Monday, February 15, 2010

Waiting On My Thirty Pieces Of Silver

Posted by Leslie, Daniel's Mom.

Ante-script: My mother has early onset dementia. She is not yet 70 years old and her deterioration is fast, quiet, harsh, and ceaseless. Suicide is very rare among patients with this type of dementia (mostly because they haven’t the ability to plan and process the act) but we have a strong family history—her own father, in fact. Today my father took a gun out of her hand but I can't speak to how or why it was there. I am not there. I can’t be there. I am far away with three children—one is Daniel, my little piece of God. My sister is there, but for reasons never given, she wants nothing from me—I “breeze in” for visits. (Anybody else “breeze” anywhere with a special needs kid? Did I miss that workshop?) Anyway, this piece is almost a year old (2/09)—she visited us back then with the fully disclosed understanding that I would submit my observations to her doctor. Truly, as much as mothers watch our babies change in a year, so has this daughter watched her mother change, only in a backwards dying way. I will need to write on this again, so background information seemed only fair enough to offer.

I submitted my super (and completely un-) secret documentation of mom's visit to her doctor as directed. Or, rather, I emailed it to my dad and he submitted it because I just couldn't send all that crap directly to a stranger.

You see, I told on my mother. Laid out her secrets, one by one, day by day. I kissed her on both cheeks and now they will surely come for her.

It would appear that my mother is only able to function as a result of my father's constant vigilance and well-honed sense of I-Know-What's-Rightiness. It would appear that way because without my father, she is just simply un-able. Unable to what? Well, it's all right there in the document, and frankly, you should probably be on the lookout for a copy because my father is forwarding it around like one of those 'This is Cute' emails. And this, this horrid thing that is scraping my mother away from the inside out, is not cute at all.
She's been gone a week today and my anger is becoming soft and grief-y. Well, you would be angry too (maybe) if you had to hide food and tape containers shut and guard your kids' snacks and wonder why the autistic kid keeps bringing his empty snack bowl back for more crackers(vocab: perseverity/eating disorder--elderly onset) and double check the doors and gates left open and listen to endless lies (vocab: confabulation) and accusations that your Daniel stole her watch. And you would especially maybe be mad if you, somewhere in the back of your head, thought that When Mama Comes It Will Get Better. It was not better. It was her making kids cry at the twins’ birthday party because she wanted to Huuuuuuuug them. Like a very scary Grandma Clown. It was her ignoring her beautiful grandchildren unless they were packing graham crackers (vocab: apathy). It was her describing her father's death (suicide by gunshot, btw) to your children in lurid detail while you did everything but gag her to stop it (vocab: comportment and insight, executive skills). God save me, it was her wanting to pray over Daniel so that he might be healed. Healed. (See prev. entries regarding how he's glorious and I am a mess) I could not bear for Daniel to hear what she might say during this over-praying thing(No vocab for that, but boy, it pissed me off something fierce). It was her no longer able call a light a light or a bowl a bowl (vocab: agnosia).

It was her no long able to be her. I know that. I do

And here's the thing: For all that I did what was asked of me, for all that I checked and double checked and worded and reworded to drain every last drop of drama from it, for all that I swear up and down before you and God that yes, it sounds crazy, but yes, it did all happen, and finally for all that I only did it so that she might be treated and thus be Grandma, for all that, I ratted her out. Betrayed her. She is livid and bewildered (when she’s not talking about what a great visit we had). Her doctor is, as my dad says, "pretty shaken." Great. Just Great. I would like to speak to a manager please. Surely, there is someone in charge.

And also, can I get directions to the nearest Potter's Field on Mapquest?

But you must understand, I knew her when she was. When she was giving me her wedding dress as my own. When she was giving my biggest boy his first bath because I was bloody terrified of that red wailing wiggler. When she assured me that "twins are a good thing" and "we'll get through it." When she called me at the NICU when Fuzzy was intubated (5 years ago today). When she cooked and cleaned and ironed and yelled at me to "keep nursing and they'll be okay." All of these years before the first shadow and pall of autism—The mother of all “I want my mommy” screams. All this before that. And these, you see, are just the tip of the was's. Just the ones out in front in this one tiny bit of scribble. There are so many--God, how I do wish that had been my task, handling the was's and not the is's. Because then you would laugh and nod and think to yourself, "Oh, Daniel’s Mama’s mama, she was something else, that is for sure."

And she was.


Ceej said...

I'm so sorry. I'm trying to cope on my own dealing with my mother, who is often at varying levels of "out of it", they don't know why. And it's awful. I've been ratting her out to her doctors for awhile. It's awful. I'm so sorry - reconciling was and is *sucks*. You did the right thing and you aren't alone. Hugs.

Sharon said...

Wow. I don't know what to say. Raw... that's how it looks, how it seems that you feel, how you revealed your feelings. It's hard to see our moms fading fast when they were once so strong, so encouraging, so young, so invigorating, so............. But they're not anymore.

Wow. Your description ("Waiting on My Thirty Pieces of Silver) and your mapquest wonder of where is the nearest Potter's Field said it all.

I'm sorry. I'll pray. I wish I could fix it. I wish I could help. Mostly though, I loved that you also included and showed so much of her 'was' that still kind of 'is' even though it isn't anymore.

May God hold both of you tight and show you much love!

MommyLovesStilettos said...

I'm not sure what to say but I want to comment since I read this. I just can't even imagine. I'm so sorry :(

Anonymous said...

I am so sorry. Sorry that you have to live through this, sorry that your kids will never know the wonderful woman that was your mother. You have done the right thing. It may not feel like it right now but you did.

Anonymous said...

God, I'm sorry. My dad was diagnosed with terminal brain cancer this weekend. He won't let me or any of my siblings see him right now--he's too emotional and I think he's afraid of what he's becoming. I don't know what's harder: that, or the fact that he knows exactly what's happening.

Either way, it's awful. It's just motherfucking awful.

Anonymous said...

My mother went into dementia fairly slowly. Sometimes, she was back in time; other times she would make nasty comments to me while we were around other people. I could still love her when she went back in time. It was hard to love her when she was nasty. She's gone now, but to be honest, she died long before her body ever did. At her funeral, she was a stranger; my "mom" had been gone for years.

Anonymous said...

I am so sorry. The woman your mother was is still (and will always be) alive in the parts of you that are shaped by her, those ways of mothering you have that you know, irrevocably, are from her... I'm so sorry she isn't there to see it. And that you have to watch this happen.

Anonymous said...

You did not betray her. Her body and her mind have betrayed her. All you have done is describe symptoms so that she can get the best medical help available. Ignoring it won't make it go away, and I suspect your father is in denial. This is a safety issue --for herself and others around her. Please don't feel like you are a Judas for doing what you had to do. As the mom of a special needs child, you know that sometimes doing what is best is the hardest thing to do. Please give yourself a break and know that this is the best way to take care of your Mom, even though it hurts like heck.

Anonymous said...

Beautifully written. And I'm sorry for all that life has handed you.

Supa Dupa Fresh said...

I'm so sorry. My MIL had dementia when I was her only living family member, when we were both grieving the loss of her son, and it was like hell. I hated being a caregiver to her. It's a cruel disease in some ways.

I wonder if knowing that you are permitted to grieve -- to feel all the full depressing shit of it -- would help you process this little hell.

I'm so sorry that doing the ABSOLUTE right thing was so painful. I am not sure I could have done it, but it needed to be done. How is your Dad doing with it all? I imagine he's in mourning, too.