1. How i spend my days

    Posted by jaye2080 at Sun Oct 28, 2012 10:12 am

    Once upon a time, and it seems so long ago now, I had a husband i could rely on for everything. He could mend anything we put in front of him - cars electrics plumbing jewellery or toys - he fixed it all. And it wasn't just the family, but neighbours, friends, friends of friends, local businesses and even the odd stranger who had heard came to my husband to get things fixed. He was the one who could work out how to use the gadgets while i was still reading page one of the instructions.
    So it's hard to cope with him now when he gets so confused.
    He decided he wanted a mobile phone. I got him the first phone about 5 years back, and every day for 3 years I showed him how to use it. I got a much simpler phone for him and still had to show him every day. 2 months back i bought him the simplest phone on the market, big buttons and a nice clear display and i set it up so that he only had to press one button to ring me. Can I make it any simpler than that? Seems not, every time he touches it he manages to wipe out all the settings and phone number. He can't use the darn thing but insists on taking it everywhere with him. I think that in all those years of trying he's managed to make about 6 phone calls!

    As for the TV remote, well lets not go there, it's a nighmare!

    This phone lark just about sums up my life with hubs these days. He doesn't have dementia, it's the epilepsy thats turned his mind into mush, either that or there is something else they haven't found yet.
    I'm married to this man, i'm supposed to be his wife, but i don't feel like a wife, more like a nanny to a child thats going backwards.

  2. Re: How i spend my days

    Posted by swissmiss at Sun Oct 28, 2012 2:46 pm

    The only way I deal with it Jaye is to tune into and feel the soul....it is hard when it is your husband who you once had a totally different relationship with but remember that one day you will again have that relationship in spirit. All you can do is what I do I think and that is to meditate and reach deep within yourself for that calm strong place and try and find ways of sharing fun if not common sense..no matter how daft and abstract it is! Ali laughs and I laugh but sometimes I wonder if we are laughing at the same thing..but it doesnt matter because we are both sharing the same emotion. It has always helped him if I share his emotions ..it makes a strong connection. I have had to let go of what I want and go with what I have got. Another thought is that my mother who has severe Dementia is close with me in spirit and with our loved ones...apparently because of her Dementia she spends some of her consciousness in spirit so perhaps that is a way of connecting with our loved ones whose minds are elsewhere? I dont mean as you know to deny the problem but sometimes we cannot change and it is a case of having to find a way of living with it. Or not and give up and go...wherever?
    Karen xx :)

  3. Re: How i spend my days

    Posted by Flowerpower at Mon Oct 29, 2012 7:18 pm

    That must be so hard for you Jaye. My DD repeats herself a lot and asks the same questions over and over again and just when you think she's got it ..... she is back at sqaure one! :lol:

    We are so totally used to it after nearly 30 years that we don't think about it most of the time but it is always odd when people meet her for the first time and she appears not to have any probs.

    By the way - This board is painfully quiet isn't it?

  4. Re: How i spend my days

    Posted by jaye2080 at Mon Oct 29, 2012 10:29 pm

    I actually think that living with what i've got and neglecting my own needs and wants for so long is whats brought me to this point Karen. It's not that i want to make any earth shattering changes, but it would be good to have something to look forwards to in my day, something that makes getting out of bed worth the effort.
    Giving up and just running away sounds oh so tempting, but I know that it never solves anything, only swaps one set of problems for another.

    Flower, hubs is worse than telly for repeats, i can listen to the same conversation day after day, i've learnt to switch off from it. Most days i can get through hubs monologues with a few well timed mmm's and nnnn's :)

  5. Re: How i spend my days

    Posted by swissmiss at Tue Oct 30, 2012 3:11 am

    I think we carry on long beyond what we have the reserves for..expanding our capacity to cope beyond what is sustainable. I am told that not many would have done what I have done so presumably that means many choose not to? What choices are there for you Jaye?
    Karen x

  6. Re: How i spend my days

    Posted by jaye2080 at Tue Oct 30, 2012 12:28 pm

    I suppose we all have choices, mine all seem to have strings attaced to them. I could go out in an evening when there's less chance for hubs to get into mischief, but I don't have a car and buses stop at 4.30 which can only mean a taxi into town, and at nearly £20 a night it's an expensive couple of hours. So i have the choice - a couple of hours a week or would i actually like another break next year, i can't do both.
    Sometimes the choices i make are influenced by hubs condition, but as often as not they are made because of other circumstances, money, location and inclination, so i can't blame hubs or his condition for everything. What i can blame him for is his total refusal to join in with anything or have a sitter so that i could go out for more than an hour with peace of mind.

  7. Re: How i spend my days

    Posted by swissmiss at Tue Oct 30, 2012 1:26 pm

    Are you saying Jaye that there are no other living situations..I dont know what they might be...where life would be better? Maggie suggested to me last year to look at some sheltered living where there is help with care but thats not appropriate for us...might it be for you?
    Karen :)

  8. Re: How i spend my days

    Posted by suejane at Wed Oct 31, 2012 8:38 pm

    Hi Jaye i think maybe sheltered housing could work?I wish i had something like that for son and myself, hubbie and son dont get on and im left in the middle all the time, we have no family to help and no friends although we do have sons very supportive football club.Hubbie happily leads his own life and im glad for him, but when it comes to care theres only son and myself.Hi swissmiss how are you all?I wish you well jaye xxx :)

  9. Re: How i spend my days

    Posted by swissmiss at Wed Oct 31, 2012 11:06 pm

    I am trying to not get worked up at the moment as it makes me feel faint and dizzy. Tomorrow I am trying Reflexology combined with counselling and Reikh and who knows what...new lady who I hope can help. Waiting for results of tests and follow up at the hospital but I know in my heart its anxiety. Meanwhile we are contemplating buying a new home..just trying to be sure its the right place and the right home. We are virtually isolated here. We are barely going to spiritual centres now although we are so very much aware of our loved ones in spirit with us. I have been to a couple of discussion groups at the church about beliefs..its OK but the vicar is limited since she gave herself to God at the age of 7 and hasnt really questioned anything since!! Took us out for a meal early this evening and catching up with TV as we havent been watching it much recently.
    How are you Jane??
    Karen xx :)

  10. Re: How i spend my days

    Posted by gaygal14 at Thu Nov 01, 2012 9:53 am

    Good morning everyone,, have just caught up with all your post news,, Jaye,, do try for sheltered housing, David and I live in a lovely 2 bed bungalow,on a lovely estate, we have 24/7/365 health care pull cord system, and lovely site managers although not live in, try getting your GP or your local MP involved our local MP here in Norfolk helped us,, as did our Dr,,explore this option, look on Google,, we are with Victory Housing,, but there are others such as Housing 21, you will have all the help that you require if you go for sheltered housing, or as it is now refered to as Independent living,, Good luck with your search,, take care,, Love Maggie xx :D:D:D:D
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