This afternoon my loving husband of 32 years asked a question I was dreading to hear. “Why don’t I remember you?” I’m devastated, help me.

Dear Donnamarie 58,

The hardest thing I endure in my everyday struggles helping mom take care of my dad who has dementia, is watching my mom suffer along side him. They have been married for 65 years. It’s hard, as his daughter, but, it is sooooooo much harder on Mom. It has to be so much worse for you, like mom, to be so deeply in love with your husband and watch him become a stranger right in front of you. It is heart wrenching to see the pain that you feel.

it will eventually happen to mom the same thing that happened to you. It has already happened to me. Even though I’ve been back home for a couple of years now, here with him everyday, he has forgotten who I am. :(

I wrote this poem I would like to share with you:

My daddy forgot my name today
It seems so strange to say
This day became eventual
As daddy fades away

Letters on white paper
Not etched into his mind
Just a word, just a word
A word he could not find

Repeating my name
Five, Ten times... gone
Trying to grasp and keep it
Asking, "What went wrong?"

Gone... but forgotten
Blurry time and space
What's in a name, Dad?
See the smile on my face?

We put our trust in God
One hour at a time
We cling onto Dad's spirit
As time erases his mind

Our love knows his heart
A heart that's strong and true
We remember his strength
And the things he used to do

We treasure every moment
We treasure every smile
From dawn to time for bed
Facing each and every trial

Outside a storm is brewing
The world is in a hurry
Unkind words and heartbreak
Stress and work and worry

In the arms of God, 
Where we are living still,
Peace returns, enters joy
Blessings are so REAL!

My Daddy forgot my name today
And, that's OK with me
Believing in what God has planned
Is all we will ever need

A lot depends on the underlying cause of the dementia and what part of the brain is impacted. I was able, through different statements (her asking for her mother) and other "discussions" to figure out my mother was "living" her life about 40 years ago. I was visiting on a regular basis up until the virus, so she got "reinforcement" for my face, etc. (of course your husband sees you every day, so that's a different issue.) Even though she was back 40 years ago, I would have been an adult by then - younger, but still an adult. Her "step back" in time happened about 9 months after moving to MC, and pretty much stayed there. Eventually there would have been additional step backs, but she had several strokes first.

I know she still knew who I was because a staff member took a pic when I was dropping off supplies and showed mom. She asked why I didn't come in, so clearly she still remembered me. Sadly before that and after the stroke I did try some visits (one outside, one later inside after the stroke.) Between dementia, poor eyesight, limited hearing, masks and keeping distance, it isn't clear she even knew I was there. The picture indicates she would have, without the masks. I regret not taking it off and getting up close during that last visit.

Before the virus, my daughter wanted a pic, so we had someone take one of the 3 of us. When I showed it to her, she asked who "those girls" were, indicating the two of us! Then she asked if that was Nana, pointing to her image and referring to her mother. So, her own self-image was distorted too. She'd also forget she wore a hearing aid. When I'd ask where it was, she'd say I don't wear one. I'd find it in her room and bring it to her. Then it was "Where'd you find that?" Most likely that hearing aid was probably just coming into the picture around that time, 40 years ago, so she'd forget, but then remember!

So, perceptions do change. Recent memories are lost, just like the short term memories. It isn't just forgetting the recent times. Over time more and more recent memories are lost, but longer term memories, including parents, childhood siblings and homes, etc. stick around longer. Eventually even those are lost.

"But, I still don’t understand why it’s only me he doesn’t remember."
and
"It’s funny, he remembers his early childhood. Memories of his mom, dad, and siblings. Places he lived and good times growing up with his brothers. He even remembers his ex-wife."

More than likely it ISN'T just you he doesn't remember. Has anyone else come by to visit? Does he have children? Do his siblings visit? Old friends or neighbors? Because of the virus, it's probably just the two of you. Once it is safe to have others visit, try that and see what happens.

"I just wish I can know where I exist in his memories."

Given you've been married 32 years AND he remembers the ex-wife, you can likely peg his "life" at more than 32 years ago, just as I was able to peg my mother's "life" at about 40 years ago. Asking the right questions might help bring his current "life" into perspective.

"I guess for now I can be thankful for the good days and not dwell on the bad."

Yes. Even if he doesn't know who you are, so long as he is agreeable and accepts having you there, go with it. YOU are the keeper of the memories now. Cherish them. If he's having a bad day (or hour or week, etc), go with the flow. He accuses you of taking his money, just say you set it aside for safekeeping. You'll have to figure out his hiding places, so that if he asks for whatever he's accused you of taking, you can locate it and present it to him.

If there are other family members or friends and neighbors you were close to, I would try the "test" when it is safe to do so. Have visits with just one at a time and see if he recalls who they are. He might not recognize his own siblings, if his mental image is a 10 yo, not an older adult! You may find that you aren't the only one he has lost memory of.

It sounds like you handled things perfectly.

My mother seems to remember (or forget) people or things one day and then she'll be perfectly fine the next. One day she thinks she's still married to my dad (now divorced over 40 years) and doesn't even remember my stepdad (Earl) of 20 years.....the next day she's reminiscing about how great Earl was. Things can change by the hour and it's all beyond their control. I think one of the hardest times for me is when my 81 year old mother.....calls ME mom🙁

While this is really sad, it's very common with dementia.

Accusing you of stealing is common as the dementia gets worse. It may be something that medication can help with? I'd talk to his doc. He appears to be declining into a new level of dementia, IMHO.

As you're seeing, he is not himself anymore. As I have learned here from other posters, his brain is broken. You have to learn to NOT take it personally. He is not the man you married anymore. I'm sure you are grieving and this is a big loss. Especially at such a young age.

Regarding why is it only you? Basically, who knows? Dementia is a cruel and unpredictable disease. You can't expect to make sense out of it. The best you can do it learn how to roll with the changes that will continue to come your way.

I hope that you are getting some in-home help. You need to have some time and experiences away from your husband. As things progress, you will also probably need to consider when/if you will need to place him somewhere where he can be monitored 24/7. It's a 24/7 job and it's rarely feasible to do that at home. Not without lots of help anyways.

So sorry for this difficult situation you are in.

Your story is heartbreaking. I am so very sorry. It’s crushing not to be recognized by a loved one. I was upset when my godmother no longer recognized me. I can’t even imagine having my husband not recognize me. That to me is the absolute worst.

HI sweetie. First,here's a big hug because I know you are devastated. The first time my husband asked me where the "upstairs girl" went, I locked myself in the bathroom and cried. There are just the two of us in the house, and it's a one-story. He thinks he is in his childhood home, where the bedrooms were upstairs.
I explained there were only the two of us and that I am the upstairs girl. He just smiled like he was humoring me.
I am alternately the upstairs girls, the person in charge, his high school girlfriend, and that other one.
His caregiver told him I was his wife named Maggi and he told her he needed to see proof.
So, my advice is to go with the flow. His brain is broken. He is not the man you married anymore, but you have all the memories of all the good times. That's what keeps me going.

I understand what you are saying. I was prepared and provided different pictures of us through our years together. He studied the pictures and still seemed confused. It’s funny, he remembers his early childhood. Memories of his mom, dad, and siblings. Places he lived and good times growing up with his brothers. He even remembers his ex-wife. I just wish I can know where I exist in his memories. I guess for now I can be thankful for the good days and not dwell on the bad.

Q: Why do people with dementia remember some people but not others?

A: "For some people with dementia, the gradual loss of recent memories means the person may still remember you, but expect to see a younger person in front of them. In others, the part of the brain that is responsible for recognizing faces can become damaged. This is referred to as 'proposagnosia'."

Here is a link to a helpful article on the subject with tips about what you can do:

https://www.dementiauk.org/get-support/understanding-changes-in-behaviour/things-to-try-when-someone-with-dementia-stops-recognising-you/

It can happen that your Dh will have good days & bad days, too. My mother is 94 with advanced dementia; she calls me her mother. She has days where she believes her mama & papa are alive and others where she's almost her old self. Every day with dementia is totally different, keeping us off kilter ALL the time! My mother lives in a Memory Care AL, and I will tell you, it's been a real Godsend to me b/c it's just too much to deal with advanced dementia at home, for most people. She gets a GREAT level of care in MC and I go visit her on Sundays, so it works out well. You may want to look into Memory Care for DH as well, for down the road, so you have a Plan B in mind if need be.

Good luck!

Donnamarie - How did it go looking at the albums, do you think it may be that he doesn't recognize you rather than he doesn't know you or remember you? That his mind is now in a different time and he can't reconcile this 63 year old woman with the sweet young thing he expects you to be?