Tuesday, August 18, 2015

The Banging Narrative

Way back - well probably not way way but it feels way - I wrote about the day Mom moved into the bad faith assisted living place and I thought I had her settled. Sigh. It was a short post that referenced an essay I'd read in which Ann Patchett takes care of her grandmother. I remember the feeling of finally having time to myself and the reading being too close to what I was feeling.  I pulled a longer quote in which Patchett wrote: Could I do this every day for another five months? Absolutely. Another five years? I wasn't entirely sure. 
Never more true. And. Never more meaningless. Ready or not. The day begins. 
I keep banging into this narrative. I watched Still Alice, which was a self inflicted bang. Although it's about early onset Alzheimer's and Mom doesn't have Alzheimer's. Or they don't know but probably not. She has a fairly normal level of Dementia for her age. These are distinctions without difference. Her mind is shredding. Watching the movie was, again, too close. 
And then I read a piece in The Sun about another ageing mother recently. All this and countless stories from friends and family and people I barely know. Bang. Bang. Bang.   
I feel like we so often hear about the ninety year old person who just climbed a mountain, or who is still working, or leaping tall buildings in a single bound. In the last twenty years of Mom's life I've seen so many different story lines. Some inspirational but most exhaustingly difficult. It's not the level of ability or acuity that hits me. It's the chaos in terms of care. 
Jimmy Carter has Cancer. I love him and I want him to get the best care and he will. And I sort of resent it. Because the whole time Mom was so sick I felt time and time again that I was being told she was old and there wasn't much to do. I had to fight for information. And there were things that could be done. I remain hyper vigilant. Every rash, every mood shift, every bodily function. Is there something I need to do? Who can I ask? Who will care?
Mom is 89 and on no meds. She's really very healthy. She's had multiple joint replacements. She uses a walker but she gets exercise most days. She sleeps most of the day and is always tired. She may have something going on that will be the cause of her death but her new GP spends most of the time during appointments shuffling papers and failing on his lap top. I have to keep him focused. 
I'm not concerned with the length of her life. I'm concerned with the quality. She's safe. She eats well. She has focused care and she spends the weekends with me. She has music therapy and will be having physical therapy soon for shoulder pain. She had her teeth cleaned today. 
Sometimes she's just afraid. She doesn't know why. And I can't help. She seems obsessed with what people think of her. Do they like her? Was she always this way and just never let it show? Or is she just lucid enough to see that she's confused. She dreads making choices. She says, I love you over and over and over and I hear - please don't leave me. 
Can I do this for another five months? Another five years? 
People keep telling me what a good daughter I am. Maybe. But I am also filled with self pity and doubt. I never feel like I do enough and I regularly am not doing enough. There is a list of things that need to be done. I am not getting them done. 
This narrative is everywhere. I'm not even sure why. I guess we are living longer. I guess health care is a new industry. I guess there is only so much that can be done. I guess people my age are in this narrative and we are sharing. 
The end of the narrative is ... she's gone. I didn't read ahead. It's just a given. 


Anonymous said...

It is a given. But the alternative is...you would be gone. From what I hear, losing a kid is the most horrible thing. I don't have kids. But if My Dad loves me more than I love him, it would really really devastate him. More than his own death. I don't want that to happen. We never think we can do enough. They bought us shoes. Shared their food. Might have been rich if we did not suck them dry...but they never bring it up. They worry that they are now taking too much of our lives. Not what a parent wants to do, ever. It's tough. Can I do it 20 more years? Reckon I'm gonna find out.

lynnie said...

My dad slept all the time the last years of his life, and his doctors never seemed to think that was a big deal. All they seemed to care were his numbers, not jus quality of life. Taking care of him exhausted my mom. It is hard to worry so much. You can only do what you can do. You are looking out for your mom. You really are a good daughter.

Tish said...

I would like to be hanging out with you guys. Right now.

Kristina Krause said...

I like that, "the banging narrative." That pretty much covers it! Glad you are feeling more alive after all you and your mom have been through so far. She's in a much better place that may not be perfect, but she has better quality of life....and that's because of YOU. We're probably always going to feel we're not doing enough, wondering what else can we do.....especially when it comes to the beings we love and care about.

As for Still Alice, I fell apart watching that movie.....that was a big bang for me that brought back memories of my grandmother, memories of watching her go through the slow decline.

Tish said...

I'm not really feeling more alive. I feel like I'm on the verge of a breakdown. I feel desperate and exhausted. Day after day. It's ... just...I feel just so fucked up.