In the process of deleting the last comment by HLK* in order to put under another topic, I accidentally deleted the comment you started with. It's gone! Would you possibly remember the gist of what you wrote and rewrite it here??? It will come up at the end of the discussion, but I can redo this discussion by putting it back at the top where it belongs.
I don't have a life. I don't like feeling that I want my DH to die before I am too old to have another life with someone else. I have not had intimacy for a long time now and I miss it. I feel like a terrible person for wanting this but I do. I want a "normal" life with someone who I can have a heallthy relationship with. This is a condensed version of what I originally wrote but it is the gist of what I meant.
deb - I have to say when my husband scored the same as a year ago (22) I had mixed feelings. When he stays stable all I can see is him going 25 years like his dad. By then I will be dead or too old for much of a life. Will definitely be poor. For him, he was glad he was the same. And we can still plan on more traveling - if money allows.
So do not feel bad or beat yourself up over your feelings. They are what they are. It is keeping it from affecting our attitude towards them that is hard - at least for me.
deb - I have the same feelings alot of the time. I hate feeling this way, but don't want DH or ME to spend the next X amount of years in this whirlpool. Today was a good day and I'm glad we are still hanging in.....Yesterday was a bitch and hated hanging in. It goes day by day, hour by hour, heck...minute by minute. Don't feel bad because of your feelings....we all have them and hate feeling that way, but that is our life now. I know that when we go the the dr I hope for worse scores. Guilt .....
Numbers aren’t a part of my journey. DH won’t go back to the neurologist (our PCP prescribes the necessary meds). So all I have to go by is his declining actions. Problem is, as I’m sure most of you experience, is that one day he seems “normal” & the next he can’t do the simplest tasks. I agree with all of you who don’t want this to last so many years that we have nothing left financially or emotionally. I am so tired…….. no the word I am looking for is WEARY. There are days when it takes all my strength just to get out of bed (I know I’m preaching to the choir!).
I know what you mean by these Jekyll and Hyde personalities. This morning dh had appointment with pcp. Dr. didn't ask anything difficult but if the both of us didn't know different, I would say that dh was perfectly normal. Walking out I said something about Obama and he asked, "who's Obama?"
I am very glad to know that others share my feelings because I always thought it was normal to want to have a healthy relationship and just because we love our mates and would never think of cheating on them while they are alive doesn't change the fact that we are missing out on what is normal to have. The thing that will depress me the quickest is thinking about this disease going on for so long that I will not be able to start over when all is said and done. I feel like I am already in mourning so I don't have any idea what the mourning process would be like after he dies but I have been living with and taking care of a child instead of a husband for so long that sometimes I already feel like I am single I just can't in all good conscience do anything about it now(if you know what I mean)
I've been very lucky in that I met a woman that had gone to the same high school altho a year ahead of me,she saw my profile on Classmates an left a note,knowing the circumstances of my LOs illness.How nice it is to again enjoy the conversation of an adult person of the opposite sex,we go to lunch or dinner occasionaly an both know we're helping each other cope.Being a retired social worker she's well aware of the trials an tribulations we are all going thru,I never thought just someone to talk to without wondering what was gonna hit the fan next could be so enjoyable.If it were any more than what it is I'm sure the guilt would be immense but for now this will suffice.
I've been very lucky in that I met a woman that had gone to the same high school altho a year ahead of me,she saw my profile on Classmates an left a note,knowing the circumstances of my LOs illness.How nice it is to again enjoy the conversation of an adult person of the opposite sex,we go to lunch or dinner occasionaly an both know we're helping each other cope.Being a retired social worker she's well aware of the trials an tribulations we are all going thru,I never thought just someone to talk to without wondering what was gonna hit the fan next could be so enjoyable.If it were any more than what it is I'm sure the guilt would be immense but for now this will suffice.