I am finding it is hard to sit with ongoing grief. It is different than a “regular” loss, if there is such a thing. This dementia journey comes with more ups and downs but with a steady downward trajectory. I find myself trying to dissect my feelings. I am happy I still have my mom. I am sad that she is no longer my mom. I am happy she is happy. I am sad she doesn’t know who I am. I am happy she is well cared for. I am sad I can’t talk to her like I have done my whole life. This up and down emotional roller coaster is draining. Good days and bad days. She is gone, but she is here.  

I’m not sure how to navigate this. Therefore, I write about it. To sort out the emotions of it all. To try to name what is causing my pain. Somehow, if I can name it, I can understand it and cope with it. It becomes visible rather than some nebulous unknown heartache.

It is all grief. This much I know. Grief comes in so many forms it can be hard to identify. I tend to think of it as deep sorrow because that is the most common definition. It is the most familiar one to me. Yet, this journey we are on is not all deep sorrow.

Then there is loss…the fact or process of losing something or someone. This seems more like what I am walking through. It is definitely a process. Daily. Ongoing. Always in my heart that I am losing my mom.  Some days, I think it is the combination of both grief and loss that feels so overwhelming. Other days, I am content to just see her happy.

One thing I have discovered is that I miss who we were together. Our relationship. Our talks. Who I was when I was with her. I wonder if I am the same person now. I enjoyed our roles and how we intertwined as mother and daughter. That part is gone. I like looking back and remembering things that bonded us. Book discussions. Spiritual talks. Cooking together. Antiquing and galivanting. (we are southern women after all)  Just being. Together. I want to talk to her about all of that. For her to remember, but alas, it doesn’t do much good. She might nod and say “yes” if I bring up something from the past, but it is an automated response. There is no recognition in her face.

We haven’t always seen eye to eye, but that is part of the relationship that is gone now as well. Our differences. Our similarities. The fabric of what made our relationship, is missing. But to cope with the present, I find myself returning to the memories in search of the fabric. The tapestry of our interwoven souls, mother and daughter. To remind myself of what was real. To feel like me again.  

In my mind’s eye I see a jigsaw puzzle of the two of us. It is whole and we are smiling together. Then piece by piece it is slowly disassembled. Mom has all but disappeared because there are so many pieces missing and now the pieces on my part of the puzzle are being removed as well. She has lost me…and I have lost her…but in the process I have also lost myself and who I am when I am with her.

It is a shift. It happens when we lose those we love. We go on when they are gone…or try to. But I think most of us also lose parts of ourselves when our loved ones are no longer around. We look back grasping for who we were when we were together. I think that creates a sense of being lost. Not knowing what to do to fill the gap. Not wanting to fill it, but having no choice. This lostness underlies our identity. We have to find new parts of ourselves. Maybe some parts will be entirely new, while still looking back and holding onto who we knew we were when we were together.

Dementia takes you through all this at the same time. Just when I think I have accepted where we are, I find we take another turn and I have to start over with the new reality. It’s like living the stages of grief over and over again because there is no closure. I know it will come someday, but for these days I find myself jumping all over the place between the stages.

And more than anything, I am tired. The emotional toll sucks the life from your body as well. Sleep is healing, needed, and an escape, all at the same time. My mind is mush most of the time. I get through the days fine, but it almost feels like I am living in a constant state of limbo. Not knowing what is next, but knowing we can’t go back to the comfortable places of the past. Where I knew who I was in the warmth of my mother’s presence. Where the security of being known and loved was my daily bread. I am grateful for those times, and sometimes I long for them again, but I have to remember those days are the ones that made me who I am today.

Now. It’s all I have. Ironically, it is truly all Mom has. Right now. In five minutes, she will not remember this minute. She will not know if I came for a visit or not. She will only be aware of the moment she is in currently, and sometimes she is not even aware of that.

There is a lesson here. Be in the moment. Look back, but don’t get stuck in the past. Only live for what is in front of you. Otherwise, you will miss what good is left by wishing for what was. As much as I want to go back to the familiar identity of being the daughter and having my mom speak into my life and share her heart, this journey doesn’t allow for that. I wish I could tell her how much those times meant and she could remember my words. But for now, I will remember who she made me to be because I know, as a mom myself, we pour into our kids so that when the day comes, they will remember who they are…without us.