This is love…

I didn’t hold her enough.

I held her hand almost everywhere we went, but I didn’t hold her in my arms enough. Maybe once or twice. I looked at her through my front window once I had said my goodbyes. I watched her there. Feeling so severed from her. So far away even though I was only several feet away. And yet there could have been an ocean between us. The distance felt massive. The emptiness of that moment was all encompassing. And I found myself thinking about how I didn’t hold her enough and how knowing her…her knowing me…my life with her…is fading so fast. I regret that i didn’t hold her more now.

Looking back on my visit with her, I’ve come to realize that holding her hand has become even more routine. It’s partially because I want to know where she is at all times and not wander off, but the other part is more personal: I knew she was already feeling so lost all the time and I wanted her to have something tangible to hang onto. Someone to look to for guidance, for safety, for protection…for answers.

You are not lost. I am here. Feel my love for you. Right here in our hands. You are safe here with me.

Rest.

Come and rest here with me.

So many times during my visit home she would stand in my doorway, fiddling with her hands, looking down, trying to put her thoughts together and continually asking questions. I gave her answers, but in a split second, her mind would fade to black again. It made her so anxious and uncomfortable. I wanted so bad to ease her anxiety. To ease her suffering.

So I told her to come into bed with me. Lay by my side. You’re safe here. Come rest next to me.

If only to give her a few minutes of relief.

She would always happily join me. She doesn’t like being alone anymore. She would either come sit or lay next to me and look around the room, trying to find something familiar about her surroundings. I still find it somewhat unimaginable that she’s forgotten her home. Sometimes it’s down right flabbergasting how far Alzheimer’s has invaded my mom’s brain.

The first time my mom forget who I was, she was visibly shaken and upset. Who wouldn’t be? She cried and begged me to tell her why this was happening to her and I went with the first explanation that came to mind. She seemed to take my theory as fact, but asked what would happen if she never remembered again that I was her daughter. Again, I went with the first thing that came to mind:

Me: “Well…do you like me?”

Her: “Yes…”

Me: “Well then…we’ll be best friends.”

I’ve never had to force a smile so hard in my life. In that moment, I felt like all my insides were leaving my body. My existence as someone’s child was gone. Poof. I told myself to wait to react to all of this because me getting upset wouldn’t help the situation. She needed someone to guide her, to show strength, and kindness. She needed to know she was safe. A port in the storm. So I smiled. I reassured her that everything would be okay. It did not feel okay. In fact, it was the exact opposite of okay, but there was nothing left to do at that point.

And now…the crazy part is – she’s doing exactly what I told her we would do…

This was the first trip where I was more a stranger than her child. There was always somewhat of a vacancy in her eyes. She was very absent this time. She seemed to go in and out of knowing me so seamlessly, but I know my mom. I know how she talks to her child and how she talks to a stranger. Sometimes it was subtle and most times, it was less so. Countless times she would say to me that I was her greatest friend and that she enjoyed spending time with me. I make her laugh. And again, each time she would say some variation of this, I felt vacant too. A hollowness fell over me. Again, like my insides were leaving my body. I felt like a shell. Empty. It wasn’t nearly as bad as the first time, but I was left feeling so numb. And not able to have a proper emotional reaction to it at the time because I didn’t want her to get upset or think someone this was her fault. I always smiled back at her and told her I liked hanging out with her too. I told her she was my best friend. Hearing my own words from my first time this happened echoing in my head: “We’ll be best friends then…” 

I’m still finding it hard to articulate how this all felt. But I kept telling myself – This is love. This is what love is. This is how you love someone. She is worse off than you. Put her first. Simple words or placations of love seem so fickle now. More so than before. Oh it’s easy to say you love someone, especially family because blood is thicker than water for sure, but to really love someone…to really care…and provide care – that is where the depth of your love really exists. It’s turning to someone you love who is sick and telling them what they need to hear, putting their needs before you own. And I just spent most of my time there hoping I did that for her.

I didn’t cry. The whole time I was there. I felt numb. But I knew it would come. I got in my rental car and headed to the airport and just started wailing like a baby. It came out of me before I turned that first corner. Ugly cry all the way. It was a release. I held it together in front of her because it wouldn’t have done her any good and when I was finally in private, my real reaction came through in a big way. And I remember thinking of how badly all of that hurt. Every time she looked at me with vacant eyes or called me her friend. Or when she would talk about my dad, or her parents, or her brother in present tense (ICYMI – they’re all dead). I know I should be happy that when she’s not obligated to love me as her child, she still likes me as a person and thinks of me as her friend, and I am feeling more grateful for that as the days go on, but in that moment: no dice. The sense of loss was overwhelming and I let it out for a good 10 minutes in route to my flight.

But then it stopped. Then I had things I needed to get done. And I didn’t have more time for crying. Life takes over and you just keep moving forward. I haven’t had another crying fit since then which says to me that I’m getting better at coping. It hurt as I thought it would, but I didn’t die. I’m still here. And still hanging onto those slivers of goodness in any crevasse I can find. The part of my trip that I’m hanging onto the hardest is when I first arrived:

She had already fallen asleep. I didn’t want to wake her because rest is so important for her and her sleep patterns are all over the place, but I didn’t want her to wake in the night and find me in bed and be startled by my presence. So I thought a quick hello and goodnight was in order. I got close to her on my knees and rubbed her arm softly in hopes of not jolting her awake. She opened her eyes and smiled. And I thought – Please God remember this. Put this somewhere where you’ll always find it. How relieved and happy she looks. She let out a sigh of relief or maybe more like a breathe she had been holding for a while. And she said, “Hi. I’ve been waiting for you. I’ve missed you.” I was her baby and she had been waiting for me to come home. She called me her angel and told me she loved me. And I told her that I felt the same way about her. We kind of giggled at each other and smiled. And then we just sat there for a moment looking at each other, reveling in our bond.

And for a moment, all was not lost.

All is not lost. Onward.