Doesn't know who I am

nanasharon

When I went to bed last night Doug asked me what my name was. God I hate this disease. It's like death from a thousand cuts.

Chris20cm

DW asked me a couple of days ago what her last name is. It's been the same as mine for 61 years. I'm with you, I hate it.

howhale

Had the same experiences with my DW, now since gone. It was so hard as she no longer reliably knew my name or that I was her husband of 57 years. I will share with you what I learned and what I coached my family. When I thought that I had been lost to her I struggled so much with that pain every time it happened. But, one day, I noticed something about her. She often sat in her recliner seat and had difficulty looking upwards so her head was often tilted slightly down. I got down on my knees, right in front of her and closer to her face and took her hands in mine. I remembered that her hearing had started to weaken so I spoke calmly but loud enough being so close that I knew she could hear. Now she could see my face clearly and I told her I loved her. I then saw a reaction in her face, her eyes looked at me directly and were very focused, she smiled slightly and gripped my hands more firmly. It was then that I knew that she knew me. Maybe not my name or that I was her husband, but she knew me, my voice, my words and she was comforted and safe. My family learned to do the same and found the same reaction giving them comfort that their mother had not forgotten them, she just communicated differently and we had to learn her form of communicating. The conclusion I share is that this disease steals their brain but it does not steal their heart. If you were once in their heart, you will always be, you just have to learn how to see it. If you were ever loved by her, you are "one of hers" and you are safe, loved and trusted, just look differently to see it from her. All the best as you walk this so very difficult path with you loved one. That you stand beside them through this nightmare, care for them, protect them, die a little bit with every bit of their loss, puts you in the esteemed category of a hero.

Dusty217

Thank you, so well said. My DH and I met in our 50's and this is both our second marriages. My biggest fear is how soon he will forget me. We both have a deep love for each other and feel we were met to meet. This gives me hope his heart will remember me. And I feel this to be true now that you express it so beautifully. My mom had AD and near the end was nonverbal and seemed to know no one. She would however grin and squeeze my hands when I visited her. She knew me until the end.

howhale

Trust that his love is in there, in his heart, and if you are open to finding his means of communicating, he will let you know. When I questioned if what I thought I was seeing was really so, on a very few occasions my DW would muster all of her energy for just a moment and look at me and say "thank you for taking good care of me" and then recede back into silence. It was then that I knew her heart was always open even as her mind shut down and it gave me strength to continue.

Bailey's Mom

My HWD started to not recognize me as his wife several months ago…we have been married for 57 yrs. He will ask me at least once per day if I have ever been married, if I say we are married he makes me answer test questions to prove it and then will ask if we are still married, and if we are about the same age. He usually thinks that I am the maid, the man down the street (that one is hard to swallow), the cook, his nurse…anything but his wife. He is extremely paranoid and thinks that I and my 'friends who live in the house with me' are stealing all of his things and is continually hiding items (keys, scissors, cosmetics (mine too), wash clothes, towels, etc) that we usually never find. At first I was very upset and heartbroken over it, but have come to terms with the situation and just go with it…what else can one do? The worst part is that if he does (briefly) know who I am he is mean & nasty and lets me know about all of the horrible things I have done to him over the years and how much he dislikes me! I am at the stage where I really am just the caretaker and he is my patient.

White Crane

My DH has not known my name for several years but he knows I’m his wife.

trottingalong

https://alzconnected.org/discussion/comment/268914#Comment_268914

For now at least, my husband knows who I am. I will remember your words and advice when that time arrives. Beautifully written. Thank you for continuing to help all of us still on this journey. You are appreciated.

Chance Rider

Yesterday my husband called me “Evie” for the first time in over 26 years. My name is Eve, I’ve never used Evie. It made me wonder if it’s the beginning of not remembering my name, though he knows who I am. Time will tell if it’s a one-off or a new trait.

blacksparky

One if the hardest emotional struggles I had was when my DW forgot my name and that we were married. It tore a piece of my heart out. When I finally came to the realization that this just part of the disease, I accepted it and then I told myself that I would be the best caregiver and take care of her. She may not remember my name but I know that she sees me as the person who takes care of her.

tonyac2

My DH rarely calls me by my name. It’s mom, mother, grandmother and sometimes grandpa. Occasionally he calls me by his x-wife’s name. Oddly enough, he never messes up the dog’s name. I’m not sure if he knows we’re married.

Biggles

https://alzconnected.org/discussion/comment/268914#Comment_268914

howhale that is so beautiful simple and profound. I love my DH of 54 years so deeply the first time he lost me I was devastated and cried deeply but now we hold hands and I talk softly in future I shall look even deeper into his eyes. Thank you for this.

Sunfish47

My DH stopped remembering I’m his wife about two years ago. Last evening he asked me: are you my sister?
The first few times he didn’t know I am his wife really hurt me (we’ve been married 49 years). But I try hard to accept the little quirks and progression of this disease cuz I know he’s a victim and can’t help it. He shadows me all the time, so he knows I’m his “person” but doesn’t always know my name. When I ask him to bring in the mail from the mailbox , he goes thru sorting the envelopes and can’t pronounce my name and doesn’t know who that person is. He can at least still read his own name on an envelope. Doesn’t remember the names of our 2 daughters or our 4 grandchildren, or even that they exist. He’s stage 5.
His brother who lost a leg in an accident twenty years ago and has perpetually whined about it ad nauseum now says: my brother has it much worse than anything that happened to me.
Yep, it’s a horrible ongoing disease.

Bowerbird

Like Sunfish, my DH, who is in MC, knows I'm his "person." I visit every other day and occasionally he asks who am I? I tell him my name and that I am his wife and I can see a lightbulb of recognition go off in his head. But that is also when he doesn't understand why he lives where he does and starts to ask to go with me, meaning leave with me. So I am not quite able to think of another way to answer when he asks who I am, because it is so painful for both of us when he realizes I'm his wife.

Groovy's Girl

My Dh used to call me "mom", but now he doesn't call me by any name. I think he knows who I am. He knows I love him, so I guess that's enough. I have an old photo of him on my nightstand. I really miss that guy. 💔 (We've been married for 42 years .)

Grenah

I'm never really sure if my mother makes the connection between my name and my physical being. Sometimes I don't think she knows me at all. I'm the hired help or sometimes she refers to me as "mother". That is very disconcerting. Some people will keep questioning their loved one as to who they are but I would find it frustrating and depressing. I just accept whatever persona I happen to be to her at the time.

PS. Thanks Howhale for the Rogan support group tip. I registered with them