Jen, my heart breaks for you with all you have been through. You may feel alone but you have us here for you. Yes, you are fragile now, but you are really a very strong person. The rope is still dangling for you with lots of big knots! Love you, Girl.
Bev, I'm tired and can't think straight or write much, but wanted to post that I so relate to every single thing you've written in this thread. The yo yo, the feeling I can do it and then today I was in the car crying and just kept saying out loud to no one I CAN'T DO THIS. But then what does one do when one can't do it. Just go back and do it or in my case I went back and crawled under the covers until the next thing I had to do came up and then I did it. and on and on. I too mostly still get hurt when he attacks me and it seems to come at those times when I've put a lot of effort into something and am already tired and although don't expect praise anymore, the attack still shocks me and in that moment I at least temporarily "emotionally divorce."
Bev and anyone else for that matter, my email address is on my profile. I'd love to communicate directly. I had such a wide circle of friends and community before we moved across country but now feel that absence. On the other hand, I have turned myself into a recluse because I just don't have the energy to make any more new friends. And still haven't found a support group out here which actually has people attending and even then I'd have to drive an hour to get there. So, email friends on this journey are welcome. The couple good friends I've made here have been wonderful but of course they can't totally understand. And my family isn't there or me in that way at all.
I'd like to respond more specifically to some of what has been said but two nights with almost no sleep has taken its toll.
Yes, Emily, therapeutic fibbing is my motto. I tell my husband that he's getting better, his memory is improved, fewer repetitive questions, etc. My goal is to make the rest of his time here on earth as happy and carefree as possible. He did nothing to bring on this horrible disease; he has had to cope with so many losses at too young an age; he does not deserve this! Yes, it was hard to deal with everything in the beginning, but I've grown stronger over time and have seen that I can do it. The last thing I would want to do is to make him feel that because of his illness, he has failed me, failed to be a good husband, that I am suffering. Isn't that what love is all about--putting someone else's welfare before your own? It is in my book.
one bad day just rolls into the next here and nothing gets solved. Yes, I do feel scolded. It used to happen all the time and then, I think the nutcases moved on to some other site...or management sent them walking. So, I figured it wasn't ME. Charlotte, I took your advice about talking to my councellor yesterday about "acting" when I go to see John, which is more and more infrequent. My doc has had to deal personally with AD in her own family. She understands what I'm saying. She is intimately acquainted with the details of my marriage over the years, too, the family dynamics. Like me, she wonders....who is this person who has "written a book", yet doesn't understand why we regress at times and ask advice, still feel a need to talk out fears, shed a few tears on the shoulder of our "LO" with the disease? Like her, I don't think I need that book. If I'm doing something dangerous, like using razor blades to cut my steak (and I tell you about it) or walking in traffic....please feel free to step right in. Otherwise, just like everyone else, I'm just saying how its going. I'll ask for advice like I have in other areas here. Thanks . Love you all, too, and have the utmost respect for everyone. Jen
Marilyn, i also agree with the idea of trying to keep the spouse in a relatively happy atmosphere during this disease. its not always easy to put on a happy face and put our own problems on the backburner but like you- i think its the kindest thing we can do for our spouses. they didnt ask for the disease nor did we, but if we can try to make their time here the best we can i think its the best recourse. it does no good at all in my case to allow my spouse to stress over issues he can't rectify at this point. divvi
True. I never, never discuss money concerns with Jeff. The therapeutic face on that issue is "everything is fine!" And usually it probably is fine, but even discussing decisions or concerns will kick him into worry, and "I should get a job" mode.
I totally agree with Marilyn, Divvi, Emily and those who have stated that though our spouses can not BE our spouses any more, and that they didn't do anything to cause this horrible disease, my wedding vows meant everything to me and I will honor him and them, and that includes for better or worse, in sickness and in health, forsaking all others until death us do part.
I have been a mediator for over 45 years.....I have four children, and mediator and referee began early on, and the children learned to get along, love each other and have fun together. We had a rule no one went to bed angry. It worked. Dave and I will have been married 49 years in August.
He doesn't know who I am, except that I am his lifeline to this world and when I am home, he has to be in the room with me. From the day of his diagnosis, I didn't discuss any problems I might have, because I knew he couldn't do anything about them. I have, however, cried on his shoulder while hugging him, several times while standing at the door, prior to getting the keyed dead bolt locks, trying to keep him from "going for a walk" - Those tears seem to get through. He stopped for a while. Long enough for me to get the locks installed.
I have been at the end of my rope several times. We all have. I built an emotional wall like Bama two years ago. It is the only way I've gotten through this so far. I'm throwing on more bricks daily. I love my infant, and when he goes, I'll miss him.
Mary-so beautifully worded. I did separate myself from my dear husband as he had been in his own hellish world for so long. Now that he is gone I miss him so much. The tears that wouldn't come before now flow freely. Not for me-but for all Bill missed out on.
I'll miss my DH too. I'm nowhere near ready to let go. The past few days since I had to get him to agree to stop driving have been so difficult and I've reacted by withdrawing into myself. A friend came today and talked me out of bed and we went to lunch and some errands and a drive. That helped. But at the end of today I was able to pull my own feelings out of this for a moment and felt deep compassion for his situation and the loss he's feeling and suddenly all I could think about is him and how little time we have left. I resolved then to concentrate much more now on having as much enjoyment together as we can NOW. I hope I can stay in that "compassion" place for it is where I do best and feel best.
Terry, I understand so well what you say about staying in the "compassion place." I tend to get into a mode where I'm doing my best all the time to keep my own things going, and the household running smoothly, and forget about being kind. My constant need for inspiration to be compassionate is one of the reasons I keep reading on these boards.
Terry, I didn't see your e-mail in your profile. I'd be glad to correspond with you, if you'd like. I haven't posted for a couple of days, been very busy. Right now is a good day for my husband and I. When he's in a good mood, I'm in a good mood. The hard part is when he isn't, but I'm learning, little by little, to try to distance myself from his mood. It 's a little easier when the weather is nice, though. He's in a good mood more often when he can go out and sit with the birds and squirrels, and rabbits, and on and on..... Everyone tells us how to behave when our spouses are not behaving, but it isn't always easy, is it? But, you mustn't let his illness draw you into a depression, for that's what will happen if you keep going to bed. I know, I've lived it, and it will NOT happen to me again! If you can, go somewhere, shopping, out with a friend, see a movie. If you're like me and unable to go unless you have a sitter, that's another story. But, if you can, just do something you like to do. We have a long way to go; actually, we don't know how long this will last. It could be 10 years or more (or less), and we simply have to learn to live with it, there's no other way.
I'm here too, if anyone wants to talk. E-mail posted on the members area. Most of you know John isn't with me here at home anymore. My emotions go all over the place, depending on what's happening with him (and his family). Yep, I'd say, like Bev has stated, to stay busy. I went through a LOOOONG period of time when all I'd want to do was stay in bed. Stay in bed and take Ambien, other stuff, watch television, let the place go to waste all around me. My lovely neighbors recognized this (even broke into my house once, they were so worried....couldn't raise me with phone calls, beating on the doors) and came to my rescue. Now, not a day goes by that I don't get my morning phone call and a neighbor comes over for coffee or a talk about the "list for today". What a beautiful thing. Irritating? Sometimes, because of my personality.....and sometimes I just don't want to deal with reality for a day or two and just want to be left alone to cry, moan and groan, complain or pray.....sleep and watch tv. But, I can say, I''m getting better. I have plans for my future (even if its just tomorrow's work schedule) and am trusting providence more and more. I've been reconditioning my facility here (horse training, maintanence, hay fields and pasture) and that has given me LOTS of busy work to do ..... keeps me from going to bed at 4pm like I used to!! I have lately still found myself in resentment for things John has done during his sickness.....dumb purchases or cheap equipment and machinery for instance, that I've had to replace at GREAT EXPENSE this week. Even down to the cheap plumbing fixtures in my barn. Its all jusst an exercise in "letting it go, Jen". I think that if I live long enough, I will be known as unflapable and very patient. Except, maybe, with men!
I'll start one of those "after" buckets and put a visit to your place in it. I want be hard to entertain. Just pour me a warm glass of milk and give me a comfortable place to sit. Us, ole ladies, are adaptable.
Jen, I've never been to Texas so be careful about strewing invitations all over the place LOL. But it's going to be years before I get to AFTER so you have little to fear.
Seriously, it sounds like you have wonderful neighbors! You must have done something to deserve them, too. I'm very glad you're up and at 'em!
Jeanette, Jen is in beautiful Virginia...and I'm the one in Texas...(Your Jello connection...grin)... Just wanted you to know that anytime you are in the area, there's a place for you with us!! We're just north of Houston...today the temp was in the high 90's with humidity in the 80's. You might prefer visiting in the Spring. ;-) Welkom!
Sorry about the mistake Jen. I keep thinking of you as a ranch girl. And Nancy, thanks for your invitation to Texas! Believe me I have not forgotten your jello offer. Right now we have a good supply since we were just in the States. I bought loads and loads of sugar-free orange jello and threw the boxes away to save suitcase space. After checking the suitcases I almost panicked, afraid that the unlabelled powder might be mistaken for some drug. I guess the orange jello smell would be distinctive though. Anyway there was no problem and it all arrived safely.
Jeanette, I escorted five outstanding Girl Scouts to Japan and the Philippines years ago. All of the girls were fascinated by the Coca Cola bottles in Japan that had "coca cola" written in Japanese..and each one brought several home for souveniers. Coming into San Francisco Customs, the girls (in their G.S. Uniforms!!!) were rushed through customs, except for one. She was asked if she had anything in her luggage to declare...and she said, No sir, I just have some COKE in there!............. OMG... we all had to wait and wait.. until her luggage was completely emptied and carefully searched..., and no amount of explaination sufficied. So, your Jello could or could not have been suspicious, grin...just don't take a bottle of Coca Cola home!
Interesting and timely topic. I have posted previously that my DW almost hated me before we had our diagnosis and later when we were trying to cope with everything. She wanted to move to her own apt or move in with her sister (who she previously couldn't stand). And lots of other things. But, now that she is in an ALF, I am the love of her life and all she wants is to be with me.
I have found that some "old habits" die harder than others. I was used to discussing all kinds of things with my husband. One of the hardest things for me was accepting that he could no longer understand or contribute anything of value to those discussions any more. I still feel like I should talk with him when I visit even if he doesn't really interact with anyone any more. My answer has been to read to him. It has been a lot of fun reading Kipling's "Just So Stories". I love the way the words just trip off my tounge. Last night I read "Elephant's Child" to him and had a ball with the great greasy grey-green Limpopo River with fever trees all around....". The nice thing about reading to him is that it doesn't mater how much he does or does not understand, at least he is hearing the sound of my voice. I think that comforts him in some way.
What a good idea, Therrja. I'm going to try it. Typical "conversation" this afternoon. I went out to get the paper but on the way back to the house stopped to pull some weeds along the driveway. DH comes out "Are you trying to . . . ? (I think he thought I was trying to leave without him.) Me: Oh, no, I'm just pulling some weeds. DH: Weeds, that's what you are.
Now I've had insults before but I've never been called a weed. (Hard to tell what he meant by it; he was not angry or upset.)
Reading a book to him sounds like a wonderful idea! Why didn't I think of that? He likes when I read him sections from a newspaper and yesterday he wanted me to read about a historical site in our area. Letting him pick the book and reading a little each day is something I hope we can do together. Thanks for the great idea.