Not Alone

 what IF i told you I was doing 

this to prove a                             POINT?

This is how life feels with Mom some days. No structure. No rhythm. No explanation.

We brought Mom to live with us for her safety. We brought Mom to live with us because I wanted her to thrive. But this is a journey in which success cannot be measured. It's two steps forward and eight steps back. Is she thriving? Who knows. This, this thing, whatever it is that is eating away at her brain day after day is nothing like caring for someone recovering from surgery. It's nothing like caring for someone whose time is predictably short. This thing is a devil. This thing gives her something one minute and takes it away the next. This thing takes a break from time to time and is relentless for days on end. And though I talk about my feelings or my struggles, this is not about me. This is not for pity or for encouragement so much as it is to encourage. I began this blog with the intent to be honest about the things going on in my life, to lift others up through sharing difficulties and victories. That is what I aim to do, because when it comes to doing difficult things, caring for a loved one -- particularly a loved one with cognitive issues -- ranks right up there with herding cats. It's not at all easy and most days it doesn't make sense. It's hard and I want you to know that. If you are a caregiver reading this, please know you are not alone. If you are reading and you know one of these caregivers, please pass this on that they might know they are not alone. 

People ask sometimes, "Can she ___?" And there is rarely a "yes" or "no." Everything is subject to change. Can she walk? Yes, although some days she is much less steady on her feet and I have to watch her constantly. Can she talk? Well, that depends on your definition of talking. As I am writing this, she is talking, pretty well, in fact. And she's pointing and wanting to know what things are. So I'm jumping up after about every fifth word I type to determine the item she is pointing to and explain it to her. By the time I reach the end of the paragraph, she could fall silent or she could burst into tears. Most days she whistles, trills, hums, or even, spits all day long. She reads. Sometimes. And by "reads," I mean she sounds out words or identifies letters. Some days she asks if I'd like help with something; by the time I set her up with stirring or folding something, the clarity is gone and she dissolves into frustrated tears. Sometimes she fights with me about washing her hands or going into another room. I let her. As a matter of fact, I think sometimes I antagonize her just to hear her talk (When she's angry she talks best.) and just to see some fire in her eyes. She doesn't know my name most of the time; every once in a while, she tries to figure it out. Two weeks ago, she was asking for her car everyday. She hasn't had that in almost ten years, but I was impressed she remembered. By dinnertime that same day, I found her sitting fully clothed on the closed toilet in the dark bathroom. We call her Helen most days. She has forgotten she was "Nana," the grandmother, or "Mom," the mother, but Helen is a name she has known all her life and she still responds to it.

I can't begin to imagine what any of this feels like for her. Sounds she can't explain, smells she doesn't recognize, faces she has to learn over and over again, and tasks we take for granted which she simply cannot do. The staccato of uncertainty drowns out reason and remembrance in such a ruthless and unpredictable manner. She is sometimes here, and I think those moments must be the worst for her: knowing she is someone, but not knowing who that someone is. She has forgotten most of her history; some days I'm not certain she wakes up knowing this is where she is supposed to be and we are not strangers. It is sad, and I'm not sure how to say I'm trusting God on this one without sounding trite; but when it comes to empathizing with Mom, I am. Trying to imagine what she's experiencing is important, it helps me to properly care for her; but, spending a whole mess of time there can be as overwhelming and frightening as it is for her. That's not going to do either of us a bit of good.

And as for what I'm going through or as to how erratic and fragmented this season of life can be, I am not alone. And neither are you.