Disclaimer: refer to chapter one
NOTE TO READERS: Thanks for the reviews! This chapter is around 8 pages long. I wasn't sure I would be able to get this chapter finished and ready for you this week. I lost my Mom on January 21, one day before my birthday and this has been a very hard week to say the least. So, I hope you'll understand if chapter 4 takes a couple weeks to be posted. My plate is so very full right now but I will keep posting, I promise. I just need some extra time. I hope you all understand. Happy Reading!
So Long, Good-Bye
Chapter Three: Gloaming
"…It's the truth that I don't want to hear. You're hiding regret in your smile. There's a storm in your eyes that's been passing for awhile. Hold on to the past tense tonight. Don't say a word; I'm okay with the quiet…" Lyrics by David Cook, Lies
Rapid City Regional Hospital, Courtyard
Dean was thankful for the cold weather because he had the entire courtyard to himself. He felt numb and not just from the chilly temperature … this was a numbness born from fear and helplessness to help his brother. He sat on a wood bench he had brushed the snow from and stared at the packet of information he'd already read twice. Dr. Finley had spoken to him, Sam and Bobby over two hours ago and had told them of the diagnosis. He read the list of potential problems. Sammy was in the beginnings of phase 2 and there were only 4. Dean lamented over what was to come and knowing that there was no fix for this. Bobby hadn't turned up any solutions and it appeared that the entity had made good on his decree before it was banished and destroyed. This disease would take Sam's days, and eventually his life.
The litany of possible phases and stages of the disease made Dean's eyes burn with unshed tears. His little brother would essentially lose most of if not all of himself before this disease claimed him. Dr. Finley had said Sam may not experience every symptom or complication, but nonetheless it was apparent he was facing an aggressive form of PSP. Dean stared at the paper list again noting that some things had already come to pass. The paper shook slightly as Dean read it yet again:
The Phases/Stages of PSP
Phase 1 - Deterioration of handwriting and difficulty writing. Speech problems, difficulty being understood by others, slurring, etc. Coordination problems leading to unexpected falls and stumbling; change in walking rhythms/patterns. Vision problems; some complain of 'blurred' vision; some try prisms, but examinations by eye Dr. generally will only find normal vision physically. Lethargy, apathy, no desire to do anything; changes in sleep patterns. One thing that bothered Dean was what if Sam experienced a decrease of sound judgment at some point would he then have to override his little brother's thoughts and wishes to make sure his kid brother got the treatment he needed. Dean knew Sam already felt helpless enough he only hoped that he wouldn't have to take Sam's decision making from him, too.
Phase 2 - Problems sitting down or getting up; cannot lower self into chair gently; just 'plops' down. Increased difficulty walking; begins using a cane for balance; will progress to a walker; increased number of falls. Stooped posture because of vision problems; can't see downward easily. Problems opening or closing eyes; some patients get 'dry eye' because their eyes do not close all the way. Difficulty dressing; cannot do buttons or zippers; hands and fingers do not work as they used to. Almost impossible to write anything legibly. Eating problems; coughing and choking; loss of eating etiquette; fills mouth too full; lots of spills; begins wearing a bib to save clothes. Bathroom problems; difficulty voiding/unable to get to bathroom in time; constipation or diarrhea; may need help with personal hygiene. Needs help bathing; may need hand rails/bathing bench, etc. A mobile shower head is a good idea, if possible. Weakness or neglect on one side of body; one side more dominant; ie: drags left or right foot, etc. (Shydragger syndrome) Subject to infections; urinary tract, respiratory tract (pneumonia) etc.
Alien hand; sometimes holds on to things and cannot let go or takes the hand a long time to release. Difficulty concentrating; sometimes seems 'out of it'.
Phase 3 - Some obsessive-compulsive behavior: ie: fingers "pill rolling", hands smoothing out imaginary wrinkles on table, etc. Increased irritability; increased impatience. May become incontinent of urine and bowel. Increased speech problems; often very difficult to understand; cannot articulate proper speech sounds. Increased eating problems; more coughing/choking. Increased cognitive problems; cannot follow stories on TV; cannot read much, due to vision; will watch game shows, some news. In Theater movies are not recommended, as some suffer from 'sensory overload'; loud sounds and many colors, lots of movement on screen make patient 'nervous'. sleeps much of the day, and all night, too. Instances of 'restless leg' syndrome. Limbs and neck may become rigid; may loose ability to support self on legs. Increased falls; some falls may be close to being described as 'seizures'; complete loss of control of arms and legs, with resultant fall. After fall, will sleep for an hour or so; may not always know whether is injured or not; may not 'feel' the injury. Increased coughing and choking; drooling becomes common; often does not close mouth; Infections may be more frequent. Requires much more help in dressing and with all activities of daily living. Does not speak much, but does enjoy seeing friends and relatives, even though patient may not respond much to them. May have pain in arms or legs; non-specific pain for no apparent reason; application of 'heat' rubs may help; Tylenol may also help.
Phase 4 - Unintelligible speech/mumbling; cannot say words; may go days with out saying anything, constant drooling; coughing and choking may become so severe that eating normally is impossible; Dr. may recommend feeding tube, which requires a surgical procedure to install. May have trouble opening mouth, even for meds. Increased incontinence/constipation problems. Loosing interest in daily activities; sleeps most of the time; uncomfortable sitting for any length of time; prefers bed. Cannot support self on legs; 'spaghetti legs'; body rigid, especially neck area. Little eye movement; cannot 'look' at something; slow to focus on things in view. delusions, hallucinations at times; may be disoriented and not know where they are. Pain, but cannot identify the area. Withdrawn, but remains aware of people; cannot move on own; needs extensive help for all activities of daily living. The main causes of death for a PSP patient are infections and breathing problems.
Note: These phases or categories often overlap and are not the same for all patients. Some may have two or three phase 1 problems and one phase 3 problem. Some may never have all of the problems, but most will need extensive help to live out their lives and will need to be made as comfortable as possible for the duration of their illness. It is wise to gain from the patient, specific information as to feeding tubes, restorative therapies, etc. before the disease is well advanced; a living will is a good idea, so that loved ones will know how the patient wishes to be treated, should life threatening acute problems occur. Long term care will probably be needed and plans should be made before the patient becomes unable to participate in the planning.
He finished reading the layperson handout and he angrily wiped at the hot tears cascading down his cheeks. He wanted to go back to Sam's room, but his brother had quietly asked to be left alone for a while and Dean couldn't deny him the request, although he ached to see his brother and to try and comfort him anyway he could. He was Sam's big brother and it angered him that he couldn't fight this for his sibling; he wished desperately that he could take on this burden for his kid brother but it wasn't to be. His finger absently traced the statement toward the end of the paper a living will is a good idea, so that loved ones will know how the patient wishes to be treated, should life threatening acute problems occur. Dr. Finley had said that Dr. Litvan would be arriving tomorrow to counsel them on the disease more thoroughly and Dean simply wanted to pack his brother up in the Impala and hit the open road and leave this nightmare behind them … you can wish in one hand and crap in the other and see which one fills up first, he thought bitterly to himself.
There was no avoiding this and Dean was scared but he drew in a long breath and blew it out. He knew if he was scared his brother was absolutely terrified. He looked at his watch and decided that almost three hours was enough space. He considered calling his Dad but would hold off until they talked to Dr. Litvan, plus he felt as if he were going against Sam's wishes and for the moment it was the one thing he could do for Sam … not bring their Dad into an already stressful situation until Sam was ready. He knew Bobby was taking some time too and he had said he was going to call some more of his contacts in an attempt to find some fix. Dean knew there wouldn't be a fix for this though and that simple truth left him stripped bare. Dean stood up and brushed the remnants of snow off his jeans and turned to go back inside. He needed to see Sam.
A Few Minutes Later, Sam's Room
Dean approached his brother's room and saw his day nurse Mindy leaving. "Everything okay?" He looked at her with concern in his eyes. He saw the curtain was pulled near Sam's door to offer him more privacy.
"Dr. Finley prescribed something for anxiety and to help him get some sleep. He felt Sam was a little overwhelmed and needed some rest. He's sleeping," she assured. Dean nodded.
"Thanks," was his simple answer. "Um, if our uncle comes up here, tell him it's okay to come in, okay?"
"Will do," Mindy assured. "If Sam wakes and needs anything let me know." Dean offered a soft smile and a quick nod and quietly entered his brother's room. He stood there watching his little brother sleep.
"We're gonna get through this Sammy, okay?" he said quietly. "You're not alone," he assured as he swallowed the lump in his throat. He reached down and gently pushed back his brother's long bangs. Sam moved slightly in sleep and settled under his brother's gentle touch. "I'm here little brother."
One Hour Later, Sam's Room
"You've lost your damn mind," Dean barked.
"Dean, a facility…" Sam started.
"No, dammit, we're gonna beat this …"
"Come on Dean wake up," Sam's voice was tight. "Bobby said he can't find anything to fix this."
"Sam," Bobby pushed off the wall he was leaning against. "I won't stop trying." Sam offered soft knowing smile at the older hunter.
"I know but face it Bobby you and I both know that whatever that entity did to me is the real deal … there's no fix. And, Dean you know how this story's gonna end man, we just haven't got to the last page yet."
"No, hell no," Dean blurted. "There's gotta be some treatment and pill or something, we…"
"We aren't going to do anything Dean," Sam's voice cracked. "I'm the one that's going to end up pissing himself; eating through a tube … I won't even be able to bathe myself." Dean looked at his brother and couldn't hide the agonized look.
"Sammy…" Dean couldn't find more words to make it past the lump in his throat. Bobby looked between the two boys he loved as if they were his own.
"Okay, boys here's how it's gonna work," he started and both Sam and Dean shifted eyes at Bobby's strong tone. "Sam we still haven't spoken to this Dr. Litvan yet, so we'll see what she has to say," Bobby held up a hand when he saw Sam about to protest. "Look, she may just have the same information to tell us that these brochures did, but she can answer questions on what we need to do to make this work. I want to see if she can recommend a doctor near my house, so we can take you back to my place. You're not going to some facility Sam."
"Bobby, no," Sam started. "You read the same material I did. Eventually I'm going to need around the clock care; I can't do that to …"
"Sammy, don't talk like that…" Dean turned away and looked out the window.
"Why? It's the truth," Sam stated bluntly. "What? You gonna bathe me, change a diaper?" Dean turned then.
"I've done it before." Sam blew out a breath.
"Yeah, Dean, the last diaper you changed I was two and half and you stopped bathing me when I was six. I'm twenty-two man and I can't let you …"
"Yes, you can. We're family," Dean asserted. "Look it's not going to come to that, alright? We're going to get this done and you're going to be fine."
"Dean, you're not hearing me," Sam's voice cracked then and Dean saw his little brother's eyes well with unshed tears. "I just can't have my older brother doing this, it's humiliating…"
"So, you'd rather a stranger …" Sam cut him off.
"Yes, when it comes to doing some of the stuff that's coming my way, yeah."
"Okay, boys let's not jump from A to Z," Bobby propositioned. "How about we work on A for a bit longer and then try B, okay? Let's just slow this runaway train down a little."
Sam and Dean seemed to understand the request and they both relented giving Bobby a slight nod. Bobby smiled.
The Next Day, Mid-Morning, Sam's Room
"So, when will I need help taking care of myself?" Sam's voice was quiet. He looked at Dr. Litvan. She had arrived earlier in the morning and had been talking to them about PSP and much to Sam, Dean and Bobby's chagrin she hadn't painted a picture any different that the one they had read about.
"Sam, it's hard to say. I've never seen a case of PSP as aggressive as yours nor have any of my colleagues. "As we've touched on already, you may skip some symptoms all together, but you should be prepared for the future," she paused. "Normally, I'd be talking to you about years before the disease claims you and you could make long-term care plans, but your case is different. I can't really say when you'll need the twenty-four hour care that late stage PSP patients require. You're still able to swallow and eat, so as yet you are not experiencing any of the issues that frequently require feeding tubes and as you know by our discussion and the material you've read … that often the cause of death for PSP patients is aspiration pneumonia or some other infection. However, in my experience it is usually aspiration related infections of the lungs."
"But, we can prevent that right?" Dean sounded off. "I mean if he starts having trouble a tube will keep that from happening, right?"
"A feeding tube would solve any issues of him choking while eating, but Dean, this disease isn't kind hearted. Even if we were able to protect him from aspiration there is always the chance of some other infection claiming his life in the end stages and at the end …" Sam spoke up softly again.
"So, at the end I won't be able to communicate at all?"
"We know that PSP patients are aware of a lot and unfortunately the ability to communicate becomes less and less as the disease progresses and you'll become more withdrawn from those around you. However, it is in my experience that even as withdrawn and uncommunicative a PSP patient may be at the end they are aware their loved ones are nearby and are comforted. Sam, I wish I had a solution to help you but the disease is moving quickly."
"What about medications to help?" Bobby spoke up now.
"There has been only very limited successes in improving some symptoms with the use of medications we commonly prescribe for Parkinson's patients but the outcomes have always been limited, and short-lived. I won't be putting Sam on these medications at this stage. We sometimes prescribe some antidepressants but again they have only slightly improved symptoms but have been successful in addressing patient depressions."
"No pills," Sam spoke evenly.
"Sammy, maybe…" Dean's eyes were desperate.
"No, pills," Sam asserted. "You said I may not experience every symptom I read about, so does that mean I might still be able to talk, maybe not have swallowing problems."
"Unfortunately Sam," Dr. Litvan began with sad eyes. "Those symptoms seem to be universal among all PSP patients for the most part."
"When can we take him home?" Bobby asked quickly. Dr. Finley stepped forward.
"I'd be prepared to release him in a couple days provided there are things in place to handle what is coming. I can make some calls to a local physician near your home and start making arrangements in advance."
"No," Sam spoke up. "I'm not going to have them taking care of me. I can still get around with a little help. I'm not a kid."
"Sammy, that's not what he's saying man, he just wants to make sure that if we need some extra help it'll be there."
"If?" Sam gave his brother an incredulous look. "You're kidding yourself Dean. There is no 'if' I need it but when I need it and if you're thinking I'm getting better from this you're lying to yourself. It's time to come back Fantasy Land." Sam's voice was bitter.
Dean stood stock still and his silence spoke volumes to the room but they all knew Dean's last vestige of hope had just evaporated. He took a breath.
"Okay, fine," he started evenly. "We go home we get someone who can help out when it's needed, but only when it gets to the point you don't want us doing it, how about that?"
"Only if you and Bobby agree not to give me any crap when it's time to …"
"To what? Put you in a fucking home?" Dean spat.
"Dean," Bobby's voice was soft as he tried to remind the young hunter they weren't alone in the room. Dean curtailed his tongue.
"You're not going in any home Sam."
"I won't go unless you agree when it gets too advanced, we find a place for me." Dean's face looked agonized.
"Dean," Dr. Litvan began. "Sam's making a very difficult decision but he's right. PSP patients require a lot of care especially toward the end and quite frankly a facility with trained medical professionals may be what is required near the end."
"The end?" Dean knew that PSP was a death sentence and that his brother's version of the disease was progressing quickly but to here it so bluntly made his gut clench.
"How long?" Sam asked as he looked into the doctor's eyes.
"It's hard to say Sam," Dr. Litvan answered. "You're clearly showing signs of phase two symptoms and you may very well show some more before phase three. It's still moving quickly … maybe two or three months, but it could be longer or shorter depending on the disease process, but it is aggressive, Sam. I'm sorry." Sam nodded and dropped his eyes.
Sam looked at his brother and Bobby. "Do you promise?" Dean and Bobby both looked troubled but they nodded to Sam. The young hunter then looked at his physician "Dr. Finley," Sam spoke after a long moment of silence had fallen across the room. "Can you make the calls? I'd like to go back to my uncle's."
Dean reached out and dropped his hand gently on his brother's forearm and offered a comforting squeeze.
"Yeah, doc, we'd like to take him home," Dean's voice was tight with emotion.
"I'll start making calls today," Dr. Finley replied.
The two hunters knew that there was a battle coming and Dean and Bobby felt helpless to save Sam, but they wouldn't stop trying. There has to be a way, right? Both of their minds holding that one sentiment.
To Be Continued
I hope to update again soon, but as I wrote in my "Reader Note" at the start of this chapter. I just lost my Mom this week and frankly I'm surprised I was even able to finish this chapter and get it out to you this weekend. So, please be patient if it takes a couple weeks for chapter 4 to be ready. Thanks again for reading and I hope you're still enjoying the story.