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Thread: In sickness and in health...

  1. #1
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    In sickness and in health...

    I've been known to recommend to young couples that if they want to see how compatible they are, they should try to assemble a piece of IKEA furniture together. I've always felt it's a good way to see if you can work well with your partner.

    I'd like to amend that test.

    IKEA furniture test is the 'working well together test'. But now I have a new test. The 'In Sickness and Health' test.

    Before making a life long commitment to someone, I recommend supporting them, and likewise they supporting you, through a pretty intense sickness or a time when you can't care for yourself. Now, I'd never go so far as to recommend that you break your partner's arm just so you can do this test. That's probably going to far. But, if the situation occurs, take full advantage of it to see what kind of a patient they are.

    How attentive are you to their needs?
    How frustrated do they get at you when you don't get things just right?
    etc. etc.

    OK, so caring for someone with MND is defined as 'complex care', and it really is pushing everyone's limits. I know now I'm not a carer. I care for people, and I like helping when I can, but being a full-time carer for someone with the level of needs MND presents, wow, yeah, no, not me.

    This is something I've never planned for, or prepared for when I promised my friend I would support her till she was back on her feet. Obviously that is never going to happen. But I am going to support her for as long as she needs me, regardless of how sarcastic she gets in her replies to simple questions.

    Generally, things have been pretty good between us lately. I'm making more of an effort to support her emotionally by being more attentive to her needs. Meanwhile, she's being her same old sarcastic, short tempered self. I'm teaching myself how to let comments roll off of me like water on a duck, and she's practicing being surprise at the sudden change in my level of caring for her. I'm trying to bring issues out and discuss them as they happen, instead of letting them fester, and she's almost brought herself to apologise once or twice. Almost.

    I've learned that if she is the one making valid points, she will drive the point home till I've apologised at least 6 times. However, if I'm the one making valid points, then she's really good at saying 'just drop it'. Not quite an apology, but I'm working on her. I actually got a 'never mind' out of her last night.

    I hate arguing with her. She's an expert at first diverting the subject to something slightly different, confusing the topic with points not directly relevant to the discussion and then turning the table so the blame is on me. I've never mastered a counter argument for this technique. I guess I've always been to ready to apologise, take the blame and then change my behaviour. But I'm learning to stand up for myself more.

    I'm sorry, I know I'm painting a dark and one sided picture here. Probably not fair as she can't physically come online and put forward her side of the story, which would of course make me look like the bad guy.

    I do love and care for her very much, and I can't imagine what it would be like to be bed bound to this degree for as long as she has been. I do sincerely wish we had taken more advantage of the time when she was mobile, to get out more. She blames all that on me, but it wasn't really all my fault. She forgets all the weekend I wanted to take her out, but she said no. Sorry, going back to the blame game. Shame on me.

    Her daughter is getting married at the end of September. My hope is that she will not only be around for the wedding, but that we'll be able to get her there so she can see her daughter get married. Fingers crossed.

    Pen
    Hanging in there, one day at a time.

  2. #2
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    Join Date
    Sep 2016
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    2

    It is very hard caring

    Quote Originally Posted by Penwiggle View Post
    I've been known to recommend to young couples that if they want to see how compatible they are, they should try to assemble a piece of IKEA furniture together. I've always felt it's a good way to see if you can work well with your partner.

    I'd like to amend that test.

    IKEA furniture test is the 'working well together test'. But now I have a new test. The 'In Sickness and Health' test.

    Before making a life long commitment to someone, I recommend supporting them, and likewise they supporting you, through a pretty intense sickness or a time when you can't care for yourself. Now, I'd never go so far as to recommend that you break your partner's arm just so you can do this test. That's probably going to far. But, if the situation occurs, take full advantage of it to see what kind of a patient they are.

    How attentive are you to their needs?
    How frustrated do they get at you when you don't get things just right?
    etc. etc.

    OK, so caring for someone with MND is defined as 'complex care', and it really is pushing everyone's limits. I know now I'm not a carer. I care for people, and I like helping when I can, but being a full-time carer for someone with the level of needs MND presents, wow, yeah, no, not me.

    This is something I've never planned for, or prepared for when I promised my friend I would support her till she was back on her feet. Obviously that is never going to happen. But I am going to support her for as long as she needs me, regardless of how sarcastic she gets in her replies to simple questions.

    Generally, things have been pretty good between us lately. I'm making more of an effort to support her emotionally by being more attentive to her needs. Meanwhile, she's being her same old sarcastic, short tempered self. I'm teaching myself how to let comments roll off of me like water on a duck, and she's practicing being surprise at the sudden change in my level of caring for her. I'm trying to bring issues out and discuss them as they happen, instead of letting them fester, and she's almost brought herself to apologise once or twice. Almost.

    I've learned that if she is the one making valid points, she will drive the point home till I've apologised at least 6 times. However, if I'm the one making valid points, then she's really good at saying 'just drop it'. Not quite an apology, but I'm working on her. I actually got a 'never mind' out of her last night.

    I hate arguing with her. She's an expert at first diverting the subject to something slightly different, confusing the topic with points not directly relevant to the discussion and then turning the table so the blame is on me. I've never mastered a counter argument for this technique. I guess I've always been to ready to apologise, take the blame and then change my behaviour. But I'm learning to stand up for myself more.

    I'm sorry, I know I'm painting a dark and one sided picture here. Probably not fair as she can't physically come online and put forward her side of the story, which would of course make me look like the bad guy.

    I do love and care for her very much, and I can't imagine what it would be like to be bed bound to this degree for as long as she has been. I do sincerely wish we had taken more advantage of the time when she was mobile, to get out more. She blames all that on me, but it wasn't really all my fault. She forgets all the weekend I wanted to take her out, but she said no. Sorry, going back to the blame game. Shame on me.

    Her daughter is getting married at the end of September. My hope is that she will not only be around for the wedding, but that we'll be able to get her there so she can see her daughter get married. Fingers crossed.

    Pen

    Hi Pen

    It is extremely hard caring for someone 24hours a day. I am a nurse and was known for my patience etc. Fast forward to now and I get angry with my husband quite easily. Not about the things I have to do but when he makes comments about things on the floor, cat fluff that I havenítt Picked up! I get upset because I am doing everything else in the house so why canít he just keep quiet about the things that arenít quite right? I have to wake up 7-8 times a night to turn him, plus all the day time stuff. New PEG last week so more things to do with that. I think the niggling things in his personality that have always been there are accentuated with illness. Of course he is frustrated not being able to do things himself but I say he shouldnít be mean to me.

    So my advice is try to let things go over you , if you get cross you may feel like me worse for doing so. Try to get rest and any respite if available. My husband good to day hospice one day a week and this helps.

    Donít have regrets of what you havenít done; enjoy reminiscing of what you have done. We like music so I got my husband to download on Spotify a few songs from all the live gigs we have been to. He is still able to use computer, watch tv etc. I try to make time to sit with him watch a programme together , even if this then means more fluff left on the floor!

    Take care; keep strong

  3. #3
    Forum Member
    Join Date
    Dec 2016
    Location
    Norwich, UK
    Posts
    143
    Thanks for the encouraging words Eliza,

    It is tough, and tough for the people we care for too. I find it frustrating that I am doing a lot behind the scenes, that she doesn't see, but, like your husband, will have a go at me if her rug hasn't been vacuumed often enough.

    What really winds me up, is when we are trying to do something for her - bed pan, change dressing, give medicines, or something that takes 100% of our attention. And in the middle of this, something isn't going quite right, so we stop and try to figure out what it is. And in that process, one of us accidentally uses the wrong word, or didn't say please, or moved her hand without asking her first, and she will then take 5-10 minutes to berate us for getting that little thing wrong, when really we could be getting on with the job at hand, and have a discussion about semantics later on.

    Also, one of my new sayings is, 'everything, all at once, always'. Last night, we did a bed pan, and 2/3 of the way through the process, she was struggling to breath. So, off with the mask, use the suction machine, nasal spray, change padding for the straps, clean face, more suction, clean lips, apply blistex, etc. etc., and eventually get the mask back on. And, of course we are now late for meds, so do meds. And then her shoulders aren't quite right, and her neck hurts, so stop doing meds and deal with that. Eventually, an hour or so later, we finish up with the bed pan task.

    Oh, and, the rug still needs to be vacuumed.

    Makes one just wanna scream!

    Pen
    Hanging in there, one day at a time.

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