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Thread: Boxes

  1. #11
    Forum Member Lynne K's Avatar
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    Well said Kayleigh. I'm similarly as determined as I ever was to show and speak respect, love and gratituude. I wish that my (mostly) lovely husband could do likewise. Our move has stressed him out. He has a tenancy to to get moody and moan at absolutely every little thing if he's feeling stressed. He has always taken his stress out on the nearest, and sometimes easiest target. In the past I shielded his daughter from this, taking her away from him and explaining that its best to give him space. But the kids have gone now. It's just us two. So who do you think takes the verbal negativity? You got it, yours truly and he has a nack of getting to one's soft spot. I could really do without this.

    I'm trying to stay positive. But it's been getting to me in the last week since he said some rather upsetting things.

    He isn't going to change at his age, when he's been doing this all of his life. I've tried to talk to him about this but any subsequent improvement is short lived until the next time.

    I'm feeling iffy about writing all this but thought that I'd put the other side i.e. A polite, respectful MND sufferer and a sometimes nasty husband/carer. We aren't all the same and we/I muddle through as best we/I can. Lynne
    Last edited by Lynne K; 13th December 2018 at 11:33.
    ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my ballance.
    I'm staying positive and taking each day as it comes.

  2. #12
    Forum Member Boiler68's Avatar
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    Thinking of you today Pen. I hope Ezri gets the funeral she wanted/discussed with you. RIP x

  3. #13
    Forum Member Boiler68's Avatar
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    Hello Lynne

    I know how you feel about washing your laundry out in public but of course you are right about the other side of it ie. that the carer can be the horrible one and the MND sufferer the nice one. It can go both ways. Perhaps you are in a worse situation because the carer can actually physically get up and leave when things get rough and you just cannot. I often feel guilty after we've had a row especially if he struggles to get his words out (he can get some out very well!) because he will always be at a disadvantage....it's just so horrible for both and this disease has both parties trapped. Do you have family close by? Good friends? I hope you do. I have 2 good friends but only see them a couple of times a year because I have to go out to see them. The setup here is that the one living room and kitchen are not separated so he is on top of me all the time (and me him) and there isn't a separate room to sit down with visitors/guests. Difficult.
    I hope you have a nice Christmas in your new home and are settling in there. xxx

  4. #14
    Forum Member Lynne K's Avatar
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    I very rarely get angry back at him. I try to chill him out sometimes but he reacts dreadfully to that. So more often than not I ignore him. But things directed at me even if I try to ignore it, can hurt deeply. I'll send you a private message example. My youngest daughter lives near to our previous home, about 20 minutes cat journey from here. I've been seeing her once or twice per week since we moved here. We have lots of joint friends and two have lost people to MND, one her sister and the other his wife. But I couldn't talk to them about relationships. My daughter was here a couple of days ago and I burdened her with how I'd been feeling because of my husbands moods and bad attitude. I got upset in the telling. Not a good feeling but it got it out which needed to happen at some time or other. I don't like to say much to her because she has built a good relationship with my husband. Her dad (my husband of 30 yrs and father to my 4 children) died a couple of years ago. So having a relationship with Steve is good for her I think. She was about 15 when we left her dad and I wouldn't want her to think that this marriage is shaky. I took her dad's alcoholism for many many years before the straw that broke my back. The years of drinking ruined his body. Not nice for me to see but more so his kids. I'm 18 yrs on from that.
    ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my ballance.
    I'm staying positive and taking each day as it comes.

  5. #15
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    Wow, what a day. Deep breath...

    Was an early start, had to be at the funeral home before 8.

    When I met Ezri for the first time in person, it was so I could give her a lift to a party we were both going to. Giving her rides to places turned into a theme of our friendship for the past 11-1/2 years. So much so, I often introduced myself as Ezri's Chauffeur. When we were planning Ezri's funeral, I asked if I could drive her from the funeral home to the crematorium, and the funeral director said it wouldn't be a problem at all.

    Today, was that day.

    I arrived at the funeral home in Thetford at 07:45, and drove the hearse to the Bury St Edmunds Crematorium. And, I just have to say, a hearse is a pretty sweet ride.

    After we returned to Thetford, I visited all of Ezri's immediate family. Went to her brothers for coffee, then had a catch up with her parents, then spent some time with her son and daughter before driving back to Norwich. It was a lovely, if emotionally draining, morning.

    What I didn't expect, was how tired I would get on the drive home. So much so, I almost pulled over for a nap. When I did get home, I flopped down into bed, and crashed for an hour. Once I woke up, it took me another hour, and a coffee, before I was functional.
    I then spoke to a lady in a lovely flooring shop about some flooring for my living room, before going to the new house and fitted the carpet in my bedroom (which I had bought from the same wonderful lady).

    This new place is going to take some SERIOUS redecorating. To say the paint scheme in the bedroom is garish, is an insult to the word garish. It's going to take 3 or 4 coats of paint to cover it. There are some colours, I think, that all paint manufactures should just refuse to produce for the sanity of humanity, and they can be found on the walls of my bedroom. The housing association has given me £175 to use on decorating the place, and it's going to need every penny of that.

    I've just shoved down some left over pizza, and should really tackle some of the boxes covering the floor. Would be nice to not have to step over them to move. But, I'm going to take a few minutes and check my characters in World of Warcraft first. I mean, a girl has to have her priorities.

    Pen
    Hanging in there, one day at a time.

  6. #16
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    Bless you, must have been a very difficult day for you all x

  7. #17
    Forum Member Kayleigh's Avatar
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    Hello Pen,

    I am glad the day went well. It must have been very emotional and tiring for you, and so make sure that you have a well deserved rest.

    Enjoy getting settled into your new home. It sounds like your interior design skills will be very well utilised, but at it least you can change things so that they are more in keeping with your preferred style. You might be able to get some bargains in the January sales!

    Take care,

    Kayleigh x
    We are a fabulous forum family - the precious bond we all share is powerful and strong!

  8. #18
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    Rest in Peace Erzi.
    .

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