Joan, as usual, you manage to give words to things that I can't quite articulate, even to myself. Just last week I realized (painfully) that what is left of our marriage is almost all in my own mind. All the memories and commitment are mine. DH is in his own world most of the time. Fortunately, most of the time he's kind and agreeable, but he's just not really here any more. Any time I would like to reminisce about something in our past, it's just too late for that. I was crushed when I realized that DH no longer remembered so many things that are still important to me. Special weekends, working through hard times, even our wedding night are no longer part of his memories. This is a cruel, cruel disease.
All week this very thing has been on my mind. There is no more marriage except in the legal sense. I took out some pictures and showed them to dh. Except for me or himself, he didn't know anyone. Our daughter comes to stay with us one or more nights a week and he treats her as if she were just a close acquaintance. She brought up some event during her teenage years and he couldn't offer any memory of them. She is one who has denied what was happening. I felt sorry for her but she is beginning to see the light. DH and I can't talk about anything we did, will do, want to do or have done.
Joan, again you have hit on a topic that I have been thinking about. Not only can’t we share memories, but I find myself forgetting what my Sweetie was like in our past life. At times I’ll look at him & think, “Is this REALLY the intelligent, assertive, self confident guy I fell in love with?” I’m having such a hard time remembering him that way.
Elaine--I agree--I have the same thing going on. It helps me to look at old pictures of him , but it feels like the pictures are of a different man than the one I'm seeing now. I struggle to remember him as he was.
When I wrote the blog, I wasn't sure I was conveying just how devastating this loss is, but all of you spouses DO understand. I am glad I was able to express what you are feeling. If my husband's physical disabilities make it difficult, if not impossible, for us to travel or share adventures, I thought - well, we can reminisce about our life together. I never realized, until the ability to share memories was lost, just how painful that is. Like our history together has been wiped out.
Yes, yes, a thousand times yes.... and it doesn't have to be big important things, it's also small things... He 'knows' who I am, and my daughter, and my son, and he knows who his sons are (altho he hasn't seen them). he doesn't know that his son lives in costa Rica. or that we went to cR last year to see him (for what I knew would be the last time). so much of our life together is lost to him. and it breaks my heart every day. He's in a NH now, and doesn't know that he's not home.... Keep a stiff upper lip, Joan, It will get worse.
It’s strange what they know & don’t know. My DH knows who I am & that I am his wife. He knows our kids, but he is losing the relationship aspect. When our sons call us & when he is finished talking to them he asks them if they want to talk to “Elaine” not Mom. We were with 3 of our 4 children & 6 of our 8 grandchildren Easter weekend & when we were driving home he told me that he was going to miss the “friends” that we were just with. Our children realize he is losing that & I know it affects them. So SAD!
My DH also calls me by my first name when talking to the kids...who I am sure he really doesn't realize are his kids. He doesn't recognize me in pictures and the other evening even asked me "where is Dianne?".. I said "I am here". But he still kept looking around for me. I mention his SIL, who he is very close to, and he gives me that look like he should know her but will play along pretending to know who I am talking about. NOthing from the past rings a bell. He doesn't remember what happened 2 minutes ago let alone 42 years ago.......a waste of memories!
Not a waste of memories, you still have them, phil4-13, My DH also doesn't know who the kids are, he thought my daughter was my sister, then settled on her just being a friend. that's OK, he does recognize her as someone familiar, as he does my son. and that fact is so important to them, and to the grandies. He's happy to see them. and he knows he's somehow important to them. BTW, I say my son and daughter, however, he has been their dad for 40 years, and they are now 43 and 46, so it's very important to them that he recognize them at least as someone important.
L. is almost completely speechless but when he does say something it makes sense. Yesterday when I left him at the NH I said bye, I love you, see you tomorrow. And he said Love you too, sweetheart, and sounded exactly like he always has. First time I've heard that in months!
One of my biggest pains of loss came from something so little. My DH had always slept with a body pillow. Had for years before we married. One night late last year. We got into bed and I handed him his body pillow and he put it behind his head. He had never in 30 years done that. It was like a knife through the heart. If he could forget his pillow that he had been sleeping with for longer than me, what if he woke up one morning not knowing me. It still shakes me to think about it. How fast it can go. DH has been for some time calling me by name to our kids. Even before his dx. And often forgets he has grandkids.
I remember Jeff as he was, sort of. Or at least I remember what it felt like to have the close relationship with a marital best friend. But, yeah...it's faded into a vague sort of pastiche of feelings...nothing I can conjure up with any sense of immediacy or reality.
I was thinking about this thread as I tried to go to sleep and I think what bothers me the most, at the moment, is memories...I almost hate them...in my mind's eye I go back to when we had fun going camping, going to the UK for our 25th anniversary, etc...they yesterday he could not remember the middle girl's birthday which is tomorrow....he always knew those dates... Then what came to me thinking about friends my age ( remember my dh is 17+ years older) is that their kids are graduating college, some high school, some even getting married or becoming a grandparent for the first time...they have trips to plan and take, or dinner parties or social evenings to look forward to in the coming year...there is something for them to plan together to do or place to go or item to purchase for the house etc.....and they can enjoy their "remember whens".. Our " remember whens" are painful because we remember them all alone and as to something to look forward to, unless we involve ourselves in pipe dreams for "after" if we live through this, we have nothing to look forward to but more illness and declines in our LO..and it is pretty damn depressing...