How 'bout an update?

I was scrolling facebook the other day and saw one of those memories feeds that makes your heart stop. It was right about this time four years ago, that we went to the very first specialist in OKC. We had no answers, just lots of questions and lots of unrest.

Four years.

It is completely unfathomable to me how much has changed in those four years. I am constantly running in to people who ask how my mom is and then seemed a little startled with my answer. I have said from the beginning I don't sugarcoat when it comes to this. I won't give the standard, "we're doing ok," answer with a smile. I just can't. This disease is so ridiculously brutal. It is hard. It is crap, but I do find myself settling on it is what it is more often than not.

My mom can longer feed herself, bathe herself, put on her clothes, tie her shoes, form complete thoughts ... but please tell me more about how great she looks and how she knew who you were when she saw you last.

She has lost so much weight we've stopped counting.

She is dying. Let me say it again to be sure that you understand. SHE. IS. DYING.

That is our reality. That is our burden to bear. I don't say it to be mean, I don't say it for sympathy, I say it to help you understand. The odds that my mother will be around when my kid starts first grade - they aren't good.

So often people hear Alzheimer's and dementia and they think of a long drawn out process. Often, that is true...for your grandparents. My mom is 58. I watch so many people come into the bakery, enjoying their grandkids and living in what is probably the prime of their life ... and I grieve for what we've lost. I grieve for what we will never have. My mom is dying. It's a reality we have to live with every single day.

And trust me I get it...people don't know what to do or what to say, so often they do nothing. You know what I'd wish you'd do...show up. Visit her. Sit with her. Give my dad a break (that man deserves more accolades and awards then he will ever get). Stop asking us how she's doing and telling us you really need to come see her, unless of course that is what you have to do to assuage your own guilt.  Because here's the ugly truth ... while she is dying, she's not dead yet. And believe you me I understand being busy. Lord do I? But you know what, not a day goes by whether I've been at work for 14 hours or 9 ... that I don't see my mom. I'm not asking you to come everyday. I'm just suggesting that maybe instead of wondering how she's doing you could know for yourself. You could spare 20 minutes (difficult as they may be) to sit with her while she can still sit. To make her feel like the whole world hasn't forgotten her or abandoned her because her brain sucks.

Well this has certainly taken a turn, but maybe it's been four years in the making. I would say I apologize if this offends you but I don't. This is our reality. I understand that. It's not yours. I understand that too. But you asked how she was ... and I'm just being honest.