Who Am I Now That She’s Gone?

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There are a lot of similarities between a small child and someone living with dementia. Specifically, frontotemporal degeneration. I remember so many of my mom’s odd quirks. Once, she poured her Coke into her glass of red wine. She drank it, much to my dismay. My toddler did something similar recently. She poured water into a bowl of hard boiled eggs then she mixed it around and ate it. I immediately thought of my mom. I can’t remember if I laughed or felt sad. Her disease caused her to mentally and emotionally regress… a real life Benjamin Button. I always thought having a young child would be, in some ways, easier than having a mother with dementia. In some ways it is: there’s so much more joy, more laughter, fewer tears. My toddler is also considerably lighter than my mother, and when she is upset or angry, I can actually pick her up and hold her… or relocate her. Something I wasn’t exactly able to do with mom (remember those times with her priest?). Lately though, I have been missing my mom; missing something about her… I can’t quite put my finger on the what. Maybe just her presence. Her scent…. I don’t know. I lost my mom, really, when I was in my 20s… I became the parent and she became the child. Before that, I was living in another city thousands of miles from home. I feel guilty about that. Maybe if I had stayed in Arizona, maybe I would have had more of those moments… precious moments that would have stuck with me, helped shape me into someone better that who I became. Instead, my memories are blurry… sometimes I’ll hear something or get a whiff of something and it’ll transport me to a particular time or place… but they’re few and far between. And sometimes I’ll dream about her. Those are the sweetest nights. I wish she came to me more often.

And then there are times when I can’t feel her at all. The loneliness is palpable.

I thought I would be relieved when my mom died. I was in most ways. I was glad she was no longer suffering in a broken down body. I was glad to put that chapter behind me and focus on my baby. I thought the hurt would fade away, too. Time does some neat tricks when it wants to, and frankly, I lost my mom a long time ago. But what I’m learning is that this kind of loss sticks with you. I know it has changed me. And I don’t know if it’s for the better. The final years were incredibly brutal and how one recovers from such a trauma is beyond me. To wallow in it would be selfish and indulgent, though there are days where I wish I could stew in it. So I try to keep going. I hate when things become stagnant. When that happens I desperately seek change. Is this blog, is the work that I do to share our story stagnant? I mean what else is there to say? Is it — this — the anchor holding me down or the means to truly let go. I have no idea what any of it means or if it means anything at all. I guess the truth is I don’t know who I am anymore now that she is gone.

That’s a little lonely, too.

 

Hey God, She’s Dying. Where Are You?

I’m still coming to terms with the idea that my mom is dying. It hardly seems possible. I mean, I knew, eventually, she would die. But death felt faraway. It still feels far away. If she is dying, it’ll take time. My mom was in OK shape, physically, before her sudden decline; she was decently hydrated, and like I said, the woman has a knack from coming back from the brink. She’s done it before. Why couldn’t she do it again? Never mind the fact that she hasn’t really eaten in six days … just a few bites of sorbet and sips of water through a plastic pipette.

It doesn’t feel like she’s dying. I don’t feel an overwhelming urge to sit by her bedside until she finally passes away. Maybe I should, but what is the point? Nothing is happening. She’s lying there, corpse-like. Sometimes her eyes will open, and then she’ll fall asleep again — eyes still open. I can tell she’s sleeping because she starts snoring. I don’t know what to do with myself, so I squeeze out a large dollop of citrus-ginger scented hand lotion and quietly massage her arms and hands. I say a few prayers, tell her it’s OK to leave this world. And then I shake my fist at God.

Really, you’re going to drag this out to the bitter end, huh? 

It has been ten years — give or take — since I noticed something was wrong with my mother. That’s more than 3,000 days. And here we are. Waiting. Waiting on Him. He must be Latin, just like us… we’re always late.

My mother’s family is very religious. Everyone is praying for her. And if they’re not praying for her, they’re thinking of her. There are a lot of thoughts and prayers are floating around … “You’re in my thoughts,” “Recite this prayer,” “Tell her we love her.” I’ve also been told that God will take her when he’s ready. I realize he’s very busy these days, what with mankind slaughtering one another (in His name), but surely he can move her up the list… I see it sort of like a transplant list. He’s transplanting her from Earth to Heaven. But this dilly-daddling is total bullshit. I find it difficult to believe in a loving, kind God when a) he takes his time escorting her through the pearly gates of heaven and b) this is how he saw fit to treat her these last ten years. With a terribly grotesque disease that has rotted out her brain. My mother who devoted herself to her church and to God. Frankly, I’m surprised the woman never became a nun. A life of prayer would have suited her, I think.

So here we are waiting. Waiting for her to bounce back and resume a life of nothing or waiting for her to die. Peacefully, I hope. And in a timely fashion.

A Hug & A Rag… or Another Behavior

I love my mom. Might be hard to understand the range of emotions that go along with this disease—love, hate, contempt, resentment, humor, respect, disgust, horror, sadness, grief, sympathy, compassion—a roller coaster to say the least.

That’s why I blog.

I write so I can hopefully look back one day and make some sense of it all because this—this situation—is not how our lives were supposed to play out. Watching your mom deteriorate in such an inhumane way is not normal…………………………………. of course, there are moments…… sweet, touching moments where I’m really taken aback by who she is, what she’s become and how at her very core, she’s still such a lovely person. This disease does something to the brain—it strips it of all our masks. You’re no longer playing roles, pretending to be a character in the play of life—you are raw, grotesque, and what you see is what you get to the very core. Your essence is revealed and there’s no covering it up. No more hiding. You have no control. So while, I may think about the day my mom dies, I also think about how long it will take me to recover from her passing. You see, I will miss my mom. My mom’s sweet. She’s kind. She wants to be in the middle of everything………… mixing and mingling……………….the hostess…….. I saw a glimmer of her heart just the other Sunday.

A good thing because it’s so easy to lose sight of the positive.

Our neighbor came over and while I had no idea who she was, my mom immediately went over and kissed her…. “Hola, I luf you. I don’t speak English (in English), but I luf you, you’re so beautiful.” I was touched. I almost cried. Her genuine emotion and joy at seeing this woman was truly remarkable. Pure sweetness. Pure heart. You don’t see that sort of honesty in life anymore…….. and then I understand where I get my own lovey-dovey ways with those close to me. I am my mother’s daughter.

But with dementia, there’s the flip side……… and then there’s the rag……… a new behavior, actually. Here’s where I go from tender thoughts….. to having to walk away. My mom, in her usual TMI sort of way, told me that she had to pee (she does this by touching herself)… I scooted her along to the bathroom and then she opened a drawer to pull out a washcloth……….. confusion. What is she doing with that? She tells me in a mix of Spanish and words that make no sense unless you speak fluent dementia like myself that she’s using it to wipe herself.

“She uses that now to wipe,” said my dad who was sitting on the edge of the bed. “I don’t know when it started, but now I have to take it and wash it… she gets bent out of shape when I take them away.”

“She’s never done that before,” I said.

“Yeah, well she never used to do a lot of things….” he replied.

He looks exhausted.

She wipes herself with a washcloth and puts it back………………. I had to walk away. There’s always something with her, with this disease…………………. where she goes from incredibly sweet to vividly grotesque in an instant.

I don’t understand how her mind works. She doesn’t know my name, but she knows where I came from—she points to her belly and tells me that I came out of her.

I guess childbirth is the kind of pain that really does stick with you despite the mess of plaques and tangles and whatever else is gnawing at her cortex.

I don’t know. I really don’t know what to make of it all at the end of the day. This blog is a record of my experience and these are the moments that I see and capture…………………… my words are like a camera.

I don’t want to remember my mom as the woman who wipes with washcloth, so I try to temper it with her sweetness, her heart……. she’s there……..

Margarita Ritchie. Mom. Wife. Sister. Aunt. Cousin. Daughter. I think of her mother……. my grandmother…….. and I often wonder if she’s in heaven crying for her baby girl…………. just trying to reach out and hold her from beyond…. to comfort her daughter; to let her know that she’s safe and nothing can hurt her.

When I go deep into that place. I cry.

My heart bleeds for her.