The last few days I have been resting, processing, planning, and resting some more. The cumulative physical exhaustion of the past few years seems to have caught up to me. Yet, it is different than the heavy sleep/sleepless roller coaster of those years. During the dementia journey, it has felt like trying to sleep with a boulder on my back. Hard to get up. Hard to get going. Hard to get anything accomplished. It seemed to me to be an extended funeral. Years of saying goodbye. The long goodbye it is called, and it is so very difficult.

Watching Mom fade was like a hammer and chisel to the heart. Each loss of hers was a hammer strike. Loss of mobility…bam. Loss of communication…bam. Loss of memory…bam. The losses just kept coming and coming. With each one, a part of her was gone, and my heart took another blow until it was shattered to bits. Death by a thousand cuts. Slow. Painful to watch. The burden of sorrow was my constant companion. Always trying to reach her and connect became the way of life. Some days I was successful, others she was lost to me. My joy was when Dad was able to pull her back, even if just for a few moments. Towards the end, even he had trouble bringing her out. That was the biggest blow, because their Great Love had carried us all.

It is crushing to watch two people you love so much go through such pain. We have lived without her for these years, while she was still here. It was her, but not her. I cannot tell you how odd that feels. Snippets of her would surface in a facial expression, or mumbled unintelligible words. A cut of the eyes, a frown or a smile. She was in there, I could see her. I wanted to engage in a discussion, only to remember that wasn’t possible. We did get pretty good at one-sided conversation, imagining what she would say, and answering her as if it was the most normal dialogue we had ever had. However, there were so many days I longed to talk, really talk with her. Like we used to.

She lost her ability to hug, or even the desire to embrace us. I missed her touch long before she got to the point she couldn’t hug anymore. Her way of reaching out to comfort was lost. She still puckered up for a kiss from Dad frequently, and the last week she did it for each one of us. It felt like a gift.

Even with all of this loss, we are amazed at how peaceful and joyful she was despite the fact she could do nothing on her own. She didn’t know anything or anyone. Her faith and her God were carrying her, even when she didn’t know it. She may have forgotten, but God didn’t forget her. He was visible as her constant companion. She still radiated joy. She had the peace that passed her own understanding. It was beautifully difficult to watch as one who was a witness.

Bearing witness was all I could do. It is a helpless feeling to observe a brain die slowly. Brain failure is a gradual incremental process. When it is your mom’s brain that is failing it is all the more painful. She is disappearing. Everything you knew about her goes away. Her expressions of love fade until all that is left is the sparkle in the eye, and at the end, even that was gone. She was a trooper, as the disease took its course, she continued to connect as long as she could.

Now, we have all her books and journals. They are covered in her notes and highlights. I read some of her favorites to her in her last days. Melinda found this in one of her journals. Notes in preparation for a retreat perhaps? Not sure, but they are profound now that she is gone. It seems she followed her own words:

Letting Go- Letting Be

Welcoming prayer/practice  

Staying present to pain

Emotional/physical

Sit there. Not run from it. Sit in sensation without the story.

Welcome grief.

Hold in that space. Part of the sacred circle.

We do not fall out of God.

Words to us from her. Now that she can communicate again, we are seeing her around us. Her journals are one way. Nature, for me bluebirds, are showing up every day. Last night, a sunflower, her favorite flower, was on our table at the restaurant we went to for our anniversary. The only table with a sunflower in the whole place and it was our reserved table. I believe in these little nods from Mom to comfort us and to let us know she is still a part of our days, just in a new way.  

So, I guess I shouldn’t be surprised at how joyful I am that she is no longer trapped inside that body. That brain which held her captive has released her. She is free. When I have a memory in which the tears surface, a smile also comes because I know she can remember it now, too. All of the “before dementia” times are fresh, and feel new again. They overshadow the hard times at the end. The life she lived is resurfacing in my mind and that makes me happy. It feels less like a death and more like a resurrection. Like the hard part is over and the new has begun. I am so grateful that she is not trapped any longer, and that she is with the God she worshiped her whole life. I will miss her physical presence, but her spirit is still with me.

Some might say I am in the denial stage of grief and they may be right. If so, I hope to camp here for a bit. I want to sit in this joy for Mom. I want to soak it up. I am more than grateful that she is whole. I am not missing the boulder that has lifted off of my back. I like the light feeling and the pep in my step that I haven’t had for the past 7 years. It feels wonderful to wake up refreshed each day. I didn’t expect this joy. I am surprised by it. I had braced myself for an overwhelming sorrow, but it turns out I have been living with that sorrow for a while now. And it is gone. The marathon is over. We made it to the finish line. I am proud of that. Now is the time for recovery…and for joy.