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.

 

Blood and Water or Family Dynamics

I’m feeling lonely again. I hate this feeling. It’s a feeling usually mixed with sadness and hurt. Potent combo. Can leave you in a funk for days….

A little context………………… my dad and I are once again talking about nursing homes…. mom is just getting to that point where caregiving is difficult. She’s having more accidents and she’s had a few other truly demented moments…… trying to eat raw chicken, wiping herself with a maxi pad wrapper (that was Sunday’s WTF moment — she took the wrapper out from the tampon bin)….. we do our best, but the woman needs constant, 24/h care.

I was mid-pee when she walked into the stall, peed and wiped with a maxi pad wrapper……….. so much for wait for me.

The nursing home topic is a sensitive one at our house…. my dad hasn’t wanted to even discuss it since “the incident…” the one inside the bin until recently. He’s tired. Caregiving is a stressful job, one that is often ignored and the toll is terrible…. depression, anxiety, sickness, loss of wages, etc….. So we’ve started talking about it, and this evening, I started doing a little preliminary research.

In the middle of my search, my cousin sent me an e-mail… nothing to do with my mom; I sent her an IM with my response…. we started chatting. The topic of my cousin, the one who was upset at the name of my blog (among other things) came up…… I started to feel those feelings again…. just hurt, resentment, frustration and anger….. the usual suspects. I recently sent her an e-mail congratulating her on some news and we e-mailed back and forth for a bit…. nothing more….. yes, this could be called progress, but I think it’s unlikely. I know that our relationship will likely never be repaired, something about the whole ordeal bothers me….. it’s like this itch. This annoying itch that’s turning into an oozing sore.

And then the stories pop into my head.

A little background………………. my cousin and her brother scolded me publicly on Facebook in front of other friends and family (I had posted pictures of my mom and titled the album, “My Demented Mom”)… Take that down. This is not a joke, wrote my cousin

Really? I thought this whole situation was rather comical……..

Thank you, wrote his sister.

I retorted, calling her passive aggressive……………… the retorts escalated and went back and forth from there………….. At the end of the day, things could have been handled better by both sides……. still, I can’t shake that virtual dialogue.

I suppose because I wonder what my mother’s family thinks of me………………… My Demented Mom is lost in translation……………. despite translations.

Or, maybe what’s really getting my panties in a severe twist is this…………….. do they care about me as much as they care about my cousins?

Would they, or do they, defend me?

Where do I fall on the family totem pole?

I guess that’s what it comes down to………….. am I truly alone? I feel like it.

A lot.

Yes. I am aware of my own flaws and fault. I have a few………………………….

It’s easy to say, “I love you,”  “I’m here for you,” or “Thinking of you,” but when it really matters, do we actually mean it?

 Do they mean it?

Would I mean it if the roles were reversed?

Do they ever wonder if I’m sinking under the stress? Would I wonder?

Do they know that I have cracks in my own facade? Would I know?

Family dynamics are always tricky when it comes to a serious family illness… old resentments and new anger festers until it just explodes………….

I don’t know why this still bothers me. I wish I could let it go, but I can’t.

I’m still clinging onto my own hurt feelings.

It sort of makes me want to run away from everyone………………

Maybe blood isn’t always thicker than H2O.

>>Flickr pic by my favorite Meredith Farmer