The dreaded has finally happened

tryingtodurvive

my sweet DH has just begun to not know who I am. Lately he’s been asking me what my name is. He used to shadow me all the time but now it’s only intermittent. He used to say my name a 100 times a day and then he started asking me what my name is. The other day I told him and he looked at me and asked if I was his sister. Yesterday he went in the yard and came back in and asked who are you and then last night we got in bed and he asked me what happened to the other woman who used to live here. He was babbling and said he was with her for 30 years. He was talking about me. Sometimes he still calls me his beautiful wife but at other times I’ve lost him. It’s so sad 😭

Joe C.

Sorry you have reach this point, it is certainly a huge loss. I can remember well when DW started not recognizing me as her husband and how it stung. My first incling was when we where out for a ride one day and she asked, “what is that building”, she was pointing to the church we were married in.

ButterflyWings

Ouch. Yes, this is par for the course and really hurts. When DH first uttered those words, asking about "The other woman" I was devastated. I am sorry for your pain. FWIW, if behavior escalates further, it is worth checking him for a silent UTI. DH went from suddenly not knowing who I was, to hallucinating multiple wives in the house and having conversations with them, exit seeking to the extreme (trying to climb out the window) and more drama all in the space of a day or two.

I mention this because it can be progression but also the suddenness may indicate there is something else going on like a UTI. Again, if off the wall behaviors escalate, you should test for a UTI with culture.

Here is a link to a long ago post, when I was commenting on another spouse caregiver's "first time". It always makes me reflect on those sad experiences which, in hindsight, no longer sting so much anymore. I got to the point before too long where I was just genuinely glad he still liked me no matter who he thought I was, or was not. You hang in there.

*Edited to insert my comment from the post linked above:

Yes, my DH also has multiple wives (all of them, me). The first time he asked me where the other woman went, it was such a gut punch...it took my breath away and made me sad for days. He said, "she was just here in the bed with me", and I realized he didn't really know who I was anymore.

I'm over it now, (well it doesn't hurt like it used to) though it still is beyond me to understand how this brain disease works. Today, we spent several hours seated next to each other on the couch. He, resting his eyes, and me working. I left for 15 minutes (next room) to prepare a quick meal. When I brought it back he wanted to know where the guy went, who had been sitting next to him. And still later, was his son going to eat too...repeating "he was just sitting there" (I didn't bother telling him, no, that was me).

As for the multiples, yes, he had that hallucination a couple weeks ago too -- I came back into the bedroom and he was so glad to see me. Said the other 4 or 5 ladies that were in there before just kept bothering him, and he really needed to sleep (!). That would be me. And believe me, I wasn't bothering him that I know of. Just sitting up in bed next to him, reading sanity-saving posts on this forum. 

Hang in there. The only thing we know for sure, is that it's going to get even more interesting! When his hallucinations first started it was worries that intruders were threatening us so he was stockpiling knives, big garden tools, a bat, etc...and I quickly got his neuropsych involved before someone got hurt. He's not so agitated or worried now, but still having really wacky experiences with people I can't see or hear. I even hear him having conversations with them sometimes.

charley0419

https://alzconnected.org/discussion/69906/the-dreaded-has-finally-happened

it seems incredibly that’s what’s happening can’t wrap my head around that. From when diagnosed yo this point was how long of time????

fmb

My DH does not know who I am, either. Some of the time he knows I'm his wife, but thinks I'm his late wife who died 25 years ago. Now I'm just the nice lady who come to visit and fusses over him. The first time it happened, he did have a silent UTI, so I would definitely have your DH checked. Unfortunately now it is the progression of ALZ with DH.

tryingtodurvive

https://alzconnected.org/discussion/comment/216083#Comment_216083

thanks so much for your insightful reply. I knew it was coming but I guess we’re really never ready.

FTDCaregiver1

So painful for you to experience this, it's like you see a fog roll in, your LO is in another boat, slowly drifting towards it and you keep pulling on the rope to their boat to keep them tethered to you, but gets harder and harder, saps your strength and that damn fog keeps getting closer. You're not alone, lots of boats are around you too fighting this damn fog, god bless you.

Crkddy

DW used to say "do you know me". She would say it several times a day. Four words that would break my heart over and over again. She doesn't say it anymore - nor does she say anything as this disease has robbed her speech. What I would give to hear her say it again.

Laurie1282

It is a gut punch the first time they don't know you. Mine was when he told me that he needed to let his wife know where he was. Now he can't really express himself much at all due to aphasia, so he doesn't talk about who I am or ask any questions. I just hope he knows that I am someone who loves him and cares for him.

Pat6177

My DH woke up from a nap and asked where is Pat? I had certainly read about this here on the forum but it was so sudden, I was stunned and speechless. 2 minutes later as we were getting ready for bed, he asked if I had found Pat yet. Then the next day or so, he asked if he would see me again and asked for my phone number. Maybe a week or so later, I was already in bed and he came out of the bathroom and asked where my husband was. He has frequently asked what our relationship is. Sometimes he knows my name but thinks I’m a caregiver. A few times he has told me about the wonderful things that Pat has done for him. I have come to accept that he doesn’t always know me. And I’m so glad that regardless of who he thinks I am at a given moment, he always seems to know I’m his person and he’s happy and grateful to be with me.

LaneyG

My heart goes out to all of you. DH has started to forget names of family members and who is who. I fear this may be coming next. Honestly for some reason it terrifies me.