecting ours. We have just always had him as my part time care giver, the mornings were always his to get me up. I am trying to change things so he is not my care giver at all except for emergencies. I was just looking for suggestions from others as to the morning care and how I could adress what my husband's concern was which was this. He gets up, dresses and goes to start his morning if we have caregiver come in to get me up it takes 45 minutes. Mean while he is sitting at the table drinking his tea by himself, by the time I am up he needs to go to work. As we do share the same bed thats why caregiver needs to come after he is up. He is thinking he would rather do the caregiving which takes him 15 min and then we can have tea together before he goes to work.

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                #82
                He could bring you tea in bed, and sit there and talk before going to work, and let the caregiver in as he leaves.

                Alternatively, he could get up when the caregiver arrives, shower, shave, get dressed, check his e-mail or read the paper, and prepare breakfast, which would normally take about 45 minutes for most men, while the caregiver is getting you up. That is what my dad used to do when my mom's caregiver was not live-in. He used the other bathroom so there was no problem with conflicts for bathroom use. Breakfast was ready for my mother when she got to the family room, and ate with my dad.

                (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.

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                  #83
                  Originally posted by sherocksandsherolls View Post
                  I didn't mean to offend you - maybe I should not have made that suggestion. Keep in mind, I do not know your situation like you do..so it may not apply to you...but may apply to others. Many times when someone is so focused on the negative of a situation..that is truly a choice in my opinion. This choice is serving a purpose. What is he gaining from making this choice? "I hate the chair" I hate what we can not do"..to continually allow himself and his mind down that line of thinking. If one person is trying so hard to be positive and trying to force the other to see the good in their life..in my opinion is a no win situation. He needs to come to that realization on his own. It is also very harmful to you to be continually trying to make him feel better about your situation..it is a stress and a burden to you. SOmetimes, letting go...and seeing what returns is better than using all your will and energy to maintain it.
                  I do agree with you that looking at any situation whether it be positive or negative is a choice. I also believe negative thinking leads to negative behaviour and ultamitly negative actions. I also feel that in many situations weather its work, school or outings people in general tend to focus first on the problems or difficulty of that situation and then go on to the positive outcome. I do feel my husband is in a state of mind where he is focusing on the negative of our situation and am hoping with support from the private caregivers forum he can express his feelings to others that truly understand all issues of the caregiving, barriers and things they miss and that he can gain some support to help him. He has had major sleeping (lack of) issues for a long time and is exhausted mentally which plays into his thoughts. We are working on the sleeping part with a suggestion from our therapist to sleep away from home in the motorhome to try and change his sleeping pattern. To show him he doesn't need to be on call 24/7. For a long time there I was always waking up at 1:00 which disrupted his sleep. But things changed once we got a memory foam bed, I am much more comfortable and can change my position without disturbing him. I will continue to give it some thought as to a seperation to see if it could help our current situation.

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                    #84
                    Yep, tea in bed is best solution and most intimate before your assistant arrives
                    "The sweet is not as sweet without the bitter"
                    ~"Vanilla Sky"~

                    Comment


                      #85
                      Don't separate, that's just bad advice. You'll never get back together if you do. Fight to stay together.
                      Wife of Chad (C4/5 since 1988), mom of a great teenager

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                        #86
                        I told my cousin about the caregiver forum and he would like to try to get his wife involved in it how would he do that?

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                          #87
                          Originally posted by zillazangel View Post
                          Don't separate, that's just bad advice. You'll never get back together if you do. Fight to stay together.
                          Yeah, the D-word isn't an option. Unless it is.
                          Blog:
                          Does This Wheelchair Make My Ass Look Fat?

                          Comment


                            #88
                            Originally posted by elizabeth422 View Post
                            I told my cousin about the caregiver forum and he would like to try to get his wife involved in it how would he do that?
                            Is he a CC member?
                            I would advise him to join, establish himself and then request to join.

                            Comment


                              #89
                              Originally posted by swharris View Post
                              LOL. I got called a communist yesterday during a spirited discussion of the concept of noblesse oblige and the fact that most rich people fell no compunction to give. I retorted "well, better than a corporate fascist. We should just do to you like they did to Mussolini." Plenty of gas stations near me ;-P

                              Be proud of your leftism! It's not a dirty word.
                              You have clearly not met my cabdriver. He has MAWGS (Middle aged white guy sydrome). And has to bitch to me about the election! He swore Nov. 6 was the worst day of his life, when we re-upped w/ Obama. I said "I know that feeling. Had it in ;'04..."

                              He says we're fully
                              Communist now LOL.

                              These entitled dudes. Panties in a twist b/c somebody (female, non-white, better qualified) MIGHT get the "Jobs" that are their birthright. And their Duderight.
                              Blog:
                              Does This Wheelchair Make My Ass Look Fat?

                              Comment


                                #90
                                Originally posted by elizabeth422 View Post
                                I told my cousin about the caregiver forum and he would like to try to get his wife involved in it how would he do that?
                                Is she a caregiver to an SCI?
                                T12-L2; Burst fracture L1: Incomplete walking with AFO's and cane since 1989

                                My goal in life is to be as good of a person my dog already thinks I am. ~Author Unknown

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