DH Forgets who I am - follows my lead

Mona3

It’s difficult to accept the disease is causing DH to not know who I am.  To ask if I want to sleep in the guest room or to say we can sleep together since we are both adults and ‘will behave'.  Or to think I’m his girlfriend – hasn’t a clue what my name is but knows he loves me.   At one point I took out our marriage license – we’ll be married 35 years next week.  It is hard to not have it hurt so!  I never know if he’s reaching for me or ‘someone he thinks he just picked up’!  Picked up?!?!?!  He’s 77 – OMG who are we kidding at this age!!!!  I am younger, but not by THAT much!  He must think he is a kid again!!!!  You have to find humor in some of this stuff we go through.

He might be following my lead - seeing I know where everything is in the house (and he doesn't), my things are everywhere - so he realizes we are 'together'.  I must say he manages it well – he is in a good mood – I should be thrilled!  I think if it were me, I would be very scared.  Anyone else feel their partner is ‘going with the flow’.  Like we do with this illness that is driving us CRAZY!!!!  I wish us all a peaceful day.

Sligo177

I'm sorry you're going through this Mona 3, it really feels strange when your spouse doesn't know who you are....my DH knows who I am but he does forget my family, his family, etc...and agree 100% about finding something to make you smile, keeping your humor, I try every day.  A big hug to you.

Crushed

dear Mona I've posted this before but I thought you needed a laugh

 DW came down to breakfast 

DW  Did I have sex last night ?

Me Yes  

Was it with YOU

Me Yes

DW  Good I was worried 

Rick4407

It's been just short of 3 years since that "progression" of the disease.  It quickly evolved to her being fearful and militant about who I was and what I was doing in her house.  We quickly started seroquel and she just settled down to where we are now.  Sometimes I am Daddy, mostly I am just the man who lives here.  

We have snapshots of our wedding and her children and of her in HS and elementary school on one wall.  She frequently want to know who they are.  She sometimes recognizes pictures of herself, seldom anyone else.   She operates at about the level of a 3 year old with anything that came after that in her life is gone.   She remains somewhat cheerful, pleasant, and compliant in late stage 6.  Rick

markus8174

My DW occasionally forgot we were married. I was platonic friend for years before we made the jump to marriage. There were several times in her last year here at home when she'd ask "When did you get here? I didn't remember you were coming over!"  I took what I could get and was happy she was at least glad to see me. Before I had to place her in long term care it was when she knew most clearly who I was that she became the most difficult; refusing hygiene, in denial about incontinence, delusions about where we were and where we were supposed to be going... In the nursing home she knows me over 1/2 the time, but the pattern is the same. When she is clearest about who I am she is angry I'm not cooperating with her to pack our clothes and head home (I think we're on a road trip vacation).  I'd stop visiting so often, but I'm afraid she will have no memory of me at all if she was out of touch for a week or two. Did I mention, I HATE ALZHEIMER'S!

Gig Harbor

My husband forgot I was his wife and was shocked when I said we had been married 50 years. I moved to the guest room two years ago because he had violent dreams and would fling his arms out and kick me. He would also turn the light on when he got up to go to the bathroom. I never ask him anymore who he actually thinks I am because he doesn’t have any curiosity about anything - family photos or any of my relatives. He knows our daughter as someone familiar but I think he no longer has a concept of a daughter. He never worries about anything so I try to just let things flow along. I keep our conversations short and use as few words as possible. He is happy when he doesn’t have to think much. I look at myself as a caregiver living a parallel life.

toolbeltexpert

My dw has just started the "are we married"  she had found our wedding album and of course those memories are not clear. This went on till she lost the wedding album, I can't  find it either. But that stopped the questions for now. Sometimes pictures are good and sometimes they can be triggers. And we've been married 44 yrs in June

Lynne D

Hi Mona,

Yes, this is a singular loss. My husband does not remember my name, and in fact introduces himself to me in a joking way about eleven times per day. For someone with dementia, I think that is a pretty effective ploy to orient himself to who I am. Like you said, it must be very scary for them. I try to make it easier by adding information: Lynne, wife of 26 years, glad to meet you!

Like Gig Harbor, I sleep elsewhere because of the thrashing. 

When agitated, my HWD claims this is his house and demands I leave. I just disappear for a while whilst he shouts at me and hallucinations. 

Who knows what fresh hell this disease will bring us.

David J

All of the above!  My wife is now in MC, but in the few years beforehand, we had some interesting conversations or interpretations of who I was and why I was there:

“I have to go home, my father is going to kill me!”

“Joe? (Her deceased brother)”

“Dad?  (Her deceased father)”

“Are you married? Do you have a girlfriend?”

“Where do you live?  Thanks for coming so far to visit me.”

“We should get married. Do you want to get married?”

“This my house! MY house!”

Then all that stopped and she just accepted that I was there for her. If I answered truthfully, I’d get a loud and adamant “No thats not so!” Or an incredulous “really?”

Now, she usually responds to me when I visit, but many times will walk past me. There is some recognition, and acceptance that I am someone who is familiar. When the staff refer to me by name or as her husband, there is no reaction. 

Interestingly, her cousin visited last week, and as we approached her, I said “Look, Mary Lou came to visit you!”  A few more prompts and repeating “Mary Lou”, and there was a spark of recognition, my wife said “Mary Leh” and hugged her, and the moment was gone. She hasn’t said my name on about a year. 

Paris20

This week, for the first time, my husband asked me where his wife went. I looked at him directly, close up, and he realized he was looking at his wife. He laughed. I didn’t. The next night he asked me when I had arrived and how I was going to get home. I simply said that this is my home, and his, and we’re both not going anywhere else. That seemed to satisfy him but I know how this awful disease works. Once a symptom appears, I will start seeing it again, with increasing frequency.

NylaBlue

My husband has a whole repertoire of errors about my role in his life:

“Are we married?”. When I tell him we’ve been married 40+ years he’ll say “Yes, that’s right”, as though he was just testing me, but once he replied “Are you sh***ing me?”

“When did you get here? Will your husband will be here to pick you up soon?”

He also asks me at different times if I’m his daughter, my mother or his sister.

When he does recognize me he sometimes thinks we’re much younger “Will your dad be upset that you’re still here?” “Does your mother know where you are?”

I’m just relieved that so far I’m someone he is glad to see and he hasn’t tried to throw me out.

Jeff86

Variations on a sad theme.  

DW doesn’t know my name; hasn’t for over a year.   When asked, she’ll say “you’re him” or “you’re the one.”   And she doesn’t know that we’re married.  Not sure how she thinks we’re connected—I think she sees me as a good force in her life, but vague beyond that.   Still, all in, I am lucky.  She doesn’t seem to think I don’t belong in our house. And with fair frequency she tells me she loves me—whoever I am.

Inden Mom

You are not alone Mona3.

Not too long ago, for the first time, DH woke up early morning and found my son in the kitchen n told son that there is a lady sleeping in his bed (it was me).

It was sad and I'm starting to worry more.

Mona3

Thank you so much for the laugh!!!!  I needed it.  I never know if DH is talking to me as his wife or 'one night stand' lately.  I wonder what he thinks in the morning LOL

Mona3

My DH is also on Seroquel - I don't know how I would have handled the outbursts otherwise.  He too seems happy and content other than not being able to do the simplest things or remember family and friends.  It is very sad to see someone so intelligent and previously capable change so quickly.  Stay strong!