There is no way in h-e-double hockey sticks to be emotionally prepared for this. I know how to act and what to say, fortunately. Also fortunate is that they are usually completely unaware that you are just short of bawling. I was very tired yesterday for no reason. Well, it is a reason, called emotional exhaustion. Just a form I don't think I've ever quite felt before.
Well, I did break the rules a little and asked him who I was this morning. He said, uncertainly, "Helen?" (his sister.) I asked him to tell me what Emily looks like. He said, "I don't know, but I'd know her if I see her."
What got me through it when Steve didn't recognize me was that I'd ask him what Marilyn was like. He would reply that she's a wonderful person, the best, etc. I knew I was still in his heart, even if he couldn't recognize my face or voice.
P. S. Once I placed him, he has recognized me every day since last August. This is such a wacky disease!
I know exactly what you are going through. I am sure dh knows me and the relationship a lot of the time but others he just draws a complete blank. You just have to bear up under it. The other evening he put his arms around me and kissed me and I asked him if he knew who he was kissing. He said, "YOU". Didn't tell me a thing. Like Marilyn said, recognition comes back, probably only to leave again at a later time. No way you can prepare for this. Once it hits, our emotions sort of take over and we feel such a let-down. Then they smile at us and we forget and we start all over again.
Don has not kown me for a very long time. When he sees me there is a ficker of recognition. I think he knows I'm somebody he knows. Just doesn't know who. As long as I know him it's okay with me. Just one of many sad moments in the life of the Alzheimer Spouse.
This is the worst .....I am so sorry for you Emily from the bottom of my heart and everyother Caregiver who has experience it. I know my day is coming, I know it's the sucker punch of a life time, know one can know the feeling unless you live it. I am so sorry.....
emily, a lot of what you post is usually happening in my world at the same time…........& this is no exception. Last night as I was clearing the dinner dishes off the table Tom looked at me & said, “So where do you live?” I looked at him & I said, “I live here.” He looked around & said, “Oh, this is nice.” ( I think he thought that I lived in the kitchen). Then he asked me if I had any brothers or sisters. I told him that I had 2 brothers & 1 sister. He asked where they lived & I told him in Wisconsin & he said that that was far away. Then he stopped talking. So he didn’t actually say that he didn’t know me, but he didn’t know where I live. How much longer until he doesn’t know who I am?
Emily I'm so sorry he didn't remember. When my DW was forgetting names I was praying that she would forget mine berfore she couldn't remember who the kids were. I was so happy she publicly asked me who I was before the kids. Sometimes you just have to take the small victories. Hang in there.
Gord went down to our friends' apartment to have me removed. He told them that an old girlfriend wouldn't leave. Another time as we were getting into bed, he said he was worried about how soon he wife would be home. All these things are like a knife in the heart no matter how hard you steel yourself from the pain.
Emily, so sad.. A couple of times Dh didn't know who I was, thought I was my best friend also one time our next door neighbour, their names start with J too. One time he said I was a distant relative...yet sometimes he's almost like his old self...
I have not had this problem yet but I think about it all the time. When they do not recognize you doesn't it make it harder to take care of them? Do they get scared of you touching them or helping them in anyway/ I imagine that if my DH couldn't recognize me anymore that would be my clue that he needed to be put in a NH, is that the case? How do you know how you DH is going to react soon enough to do something about it before there is an emergency?
I'm pretty sure he's known who I am for the past couple of days. I guess it's going to be one of those things, like a funky electrical circuit which goes off and on for a while before it goes away forever.
As for how they'll react to you if they don't know you...I guess it depends. Jeff went along with my help anyway. I guess I seemed familiar enough that he considered me a trustworthy person even though the wires in his head that were supposed to connect "Emily" with me in person weren't connecting.
(maybe the answer to your last question, deb, is the part about how it's probably going to break only intermittently before it breaks altogether. So you'll get some short emergencies that will help you decide. We are back to semi-normalish for now.)
deb42657 and others--as I posted above, what consoled me was that even when he didn't recognize me, Steve remembered me in his heart. I tried to think of it as if he was blind; he couldn't "see" me, but his words clearly indicated he still loved and remembered the concept of who I was. I never had the experience of him refusing care because he didn't recognize me; if I had, I would have said "Marilyn asked me to help you do XXXX" or something like that. Don't confuse agnosia (the inability to recognize someone) with amnesia (forgetting who you are completely).
I think in Steve's case, not recognizing me while he was living at home was related to sundowning--it always happened after dark. I usually visit the ALF during the daytime, and he recognizes me; hugs and kisses me, etc. Of course, he also thinks one of the aides is me at times and while I was demonstrating to her how to clean his teeth, he kissed HER hand!!!! Any of you who can remember some of his previous antics will understand when I say--it's fine with me if he's in the frame of mind to kiss people!
Oops, nevermind. Today, although he knew I was "Emily Gillespie," he behaved as if we did not know each other well. I asked him about his wife, and he said she died. Pretty sad. It's hard to know how to balance "living the patient's reality," you know..."speaking alzheimer's," with allowing persistent unhappy thoughts. I did reassure him that Gabe (our son,) is fine and still alive, and that I talked to him today. I did try to reassure him that his wife is fine and will never leave him, but it's tricky to know whether to flat out insist on my identity when he's not recognizing it.
That's the hardest part, Emily, whether to insist on your identity or not. Our last conversation regarding "that other woman who takes care of me, cleans our house, drives our car and cooks for us", left me almost speechless. I did tell him that was me and he insisted "no, that other woman", so I dropped it. A few minutes later, I asked him if he knew my name and he said "Vickie", then I asked who he was married to and he said "Vickie". End of conversation.
I know this is very frustrating for everyone from very personal experience.
I was warned by someone early to find moments along the way because it would all be over too soon and I thought this person was a little beyond (he took care of her right to the end at home and told me this when she was unable to move and he did absolutely everything himself).
Just five years ago my wife was driving, hadn't been diagnosed (we thought she might have a mild depression after retiring at 55), and was easily 90% herself. Two days ago she really didn't recognize me and after a few minutes of rocking back and forth in the wheelchair while I held her hand, she suddenly turned and wheeled down the hall and entered someone else's room. As I watched her getting smaller as she peddled down the hall, I realized it was the perfect visual metaphor.
I wouldn't presume to give anyone advice knowing so many of our experiences are different. There is no aspect of this disease I haven't heard both extremes about (EOAD is faster/slower). Well EOAD in our case is faster and that was confirmed by the two RN's at the residence.
There is no good thing to say. It's hard when they're with us and it's hard when they're not and then when they're gone. Good luck to us all.
I remember the first time Kathryn didn't know me. It was for about two seconds in the middle of talking. She just suddenly says "Who are you" then continued with what she was saying. That was about a year or so ago. It was upsetting the first few times.
Now she knows my name amazingly but thinks I am just a nice guy that takes care of her.
The good news is last night she asked me if I would like to get married. I told her I would be happy to get married again that we have only been married twice where would she like to go to get married this time. She just smiled big and went about her walk in the living room.
My point is that even if he may not be able to remember your name on occasion or at all someday doesn't mean he no longer loves you. It only means he can't remember your name at the moment.
Oh I remember the evening DH cornered me on the couch. He was all over me like we were 17 and then he said, 'will you marry me?' Interesting, he managed to ask me originally to marry him w/out ever saying those words. This was the first time I'd ever heard them. I said 'yes' both times. He kept me on the couch until I could hardly breathe, he was so excited about the wedding, planning it, and 'we'll invite the kids,' he said and I thought that was a good idea. I'm sure he was regressing at the moment to a young man, yet, he remembered the kids! I think he knew it was ME, but not the altogether grandmother ME that was on the couch. I'm sorry for everyone, but I do think that AD families are a little better prepared today because it's so talked about now. We were prepared to have them forget us--if you can ever prepare for that.
I posted on your other thread about medicines, but somehow missed this one. I am sorry Emily. Even when they do recall us again, we never quite forget the pain of that first time.
I am another one whose husband remembered them again after placement. At home he rarely said my name, and often confused who I was. Once placed, the trauma was so much for him that not only did he remember my name, he remembered I was his wife too! I went from someone he appeared to hate at home, to once again being the wife he adored. There is a name for this phenomena, but I can't recall it at the moment.
He also started calling me Nicole, he had never called me by my given name, it was ALWAYS Nikki. So odd how their brains work... or don't. Even today in late stage he will ask for me by name. When he feels threatened he will call to me by name to ask for help. Yet, if I ask what my name is, he has no idea. Most days he asks me to marry him. Sad, yet sweet in its own right.
The first time my husband didn't recognize me felt like someone hit me in the stomach. We had some family over and he was standing in the room looking a bit unsettled and concerned. I asked him what was wrong and he said he couldn't find Diane. I wasn't prepared for it and I responded, I'm Diane. Apparently that was enough to shake him to reality and he felt better. He hasn't recognized me for over 2 years now. To get his attention, I typically have to put both hands on his face, have him look at me and talk to him. I don't know how much longer that will work but it is a blessing that I can do it now.