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    Care Homes

    I believe I am getting to be too much trouble/work for my wife and wondered if anyone has moved into a care home to continue their life?
    The stress I am placing on her is showing in her attitude towards me, which seems no longer to be like a wife, but like a carer.
    I have not had a carer look after me before, but assume her actions would be similar.
    As I deteriorate, I feel like I am more of a nuisance for her and a weight around her neck.
    I spend the majority of my time sat without talking and sleep in another bedroom, so living on my own would be no different, apart from the help I would need to dress, prepare food and shower/dry. I should say I am very thankful my wife/carer does help me with all these things, and always thank her for it.
    Perhaps I should just be grateful I have someone doing these things and accept the moaning.
    Diagnosed 2nd Jan 2020
    Both arms/shoulders affected, left worse than right.
    Progressive Muscular Atrophy suspected

    #2
    You deserve a bloody medal mate. 👍x
    Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

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      #3
      His wife deserves a medal. And me. Stephen suggested I put him in a care home. I told him to shut up and put up with the great care I'm giving him. ☺ look think about it marriage is about caring. Its not all roses and all the other stuff. sometimes it's easy and sometimes it's a pain in the butt. I can be wonderful one moment and feel lile a banshee the next. I love him and hate him.
      it's something you will have to talk about. Next time Stephen brings up the idea of the care home I will probably say yeah go on ****** off. I'll drive you there. I'm not saying it won't happen at sometime. Perhaps you both need a bit of a break?
      Denise xxx

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        #4
        If you truly love someone you can let them go. 😉x
        Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

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          #5
          He also forgets to say please and thank you. I get my own back by having cold hands 😄

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            #6
            Originally posted by denise View Post
            His wife deserves a medal. And me. Stephen suggested I put him in a care home. I told him to shut up and put up with the great care I'm giving him. ☺ look think about it marriage is about caring. Its not all roses and all the other stuff. sometimes it's easy and sometimes it's a pain in the butt. I can be wonderful one moment and feel lile a banshee the next. I love him and hate him.
            it's something you will have to talk about. Next time Stephen brings up the idea of the care home I will probably say yeah go on ****** off. I'll drive you there. I'm not saying it won't happen at sometime. Perhaps you both need a bit of a break?
            Denise xxx
            Yes, she deserves a medal, I certainly agree as what she does, and that is everything now, is beyond her paygrade, hence my request.
            It seems, like you, she can be wonderful one moment and horrible the next. She don't want to talk about it, as she says it upsets her.
            If I had somewhere to go, I would be there by now.
            Diagnosed 2nd Jan 2020
            Both arms/shoulders affected, left worse than right.
            Progressive Muscular Atrophy suspected

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              #7
              Thanks for posing this question, Beemer. My wife and I have discussed this occasionally and I wondered how many people end their days with MND in a care home. I get the impression that the majority of people who have partners stay at home with varying amounts of support from paid carers.

              We also both occasionally get a bit irritated by each other, usually at the end of the day when we're both tired. I wouldn't go as far as angry, just a bit 'snappy'. My wife says she's not angry with me, she's angry with the disease because of what it's doing to us. I'm a fairly peaceful and non-confrontational person and I think my 'anger' comes from trying to communicate with her.
              Each day is made easier with a bit of humour.

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                #8
                Is this something that we as MND sufferers would have to pay for as my wife will have to work to pay mortgage ect.... once my company stop paying me as we wouldn’t be able to afford house.

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                  #9
                  Hello Beemer,

                  I really feel for you on this one. It sounds like you are a really loving and caring husband , concerned about your wife. The shift from from partner to carer is hard for both parties to manage.

                  I always try to thank my husband and show appreciation and he is incredibly patient... I know I'm lucky to have this! However, its hard not to resent being so reliant on someone for everything when you yearn to be the strong, independent person you used to be. I'm aware that he needs a break which is impossible in COVID times and sometimes I need to give myself a good talking to ! ( I don't always listen to myself !)

                  Its so important to talk with each other and we usually manage to have a laugh.... usually with dark humour which I'm sure would appall others!

                  Take care of yourself,
                  Love Debbie x

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                    #10
                    Beemer Living with this disease puts a strain on any relationship and I take my hat off to all the dedicated partners. I have always hated the term “carer” when it refers to a loved one. Have you considered a personal assistant? Compared with care home costs and the lack of experience in dealing with the symptoms of MND it may be a better option. This is something I investigated for the time when I need assistance. You can check your council website and PA’s often advertise their services under social services, usually with a resume.
                    I’m going to do this even if it kills me!

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                      #11
                      Unfortunately we argue on a daily basis, and it has been going on for many months. I really do appreciate the help she gives me, however, she deserves a better life than this. We argue because I believe she does not understand that although my limbs are useless my mind is still all there.
                      I have tried the non confrontational method of just letting her do what she thinks is best, but I cannot stand back and see money go down the drain because I can see a problem, I say something, and Mrs Angry appears, several days later, she is back to being Mrs Nice, until the same problem arises, a vicious circle.
                      I don't have close friends or family I can talk to, unlike my wife, who has family close by.
                      Diagnosed 2nd Jan 2020
                      Both arms/shoulders affected, left worse than right.
                      Progressive Muscular Atrophy suspected

                      Comment


                        #12
                        Originally posted by Barry52 View Post
                        Beemer Living with this disease puts a strain on any relationship and I take my hat off to all the dedicated partners. I have always hated the term “carer” when it refers to a loved one. Have you considered a personal assistant? Compared with care home costs and the lack of experience in dealing with the symptoms of MND it may be a better option. This is something I investigated for the time when I need assistance. You can check your council website and PA’s often advertise their services under social services, usually with a resume.
                        I have not considered a personal assistant because I think that would be a slap in the face to my wife who currently cares for me, and most likely the cause of our next argument.
                        Diagnosed 2nd Jan 2020
                        Both arms/shoulders affected, left worse than right.
                        Progressive Muscular Atrophy suspected

                        Comment


                          #13
                          I could suggest counselling that might work. Can't say it appeals to me but it works for some. Thing is you both need to talk. We sometimes, ok frequently argue, then try and talk about issues. Like deb says humour usually gets us through. Sometimes I feel really tired and fed up and it gets too much. I don't know if I could cope with an assistant, perhaps a cleaner, suppose it might be a help. Someone else in the house would be someone else to talk to.
                          if you went into a care home that might not suit you and they ain't cheap.
                          I don't know your wife so I can't really comment but she does have a lot to worry about and she might not want to share her concerns because she might upset you or it ends in an argument.
                          most of my days feel like I'm not getting much done. I see everything piling up and it feels physically and mentally exhausting.
                          it's not easy for any of us. This morning I got annoyed because he asked me to butter his toast. Stupid really then I get annoyed because I'm annoyed at my response. Thing is I have to be Florence nightingale when I feel like evil Edna. Ive even had to say to him just go away. Leave the room go away because im not coping.
                          you both need to find a path but know there could be a lot of pot holes in it.
                          Denise xxx

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                            #14
                            Beemer The care burden of MND is immense and can rip a relationship to shreds. I can see the toll it has taken on my husband, who has Jekyll & Hyde phases too, and it is non-stop. I have daytime carers (he works) but his time is *never* his own - I have to be considered before he does anything, which must be draining. (I'm surprised I'm not under the patio by now 😆)

                            But... your wife does not have to do all the care on her own and, really, she doesn't get to be angry and aggrieved that the care burden is all on her, whilst simultaneously not allowing outside help 🤨

                            I have been in a care home (short-term, between care agency contracts) and was 40yrs younger than most residents. It was tough, mostly because I missed my kids.

                            What are the chances of you both having a heart-to-heart chat? Everybody deserves to live in a respectful, non-threatening environment. I'm sorry you're living with such hostility.

                            Big hug to you.
                            Love Ellie.
                            ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                            Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

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                              #15
                              Mick's MND nurse once suggested to us the local hospice. Mick could have had a day a week there, activities, lunch etc, they would have picked him up in the morning and brought him back. It wasnt something he was interested in but I later met a man at an MND charity in the area and his Wife went every week and enjoyed it. Maybe there is something like that in your area, it would be a day off for you both

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