Friday, May 01, 2015

Brain in black hole

All the segments of my brain have scrambled and flattened into one massive goal, survival. My brain has flat-lined ... and I am functioning on some memory of what normality use to be.

This morning I have taken off work and making phone calls to HMO's, Medicaid, Medicare (I am on hold as I type) ... trying to figure out what will happen to my mom once they have deemed she is able to leave her present acute care facility and go - heaven knows where? Home? My list is growing of how I can care for her here ... including hospital bed, oxygen, tanks, airvo2, commode chair, wheelchair, among others items.

They insist she will be leaving Kindred Acute care in two weeks and I am dubious. Then there is a home assisted care living which her insurance does not cover, or nursing home which Medicaid may or may not cover. I just finished that application.

So I am in this holding pattern of not really sure what the future holds for us, her, me ... She is understandably depressed. We watch TV, hold hands and clean her bed and organized her stuff beside her bed daily. She declines in health everyday and I am sure this is the Universes' way of accepting a merciful death with relief and gratitude.

I go to work and try to be creative while making desperate calls to Kindred to try and get the doctor to address the thrush in her mouth, or the respiratory to address her air needs, to nutrition to address the "mush" she is NOT eating that is her dysphagia diet. She is not eating and losing more weight. I take her Ensure and ice cream. If YOU have a loved one in a hospital or nursing facility, you have to be their advocate ... from one nursing shift to another, it seems no one knows what is going on, what her meds are, how to change the nasal cannula to a mask, etc. I always start off with, "I don't mean to be bossy, but I have been watching you guys do this for over two months ... "

Virginia Mason was desperate to move mom, two months, too long to be there. They were taking an X-ray a day ... I am sure there was no improvement, but they thought it was okay to move her. I have asked for those X-rays. Below, our home away from home at Virginia Mason ... I could hear the nurses say daily, "is she still here?"

When I bring laundry home the dogs go crazy, smelling and even diving into the basket, thinking maybe mom is hiding in there somewhere.

I am still trying to work. Just finished Premier Chefs Dinner invite and catalog ... a floral, vintage paper poster. I really love it. No matter how much I love these projects, it is so good to finally get it to the printer.

And then I had a Vaginal Microbiome illustration yesterday, yes, that is what I said. And a sinus illustration this week as well. The fact is, I love my job and what I do there! ;)

I want to clean the bathroom, or pull weeds or photograph flowers ... normal. But I will hang on to those wishes for now. As I make my way through the black hole of our long term care medical system.


s'mee said...

You have my empathy. I remember these days with my dad, the frustrations, the apathy of health care workers, the concern, the worry, it's all just too much some days.

Your mother, you, and yes, even that whole medical team of hers are in my prayers.

Please take care of your self as you care for her, and know that you are not in this completely alone. Hugs and much love, penni

Erin Wilson said...

I shudder to think what happens to folks like your Mom who don't have such a strong advocate working tireless on their behalf.

You love beautifully, Kim. It's in these hard places that love really shines. As Penni said...I hope you can find space to share a little of that love with yourself too.

Much love + patience to you both...

waltraut said...

Dear Kim, I am thinking of you and your mom, you both are wonderful women. And I am thinking of all those years I have been knowing you from far away and admiring what you have got done even in less than easy times. Love Waltraut

Anonymous said...

Kim, so sad to read this but glad I know what is happening. I completely understand about the system having gone through it for 6 years with Ted. And, yes, you have to fight for everything which is frustrating and emotionally draining. You will look back on this time and realize that it may be your finest hour and be happy that you were able to do it. You and Diane are in my thoughts and prayers. Love you both. Ruth

kim said...

I've been checking back every couple days- thinking about you and hoping things have not gotten too overwhelming. We've done this too, so I know how draining it is, but you do it because that is what you have to do. Love and hugs from Tacoma. ~(other)kim

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