a different kind of care

I drove up to Oklahoma Thursday to be with Mom during her swallow test, but she was taken in early. When I arrived at 10:05, she was already back in the van, ready to be taken to the nursing home again.

Since I didn't want to just turn around and drive back 2 1/2 hours through traffic and flat, flat land, I spent most of the day at local coffeehouse. I fiddled around online, did some editing and writing. It was a lovely break; a calm, normal day which has started to look really good.

Then I got a call from the company which owns the nursing home on my way back to Dallas. 

Kim, the administrator, asked for permission to evaluate Mom for hospice. I said sure, thinking they'd do it later Friday. She was evaluated and approved before my drive was finished. So as of Friday, April 17th, Mom transitioned to hospice care.

According to Kim and our call, there are two sorts of hospice. The first results from a single disease, and a life expectancy timeline (such a civilized phrase!) of 6 months is given. The second, the person has a list of diseases (all of which could justify being on hospice), but there's no range of expectation. With the second, most either pass in a few days or live longer than the six months. 

Either way, after the paperwork was signed, she's on hospice for as long as she lives. 

I clung to shock for as long as I could that night, as driving through construction on a major interstate and dry heave crying aren't a good look. It didn't last long enough.

Due to the difference between state laws, I had to get an updated POA to have on file; without it, the DNRs I signed the week before would be void. And since the law requires Mom sign her own POA, we needed to get it done sooner rather than later.

A friend with an uncanny ability to find things located a form online for almost free. So I got up, dressed, and went down to the local FedEx office. What was a 16 page document hacked down to 10 since Mom (thankfully) lives a relatively small, quiet life.

Stopped in at Starbucks on the way out of town, I then gassed up, and drove from Dallas straight to the nursing home. Mom was awake and signed the form, despite her pretty fingers trembling and forgetting to sign her first name first.

While she struggled, I used my recently developed Mommy tone with her, asking she wait. I turned the paper on an angle to match her partial signature, but it didn't help overly much. Her once light, loopy signature hunkered on the paper like a jagged mountain range.

Kay, the nurse from hospice, stepped into Mom's room a few minutes after 2. My voice growled just this side of civil at her soft greeting, which distracted Mom, leaving her staring off blankly at the wall near her bed.

I asked if I could find her in a few minutes, that we needed to get the POA signed and turned in for records. She smiled, nodded, and I finished fighting for a few more letters.

Wandering to the front desk, I asked after two witnesses to sign the form, and where Kay might be. An older gentleman signed as a witness my signature looks nothing like my mother's, and Kay appeared to sign as the second.

We sat at a table to work through a stack of paper. The DNRs lay on the top of the pile, followed by forms outlining all the tests, possible diagnoses, all Mom's known medical history for the last three years. Professional and kind, Kay shared her dad has Alzheimer's. I smiled wryly, and said it would be helpful if that had been Mom's diagnosis, too.

We spent two hours talking about what had been taken, what had returned, what might slip away. Kay was shocked as we went through all the ways WMD looks like something so familiar - a stroke, Alzheimer's, , but just isn't.

She shared, too, the qualifiers for hospice changed recently, too. Hospice no longer implies a death knell the way it has in the past; now, the focus tends more towards pain management and specialized care. There's a great, small comfort in that, as I internalized it Mom doesn't have an expiration date.

After we talked, I walked Kay to Mom's room. I introduced them, and explained to Mom she wasn't expected to die soon.  She looked relieved, and exhaled. I left Kay taking Mom's vitals, talking to her in that soothingly capable voice.

Lots of Things Happened Since Thursday

The nursing home called Thursday of last week to say my mom gurgled, so could I come up pick her up and take her to the hospital?

Seriously. Gurgled. What in the world does that mean?!

Also, I'm living in Dallas - 2 1/2 hours away one way, if there's no traffic - not really close enough to pick my mom up if she needs to go the hospital quickly. When I mentioned that to the nursing home, the response "Oh.. so we need to call an ambulance. Hm. Ok..." didn't give me warm fuzzies.

I asked if I should drive up and was told to check with the ER after she was checked out. I probably didn't need to, if she wasn't admitted, the voice on the phone said.

Ok, not weird and freaking out. Yeah, that's a lie. I was completely baffled and unsettled. Just in case, I called, left my contact info with the ER so they can call when she arrived. 

Two hours later, Mom's admitted for pneumonia, dehydration, and malnutrition, and Benny and I are about to drive up to the hospital.

7 hours later, after driving across Dallas twice, picking up Benny, gassing up the car and stopping for dinner, we made it to Oklahoma safe and checked on Mom. The nurse on the floor thought she'd be in the Chickasaw Medical Center for 3-4 days, depending on how she responds to treatment. I was so very thankful my brother was there. 

Dead tired, we asked and, because of Mom's extended stay and the distance we drove, we were allowed to stay at the Chikasha House for free.


Most of the Friday, Benny and I sat in Mom's room while nurses came in, suctioning foamy, yellow-ish fluids from her lungs. I remember as I glanced at the container and hours passed, it reminded me of the layers of an aberrant lemon chiffon pie. Weird the thoughts that pop into your head when desperate to not feel the weight of mortality closing in.

The nurses also monitored what they'd classified as an recently discovered open wound as well. Doped up on antibiotics, cough syrup, painkillers, Mom could finally sleep for the first time she arriving at the ER Thursday.

Saturday morning, Benny and I returned to the hospital. The doctor on staff, Dr. Hucks, suggested a PIC line be administered for Mom so she could be less poked and prodded to receive her 5 antibiotics or to have blood drawn. It was supposed to be a relatively simple surgical procedure, taking about 20 minutes while she was sedated. Because most of her arteries and veins are shot, vary from wide to narrow and back again - even when most bodies' don't, the procedure took 1 1/2 hours.

A tube inserted down her throat came about as she'd choked on her morning eggs. She was placed on a diet of Ensure, which seemed cruel when my brother and I received biscuits and gravy on our guest trays.

Mom's color was much better Saturday, and she could actually articulate "yes" and "no" when asked questions or preferences. She was definitely improving!

About half an hour later, Dr. Hucks came in. He said with the type of pneumonia Mom had, her stay would be 5-7 days; also, a speech therapist would visit her Monday. I remember thinking that would make me laugh any other time - Mom having any issue expressing herself. HA.

But then, this person is more my mother's ghost. 

He was also concerned after this stay she might not be able to swallow, due to an especially mean white mass disease flare. They tried to keep her from aspirating and get nutrition, so a tube allows her to intake Ensure. Trippiest thing in the world, to watch someone beerbong your mom a chocolate nutritional shake. Through her nose.

We received good news: Hucks doesn't think she needs hospice care within the next 6 months, whether she can swallow or not. Funny how small things like that matter so much.

As of 10:30 Saturday night, Mom was admitted to the ICU. The nurse, who called just after 11:30, recommended we let her try to sleep. Ben and I went to see her as the ICU doctor made their rounds at 7 AM Sunday morning. 

I was really hoping to take Benny to attend at a nearby church with its extraordinary stained glass and flying buttresses. We encountered the divine in a much different space that morning,

The ICU doctor caught me when I walked in a few minutes before 7 AM. She recommended a DNR (which really should happen after coffee; just sayin'). Mom's weak enough CPR would break all of her ribs, and anything she swallows flows into her lungs to sit there until it chokes her. Aspirating, they call it; that's why they moved her to ICU last night. Her oxygen intake, which usually runs about 100%, dropped below 70%, too. It took about an hour to stabilize her enough to justify the nurse stepping away to call me.

Since being moved to ICU last night, Mom has continued to improve, though. Dr. Hucks said if she continues to improve, she can be moved back to Acute Care tomorrow.

Sunday night was a rough night. Benny couldn't sleep, and then storms moved in. Monday morning, we slept through the alarm, then scurried into the hospital. We look like drowned grease monkeys, while the cardiologist taking pictures of mom's heart looked dry and fresh as a daisy.

Dr. Hucks mentioned the swallow test had been performed Friday, and stated Mom had no swallowing function. I said she had taken meds orally yesterday, so (according to the nurse who administered them) she can take at least swallow something as thin/thick as nectar. They planned another swallow test for later Monday.

I woke Mom up before Benny and I headed back to Dallas. He had work the next day, and I was his only ride. For a 5 hour trip. But I could pick up some more of my clothes from my friend's place, which was needed as Mom wasn't set to be released until Friday.

She seemed more present when we saw her, but wasn't. She didn't remember where she was, and even after she was told repeatedly, couldn't remember the name of the hospital. She still recognized and named Benny and me.

It rained as we left Oklahoma, but eventually some sun broke through during the long drive.

I made it back to Oklahoma Monday night just before 9, having dropped off my brother back at his apartment, and gotten some more of my stuff on my way back up. He bought me gas and Whataburger. He's a really cool brother.

The best news, though, was I got a call on the way back Mom's been moved to Acute Care. No more ICU! Because it was late, I'd get more information from her doctor Tuesday.

Yesterday, Dr. Hucks said they have a swallow test scheduled. If she can still swallow, they won't have to put her on a feeding tube. Also if she continues to improve, she might be released in the next few days; possibly even the same day.

An hour later, she was released. The swallow test was rescheduled for Thursday at another hospital, to see if she can swallow and what consistencies, but the pneumonia is gone and she's been cleared to go back to the nursing home.

And we all do a little dance. 

Because that was a heck of a week. And it's only Tuesday.

White Mass Disease

White Mass Disease is a neurological disorder, where blood cannot (or for some reason does not) travel to the end of an individual's neurons. These organic-jellyfish looking cells use tendrils to communicate, brushing along the little finger edges to preserve memories and facets of personality. Neurons tell how spicy that pepper is, so eyes water or tongue tastes soap. Or do not.

They also control all the muscle memory for the body. The jellyfish in the brain tell the throat how to swallow, the facial muscles not to droop, the eyes when the person seen is loved.

White Mass is not well known, and presents like a series of tiny strokes. And Alzheimer's. And dementia. But only the worst aspects of all, as sometimes, some things can come back. And what is taken varies on a daily, sometimes hourly basis, as if the memory floats in some dark ocean, seeking to be rediscovered.

So far, in three years, my mom has lost the ability to walk, stand, sit, chew, remember the day, time,  how to read, write, sign her name, the joy of peppers, the taste of food to WMD.

But there is the small, tender hope she may remember again.