Saturday, February 6, 2016

When your day is long, and the night is yours alone

Mom came home from the hospital on January 13th, but we had a lot to do before home could be ready for her. She stayed on the 3rd floor of the hospital for about a week after that pivotal decision to forego chemotherapy and radiation and continued her physical, occupational, and speech therapy while we scrambled to prepare the house. One of my parents' very dear friends is a contractor; he came to the house to evaluate what needed to be done.

It wasn't going to be the massive project we had envisioned, the addition of a first floor complete master suite. Instead it became the most basic, "What do we HAVE to have to get her home and comfortable?" A ramp in the garage to get her into the house, and a quick remodel of the upstairs bathroom so she could use the shower, and then several hours and some excellent friends to help and the storage room in the basement was cleared out and the large king bed from my parents' room upstairs was moved all the way downstairs. We purchased and assembled a twin bed for my dad and reorganized their room to make space for the hospital bed and shower chair, and the contractor friend worked magic to get everything ready.

Meanwhile in the hospital my mom got a roommate. It was actually her second roommate, but the first one didn't stay very long. This was a lady whose age I would put somewhere in the mid-80s, with bright blue eyes and a curly cap of all white hair. I never actually measured (I thought it would be awkward), but I would guess at her straining tallest she might have come up to my armpit. Every time any of the hospital staff came in to check on her she asked if she could go home yet. They were always kind with their "Not yet," and listened patiently to all her questions. I felt both annoyed by and guilty about the roommate, because that meant the several people who came to see or stayed with my mom had half as much space and no privacy, but my mom also had a constant stream of visitors who sat with my mom for hours. The roommate, who I shall call "Jane"(NOT her real name; Jane like Jane Doe, not like any Jane you know) never complained about the noise.

Jane even proved useful. Nurses, orderlies, and med techs would come in at all times of the day and night and ask, "Do you know where you are? Do you know your name? Do you know what day it is?" My mom always knew her name and where she was, but what day is it? Really? If it's summer or Christmas break or anytime I'm not at work or at church, I don't know what day of the week it is. Jane always knew, though, possibly because she constantly had CNN on her TV, or possibly just because she was good at it. So my mom would listen when they asked her to hear the answer, and always hoped they would ask Jane first. Hooray for covert cooperation!

And trust me, the underlying question wasn't what day it was, it was whether she was aware enough and cognizant enough to figure it out. She was. Smart woman, my mother.

Even though she technically didn't have to, my mom still worked hard at her physical and occupational therapy. Speech was a little harder; it wasn't what I would've guessed speech therapy to be at all. I work with a group of psychologists, and the speech therapy was much closer (in some cases, exact copies of) neuropsychological testing we would do on patients with cognition issues. It was incredibly frustrating for my mom. When she told me about it, I got frustrated for her. The first session went something like this:

ST: (speech therapist) You've just gotten home and realized you forgot your keys. What do you do?
MM: (my mom) I get my spare set of keys from where they're hidden in the garage.
ST: You don't have a spare set of keys.
MM: Yes I do.
ST: No, you don't.
MM: Fine, I go and get the spare key my neighbor has.
ST: They don't have a spare key.
MM: Yes, they do!
ST: No they don't.
MM: Yes they do! But fine, I'll call my husband.
ST: You could do that; you could also break a window.
MM: Why on earth would I want to break a window?! I have three sets of spare keys!

I later learned that particular speech therapist was an intern- I also spoke to the head of the speech therapy department and said something to the effect of, "Hey, I know interns need hands on experience or they're never going to learn, and I support that. However, considering my mom's unique position and somewhat limited time, can she NEVER have to go through that again and instead have an actual speech therapist who isn't going to argue with her like a 5 year old?" My wish was granted.

That didn't make speech therapy much easier for her, though; the professionals were kind and patient but I was staggered sometimes at how much they didn't know. Unfair of me, I suppose, since I had been training under a neuropsychologist and it was the speech therapist job to make my mom work for the answers to help reactivate or even reconnect her neural pathways. I wished I could've been there every time to sit next to her and hold her hand and help with everything. This was one example:

ST: (speech therapist, NOT an intern) (Drawing a thick line on a piece of paper with a yellow highlighter) Sara, can you see the yellow line?
MM: (my mom)(pause) Yes.
ST: Okay, trace the yellow line with your finger. Now I'm going to draw the letter "A" in different places on the paper, and I want you to circle them. Okay?
MM: Okay.

My mom starts to circle the letters, but slows after the first few. The speech therapist keeps encouraging her to find the yellow line and use it as a guide. This works the first time, but as the exercise goes on, it becomes harder and harder.

SP: Can you find the yellow line?
MM: (long pause) No.

I'd had enough.

ME: Mom, close your eyes.

She did so with evident relief. The speech therapist glanced at me, surprised, I think.

ME: Mom, take a few deep slow breaths, and think about the color purple. Purple pansies, purple grapes, anything at all that's purple. (to the speech therapist) Interestingly, yellow is the color that is hardest for most people to see, especially bright yellow, and it's the first color their mind blocks out when it's been visible too long. White is the easiest color, but white on white paper isn't helpful. Blue is the next color. (back to my mom) Thinking about purple? (she nods). Great. Open your eyes. (she does) Now find the yellow line.

My mom looked down at the paper and pointed to it immediately. The movement of the speech therapist snapping her mouth closed caught my attention, and I smiled at her reassuringly.

ME: I work with a neuropsychologist.
ST: Oh.

Despite that setback, that speech therapist was my favorite among the three that worked with my mom because she was the most patient and the kindest. And the point of me sharing that story is not I'm so great, it's that sometimes when you're being tested by another human being the failure to communicate is theirs. Cut yourself some slack. Also, as my mom taught me many many many times throughout my life both by example and by gentle encouragement, if the answer you're looking for isn't anywhere you can find, maybe the problem is how you're asking the question. She showed me that when she was working with the Springville World Folkfest. And again when she served in the Stake Young Women's Presidency. And every time she was asked to speak or sing in public. She HATES that. Next only to vomiting, and possibly spiders, being the center of attention was the worst thing in the world for her.

She certainly wasn't losing cognition, though, despite the previous two stories. There was also this interaction:

ST: What do you do if you notice some termite damage on the baseboards in your living room?
MM: Well, when that happened last year we called an exterminator, Buffo's, which reminds me, (turning to my dad, who was also in the room) Mike, put a reminder on your phone to call Buffo's in September to have them come back and do their yearly inspection because if they don't come every year than the warranty on the Pest Control expires, their number is in my contact list. (Back to the therapist) Then once they'd cleaned everything out and taken care of the problem we had to measure the damage to the sheetrock and the baseboards exactly. I had some of the paint left over from when we'd repainted the room so when we did the repairs to the wall I could paint it with an exact match so you could never tell anything happened.
ST: (Long pause)
ME: (Miming a mic drop)

Okay, so I didn't actually do a mic drop at that point, but looking back on it I wish I had. Ah the clarity of hindsight. Speech continued to be her least favorite and mine, but I liked her occupational therapist and I LOVED her physical therapist. His name was (and likely still is) Tyler, and he was never too busy to answer our questions or explain anything in more detail. You could tell he was really passionate about what he did, and that the quality of life he could help his patient's achieve mattered to him on a very personal level. In fact, with the exception of that one intern, everyone seemed to go out of their way to be truly kind, not just nice, and cared about my mom.

Which is easy to do. My mom, being my mom, made sure to always send my dad to the cafeteria or us to the store or from two of my aunts who brought them to have cookies or slices of carrot cake (her favorite) or Lindt chocolates on hand to give to everyone who came in the room for any reason. Checking her blood pressure? Would you like a cookie? Bringing her meds? Please take a slice of cake. Came into the wrong room by accident? Oh, don't worry about it, here, have a chocolate for you and here's one for whoever you meant to go and see. Her number one goal in life was to make people feel loved.

She even touched the hearts of people who barely interacted with her. Because of her condition, her limited time left and the many visitors, my aunt asked if there was any way we could get her put into a private room again. The clinical lead, who had maybe interacted with my mom twice, worked for hours to try and figure out a way. He looked at other floors and other configurations of patients, but after a full day of doing everything he could think of the hospital was just too full.

Looking dejected he came to tell us about his failure. She was asleep at the time, so he talked to my dad and I and explained everything he'd tried to do to get her a private room. I thought he might be nervous that we'd be upset about it, and trying to justify himself. But when I reassured him that we were fine, it was only for a few more days, and thanked him for all his effort, he clenched his jaw and his eyes were wet.

"It isn't fair," he said. He'd told me in an earlier conversation that he'd been a nurse for a while before being promoted to clinical lead, but he missed working directly with patients. "Your family is so kind, and supportive. I've never seen a family be more supportive and positive, and knowing what you're going through and what she has..." his voice trailed off and I could visibly see him trying to keep it together. I patted his shoulder told him it was going to be all right.

This was apparently the wrong move. "But we're physical therapy," he protested, and the water in his eyes rolled down his cheeks. "People are supposed to get better here and then go home. Not this."

I hugged him. I knew exactly how he felt. I'd been having unvoiced variations of that same protest for more than a month now, ever since Thanksgiving when she'd first started to show symptoms, but really since June when she broke her back. She was supposed to not get hurt anymore, she'd had enough. Not this. Or August, in the car wreck that totaled their van. Hasn't she been through enough? She already hates driving and she loved that van. Not this. When they did the MRI in November and found lesions in her brain I was desperate and focused on every other possible condition or conglomeration of conditions to explain them. Not this. Then the blessings she'd received which pointed us toward hope. Not this.

But there was a crying clinic lead in my mom's room, who'd had much less time to prepare for a sweet, kind, terminal patient and her supportive family. From what the other staff had mentioned and inferences I'd made, it seemed acute rehab patients were usually pretty cranky. "Anytime you need to talk, you know where my office is," the clinic lead offered, stepping back.

Knowing that I was leaving for the airport in less than a half hour and my mom would be home in two days, I didn't think I'd ever have the chance to talk to him again, but rather than reject such a heartfelt offer I just thanked him and let him get back to work.

I lingered so long at the hospital I very nearly missed my flight home. I ran across the B terminal of the Salt Lake airport in full panic, and was the last to get on the plane. Thankfully they had a seat for me and hadn't shut the doors yet. I flew out of Utah knowing it was my last time going to the hospital for my mom, and she'd be home before I came back again. At least I also knew home was ready for her.