grannie g has helped me get up nerve to post to night hubby has had so many tests in this last few years its unreal
and here we go again tommorrw
at the end of the day i know as i have been told FTD there is no medication
love bel x
No bel, you are not a traitor. You are trying to do the best for him, but at the same time you don`t want to hurt him by talking about his irrational behaviour in front of him.
Whenever my husband has an appointment, I always send a letter in advance, telling the doctor how he`s been. I just feel it will help the doctor know how things are.
At the beginning of this illness, I spoke to the doctor in front of my husband and he had forgotten the incidents I was referring to and thought I was making them up. This could have caused a full scale row in front of the doctor.
You're not a traitor. The only way you're going to get help for your hubby (and for yourself) is if you tell people what is happening. You're not 'telling tales', you're describing symptoms, and the consultant will see it like this.
Tell him exactly how you feel, and don't try to hide the bad bits. That way, he'll get a true picture, and may be able to suggest something to help.
I know EXACTLY how you are feeling - it feels somehow deceitful to do that, talk about someone when they are not around. But think of it this way... If you were the mother of a 6 year old going to the doctor, you'd be the one to do all the talking about the symptoms, and your concerns etc, rather than leaving it to the child. I understand, of course, that your case is different to mine, but I know the docs would not get a full understanding if they only talked to Ron ( also FTD) as he can't really assess what is wrong with him, and of course can't remember the little incidents which happened which caused me concern.
For me there are so many things that are awful about this disease, the uncertainty, and the series of never-ending losses make it so difficult. I was at a care giver conference yesterday and learned about "anticipatory grief", and also how, with dementia, the loved one starts grieving from the time of onset right to death, it is a very dragged out process.
Annasharlie - that was really well put regarding taking the 6 year old to the Doctor. All Jean can do is smile and nod and say yes to everything. Our doctor talks to Jean but looks at me for the answers, in that way she does not feel left out.
thanks so much all for your kiind words and support
i have to do it
i talked to hubby tonight he will come with me as always we will buy him a paper and a cup of tea -hes happy and he will hoprfully sit in cafe next to consulting room for half an hour without wandreing
i know i have to tell the story but it feels like i am a mum telling how my child is acting which is what it is in reality but what is hurting and will break my heart tommorrow he is not a child he is a man the man i love the man i have and still am trying to make feel like a man and i know what i say will not make him a man but it wil only confirme this illness he is and always has been a man to me but
love bel x
My thoughts are with you too. I know you will be strong, it is so very very difficult. Why can't life be kind to people who deserve it? You are clearly such a treasure of a wife, I know you'll always do what's best. There are many hard decisions and hard times ahead. We're all with you, and most of us going through exactly the same.
i had to go myself for tests not so nice --this week one of them was today after seeing hubbys consultant by my self
result good painful but nothing compared to telling hubbys consultant exactly how bad he is getting i started by saying i feel like a traitor talking about him without him being here he said i understad but its in his best intrest much like all of you have said i explained it hurts so much cos everyday new things are happening so my way over 2 years of this is to put the bad things ie dangerous to the back of my mind but it has got so bad the last few weeks i have been jotting them down so i can relay them easier at this point i take out my little book he is a lovelly man but i could not look at him or i would of cried and not been able to carry on i told him hubby shut his fingers in door fell over sorry i cant say it all again today i was swallowing hard to stop tears i said every one says they cant beleive he has dementia he looks so well i feel like they think i am making it up he said that is the problem with dementia we have this all the time he said he is really concerned how fast he has gone down he is sorting out an mri scan and one i dont know the name of where they inject somthing which is picked up by radiation to see better how his brain is working i only told hubby he was going to be radio active for a laugh he said i better not get close to a magnet love bel x
i could not tell our children about talk with consultant
for a couple of days
i know to a certain extent i am still in denial but on speaking to consultant and he confirming my worse fears i needed time to come to terms with it and still do although he has only had to stop working for 2 years he has been ill for a lot of years you would think i would get used to it but no
i do feel now this is so close to loosing him fld we are very close always have been he struggles big time to find words he put his hand out sunday and said I WOULD LET THEM CUT IT OFF AND I WOULD NOT MOVE if i could have my mind back and stop you hurting
you can imagen how i felt
love bel x
but i have not come to terms with how bad it is getting
in one week my world has been even more turned upside down
they are saying its happening so fast there might be somthing more sinester going on like a small bleed small tumor hence mir scan and another one where they inject dye in to see how brain is working
i have not been able to tell our kids about it yet its all too fast last week consultant was realy concerned and that has taken some getting used to now they are saying could be more could i take a year off to get used to it
love bel x
Oh Dear bel, what a terrible worry for you. All we can do is hope there IS nothing more sinister, but what a terrible time for you both. No wonder you are having problems coming to terms with it.