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Carers UK Forum • First Post
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First Post

Posted: Tue Jan 22, 2013 7:55 pm
by Suan
As they say the first is the hardest to write. My husband has fronteral temporal dementia, he is 67 and we had the diagnosis 8 years ago I am 58. In the last few months there has been a dramatic change, he has OCD he will spend up to 4 hours at a time sorting out clothes moving them from one place to another and can never find anything, pairs up and wears odd socks, does not always change his clothes and puts dirty clothes away in odd places, I could go on and on now I have started but better not To lots of people he is perfectly normal and they could think slightly eccentric, even some family members say "He's alright" they do not live with him 24 hours a day 7 days a week. I have just booked 9 days away to see our son in USA graduate he cannot be left alone and yesterday agreed he would be happy to go into respite, today is a different story as yesterday did not exist other than it was christmas day its like treading on eggsells, he imagines people are here, has conversations with people who don't exist' and sometimes I think it is me that has the problem, gosh not bad for a first post and now I have started could go on and on but will save it for another time - maybe - Sue

Re: First Post

Posted: Tue Jan 22, 2013 7:59 pm
by Lazydaisy
welcome to the forum Sue.x

Re: First Post

Posted: Tue Jan 22, 2013 8:07 pm
by tracie
Welcome

Re: First Post

Posted: Tue Jan 22, 2013 8:17 pm
by Suan
Thanks to both of you how much can I write and moan about!!!! There is so much I feel I just need to get out is there a limit!!!!

Sue x

Re: First Post

Posted: Tue Jan 22, 2013 8:21 pm
by india77
Hello and welcome Image

Re: First Post

Posted: Tue Jan 22, 2013 8:43 pm
by jaimemarie
Welcome Sue
The first words I have felt have been the hardest to write not knowing where to start but once you start you can't stop I have only just joined in the last few days but have enjoyed reading through other peoples stories and gaining advice off others , sometimes it's easier to pour your heart out to complete strangers .
jaime xx

Re: First Post

Posted: Tue Jan 22, 2013 9:07 pm
by Squirtymcburty
Hi Sue
Welcome, I did my first post today too, it is good to get some things off your chest isn't it Image
My husband has MND, and most of the time I can hardly tell what he is saying, but it seems to be my fault? I know exactly what you mean about the egg shells.
I hope everything works out for your break. We need them - I really need to go away and am waiting to hear about respite, fingers crossed.

Tanya xx

Re: First Post

Posted: Tue Jan 22, 2013 9:18 pm
by Suan
Thanks Tanya and Jamie, you are right easier sometimes with strangers also people who actually understand how hard it is, in the last 5 mins my husband has asked me if I wanted a mince pie, we have been married for 39 years known him for 41, I hate mince pies have never eaten a mince pie but he has asked me 5 times, I told him he had to take the foil tray off to put in the microwave he then said I will do 2 one for you one for me, I said I don't want 1 he has gone off in a huff moaning - he can be so nasty - a trait he has always had, clever with words made worse by his condition then come in to ask how to pour cream it me who then feels guilty but could also smack him one!!!! How awful is that, he is now rinsing the dishes under cold water, no matter how many times I tell him to leave the dishes (dishwasher broken not that he would use it but at least I could just put the draining dishes in) so yet another job to re do, during the last 10 months I have decorated the lounge porch and the hall stairs and landing I have never decorated before but it has been so hard, 1 step forward 6 back all the time, everything is so difficult and just drags you down, today I had hall and staircarpet fitted, the fitter came down and said are you expecting us to do a bedroom he had started to take up the carpet in there so now that looks lovely!!! Everything is such a struggle when I think he understands but doesn't and boy does guilt love to kick you in the teeth, gosh I am just waffling so much - sorry!!!!! x

Re: First Post

Posted: Tue Jan 22, 2013 9:39 pm
by crocus
Welcome to the forum suan xx
Dont worry about wittering on - its what this site is for Image
I care for my husband who has an acquired brain injury. Like you, most people who meet him think he is quite normal - just a little odd, but as you say they dont live with it.
He does not have dementia, but he doesnt remember occasions, conversations or people. He has trouble with sequencing and is unable to actually do tasks (even if he can tell you how to do them). I get so tired of saying the same things over and over. I have even typed out some explanations/instructions, laminated them and stuck them to the kitchen doors Image Image

Have a look around and feel free to post wherever you like. Most of us can be found on roll call in the members corner - pop in and have a natter. Image

Re: First Post

Posted: Tue Jan 22, 2013 10:09 pm
by Suan
Thanks Crocus, we are beyond the written instructions, the "white" board used to work quite well but it is now used but ignored, he will even write things down himself but just does not comprehend the meaning, the contents of our kitchen cupboards have been the same for 24 years he has no idea where to put what or where to find anything, I to get so angry frustrated upset then guilty that i have to go over and over the same thing, Sunday he was convinced was Christmas Eve and we had people staying in the house, it is exhausting it is like having a child again but without the reasoning I keep telling myself there are people worse off, but sometimes it is not easy to believe that keep smiling me dear x