Anticipatory Grief. I have it.

Anticipatory grief refers to a grief reaction that occurs before an impending loss. That is the definition. I don't know about the stages I am in, have been in, will be in. I don't keep tabs on my own emotions, I just get emotional.
Dec 24, 2011
I've never lied to myself about his disease, this Lewy Body Dementia. I know no one comes out of it alive. I don't think I have ever been in denial. I've lost people from of other types of dementia. This won't be new. What is new is that I am the caregiver. Before it was just a terrible disease that someone had and not much more than that. I thought it was about memory loss. I have been educated in short order that I was wrong.

Anger? Absolutely. It is so unfair. It is cruel. If it were a physical being I would find a sledgehammer and beat it to a pulp to ensure it never affected another life. Ever. It being any form of dementia.

More anger at the Army and WTU for their part in stealing years that I could have had enjoying him. Stolen. It can't be given back. Ever. Saying "I told you so" will never make me feel better about what they have done. Empty apologies do no good. Change for the future soldiers is what will matter to me. The next time a family member is speaking and saying something isn't right they need to listen and act.

The only bargaining I've done is to promise my husband's life won't be in vain.

Depression? Yep, it's there. Who wouldn't be depressed in this situation? Staying as active as I can helps ward it off. By active I mean sitting at the computer and researching and speaking out. It also means generally driving people crazy with my assertiveness. Which by the way, I am not assertive. I am hyper. I am actually very shy. Stop laughing!

Acceptance. Not yet. Maybe in ways I have. It's just that I cannot imagine life without him. So for now I will focus on the life we have left.

I will be going about my day just fine. Then a word, a memory, a smell, a sound, any number of things can trigger me. I will cry. It is an ache that cannot be described. As if he is already gone. You know what though. The husband I knew is gone. There are bits and pieces that come out. But his "whole" is gone.

I share on my personal Facebook page far more of the details than I share here. I also have a private journal. I do this for myself. I want to have memories. I also want others to understand a little more about what living with a person that has Lewy Body Dementia is like. God knows how ignorant I was about the subject. I'm sharing our life with others to bring awareness and understanding.

It is about what no one else can see. There are similarities in dementia but each person that has it will be different from the next. The prognosis is also difficult and involves many factors including the over health of the person. There are times when I look at my husband and think things will be okay for a long time. Then there are times, like recently, when I realize our time is running short.

On day 15, which was Thanksgiving day, he ate a little. Nothing near what a healthy person might eat on a normal day but he ate. He knows he has to eat. He tries. There's not much success.

My concentration is gone. Focusing on one thing is nearly impossible when so much happens all at once. That's partially due to lack of sleep too. Sleep is something a caregiver treasures most. Sleep is broken up by needs of the one we love or we don't get any sleep at all. Each day is different. On those rare occasions where a loved one does sleep at the same time we do it is glorious. It is a respite.

I try to live in the moment. I really do. I enjoy the laughter we still share. The storytelling. Just holding his hand. But I get triggered. We are buying our first home. We don't want to be in Texas anymore. There is nothing here for us but bad memories. Yes, we have dear friends, but not that strong bond with family that we both need.

This process makes me think ahead. I have to address the "what if's" and the "maybe's." I will try to speak, try to keep my emotions numb. But without warning a word will get stuck. A huge, painful lump in the base of my throat. The only way to get it to go away is by letting my tear ducts open. The tears reduce the size of the lump so that I can speak again.

Anticipatory grief suggests a person may rehearse the death. I don't need to rehearse. He has planned everything so I don't have to. I don't need to rehearse because I simply know. No life-saving measures. No funeral. Cremation. Memorial service. That's the simple version. But it's laid out.

Anticipatory grief can be a time to resolve issues and say goodbye. There are no issues, really, none. I am truly blessed. Saying goodbye? No, not ready for that.

Because I am experiencing this type of grief right now there is a chance I will grieve less later. I don't know. I just can't imagine my life without him. The years we've had will never be enough.

This grief brings isolation. Isolation because I spend all my time taking care of him (and wouldn't change that for a thing!) and it's all I know right now. I'm certain my friends are tired of my grief. I don't blame them. I really don't. This isn't easy for anyone. I will get my life back some day. I will be fine again. But right now, this moment, HE is what matters most and I will talk about this.

His family was here for the weekend. I cannot begin to describe the pain and grief I felt during that visit. I was also so happy. There was so much love. Each one spent time cuddling with him and just talking. My heart could not have hurt anymore than it did when they left. I can't even finish my thought here.
Mikey and his daughter spending some cuddle time. 
I was worried that after their visit he was going to be ready. We talk openly about it. He does want to let go but he says he has one more thing to do and he won't until he sees it through.

It has taken me days to write this. Thinking, walking away, staring, wondering. But that's it. Scattered and thought out at the same time. It's my reality right now.

If you know someone that is a caregiver, please take a moment out of your schedule to do something for them. Don't ask, just do. Gift card for dinner, make them dinner, run errands, etc. They need your support because they are spending all their energy on the one they love.


Unknown said…
Robin, I pray for you and Mikey everyday. I know the grief that you are speaking of :( I deal with it daily. Doctor's have brought Len back 3 times because I wasn't ready to say goodbye, Len has since made sure that won't happen again. Cherish each moment and remember the caregiver needs care too. Love you
Robin said…
Thank you Kathy. I would bring him back as often as I could too because I doubt I'd ever be ready to let go. It was an act of love by him to take it out of my hands. More love back to you!

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