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Only able to remember just a little bit of how to be alive. It's as if they are stuck between life and death and goes on on on on and on on it never gets better. Do any of you think that when this is over that feeling will go away?

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.
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Reply to Grandma1954
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LexiPexi Jun 28, 2019
What a wonderful answer. Some very good comments. Thank you.
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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.
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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 :(
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cwillie Jun 28, 2019
I had to chuckle at your zombie comment - last Halloween I thought the nursing home would be a perfect setting to stage a zombie apocalypse event!
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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.
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LexiPexi Jun 28, 2019
My husband has stage 4 Parkinson's, dementia and is clinically blind. Your post could of been my post. A lot f comments on this site are for parents. For some reason (for me) - it is different when it is a husband or spouse. There is a book titled Ambiguous Loss by (can't think of her name right now). If you haven't heard of it, you might want to look it up online. Also, The 36-hour Day (book), might be helpful too. If you are like me, I don't have time to read any more, but try to read a couple of pages when I can.
Best to you...
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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
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madzeena Jun 28, 2019
Thanks for the links. Read both articles. I think the distinction between “early grief” and anticipatory grief is a good one. Once there’s a diagnosis it’s the beginning of all kinds of losses and grieving.
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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.
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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.
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Lorraine12 Jun 27, 2019
Ahmijoy; Thank you for answering .I always worry if I posted my questions correctly in the right places for instance I wondered if I should of posted this in discussions I just realized the the difference .This mind scrambling disease.
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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.
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Reply to CantDance
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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,
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Rome36863 Jun 28, 2019
Highly agree with Taarna about joining a support group. This is a good start right here. It's always good to know that you are not alone in what you are going through and that they are others who are going through or have gone through the same. Sometimes just having someone to talk to about it is the biggest help you will find.
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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.
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