Wondering if you ever feel like you are grieving for Alzheimer's patient that is alive? As it's like they have left their vessel?

When I look at a photo of my Husband prior to the Alzheimer's I see a man that is smiling (most of the time) with a sparkle in his blue eyes.
When I look at photos taken even as soon as 1 year after his diagnosis I rarely see a smile and the blue eyes that once sparkled are no longer sparkling.
I came up with my own theory (a wacky one but mine..) I have always heard that the "Eyes are the window to the Soul" My theory is that God takes the soul early so our loved ones would not have to know what the body would have to endure. So I was left with the shell to care for until the body was ready to go.
I also mourned him while he was here but I also rejoiced in the funny, quirky, things that happened because for a brief time I would catch a glimpse of him once again. (almost like he came for a visit then was gone again)
I thought I was prepared...
I thought I knew what my reaction would be....
I thought I was ready....
I felt like my heart had been torn from my body and stomped on!....
I felt like I could not breathe!....
I felt like a part of me died that morning!....

2 major organs in your body are fighting.
Your heart. You don't want this person to die, you don't want to be left alone..
Your Brain. You can not imagine this person you love living like this, not knowing family, friends that had been such an important part of his/her life. No more laughing, no more sparkling blue eyes...
You hope you make the right decisions, you want the heart to "win" but have to give into the brain.

I think there are 3 parts of grieving
1. During the course of Dementia or any major terminal illness.
2. At the time of death.
3. Living afterwards.
It is what you do after that is what is important. What would your Loved One have wanted you to do. Sit and mourn for the rest of your life essentially wasting it.
OR
Enjoy the things you did together, go to the places you said you wanted to go, do good with your life, share what you have learned, help others going through what you have gone through.
This is how I am living my life, that is what he would have wanted.

A hospice director said to my friend when this friends mother had Dementia “your mother will die 1 time but you will die a thousand times”. This feels true to me as I care for my mom 24/7. She has had 2 strokes and has Dementia with aphasia and apraxia. It is so hard to watch them struggle.

Yes! My dad has been at a memory care facility for over 2 years now. Some of the residents have been there for a decade! They all wander around, lost and confused every day. Some are angry, some are sad and cry off and on all day. Some wait by the door for their spouse or someone else. It's horrible. Limbo-land. It sounds awful but it makes me think of zombies :( Pretty much just waiting to die, wasting away. There has got to be a better solution. My dad discussed suicide and certainly said he would never ever want to live this way. I will be relieved when he passes. I'm not even sure I will cry :(

Yes I always say that I am grieving for what was. I grieve for the conversations and the for the memories that my husband no longer has. I am the one who holds the memories. Grieving is part of this disease and it makes me very sad. Little by little he is taken away and I take one day at a time. I ask God to give me strength to make it through.

There is a name for this: anticipatory grief. It's one of the reasons Alzheimer's is known as "the long goodbye". When a person changes gradually over many years it can be hard to keep hold of the person they once were, I was even questioning whether this new, weak, needy, selfish person was my real mother and my memories were false or she had lived a false life.

AgingCare has a couple of articles you may find helpful:

https://www.agingcare.com/articles/grieving-before-death-terminally-ill-116037.htm

https://www.agingcare.com/articles/dealing-with-alzheimers-personality-changes-147375.htm

Having lost my mom and oldest brother to Alzheimer disease, by the time they got to be incoherent, the person I knew was gone. I try to look back on the good times, and remember them both how they were before the disease took hold. It was a blessing when they passed away. Who among us would want to exist like that, with no hope. Your loved one is very near the end now.

I know I did, watching my mother slip away. She became consumed by hallucinations and delusions. I fought hard against becoming her “mom” and switching roles with her, but I had to put on my big girl pants and just do it. She’s been gone for 2 1/2 years and the sadness is still there.

It's such a cruel disease for the person who has it and cruel for the person's loved ones. Interaction with mom is like talking to an 8-year-old who keeps regressing, not growing up. Yes, I'm grieving now and expect to grieve all over again when she passes.

Mom has mixed dementia (Alzheimer's and vascular dementia). At my last visit, I noticed a steep decline from the previous visit, which isn't unusual for vascular dementia. It hurts to watch the downward spiral. Thankfully, she doesn't seem to be aware at all.

You are grieving the loss of the person you remember. This is normal and a process. You should move from the feeling of loss to acceptance.

Letting go of what "was" is tough, but you can also celebrate what still remains of your loved one's abilities. Find ways to engage in whatever ways are still possible.

Please consider joining a group with caregivers dealing with similar issues. You need the support and empathy that you are not alone in this,

Oh, absolutely...every day. But I am also thankful that my mom knows me, my name, still feeds herself, loves music activities, can converse ( but not remember 5 min. later), and enjoy her hobby of eavesdropping. This will all change, of course. I grieve that she is having to age this way. She always hoped that her end would be simply not waking up one morning. I worry most about times when she is suffering, either emotionally, cognitively, and physically.