Not a marathon read today. You're welcome!
After Dad's surprising words Sunday, we called in the nurses and even his primary doc, Dr. Mumtaz. They weren't nearly as impressed. Ah well, I get it; it's not their dad. Plus they need cold hard data to see what's really going on.
Dad received another EEG yesterday, so I expect to hear something later today. In the meantime I've got piles of work on my desk to keep me busy and a fierce cold to brave when I go out for lunch. I've been somewhere mild for a week, so I forgot what 20 degrees feels like.
Again, human contact is what's really getting reactions out of him, so if you're able to make it to Little Rock in the next week, swing by. If not, we'll have him home in Russ Vegas soon enough. Keep on sending those happy vibes- they're reaching all the powers that be, even Santa.
Tuesday, December 29, 2009
Monday, December 28, 2009
While you were Holiday-ing...
...a lot has happened. Reporting on it hasn't been an option because 1) the secure socket layer for Chez Vinny's internet got a little too secure, and I wasn't able to access the site from SSH; 2) the sherwood wilderness that is my parents' property blocks any sort of wireless communication- thanks Pop for planting 1 bajillion trees when we moved in 1988; 3) any time I wasn't at SSH or home I was Mom's chauffeur. Stare at Interstate 40, stare at Dad, stare at Interstate 40. Repeat. Those were my days. I drove from Chicago, and in 8 days I've logged 1500 miles and 32 hours in my car...and I'm not even home yet.
I did draft an entry right before Christmas, so I'll publish that along with today's info. Grab a sandwich, beverage and a blanket- you'll be here a while.
WEDNESDAY, Dec 23: Taking Care Of Business
And working overtime. Work Out.
Today was less filled with Dad and more filled with errands to take care of Dad: dropping forms with his work's HR office (Hi ladies! You were all lovely), grabbing extra copies of documents from our fabulous attorney Susan, getting all the papers in ONE place for Mom, and a very different kind of Christmas shopping. For a skilled nursing facility. Cue the single, pathetic party whistle.
Here's the thing: like I mentioned, Dad's not ready for a fully aggressive rehab facility. SSH won't be able to keep him for much longer, so skilled nursing is the next step. Skilled nursing is considered short-term, but it's longer than anything we've known (90-120 days). It combines less acute nursing care with physical and occupational therapy (where possible). It gives Dad a place to be cared for and worked on while the noggin decides where and when it will show up again. There are facilities all over the state, including some that are much closer to home. The issue? Most of these facilities are housed within nursing homes. My stomach collapsed with the news.
My family knows the nursing home setup quite well- I spent lots of time in them as a kid (funeral homes too, but that's because Grandma took me to work with her...that's a story for another time). Whether we were visiting my 100-yr-old great Granny Sanders or I was singing Christmas carols as entertainment for the 3 pm dinnertime rush, I knew those places inside out. And loathed them. The musty smell, the desperate attempts to cover the gray walls with festive glitter/construction paper cutouts, the shouting of phrases like "Did you take your pill?" loud enough for Aunt Marge to hear. I hated them. At six years old I deduced one thing: this is where people were sent to die. And now, 23 years later, Mom and I had to decide which one would get my father. Merry Freaking Christmas.
To our surprise, both of the facilities we visited were not the doom chambers we remembered. There was no "nursing home smell!" Both Facility A and B were recently remodled/constructed, with modern decor and furnishings, and were remarkably clean. Both accommodated our request for a tour with no appointment and had very friendly guides/RNs to answer our questions. Facility A had wonderfully bright wall colors, and Facility B had a very open floor plan. After a short time in each place, I felt comforted, invited and safe.
What started out as the unthinkable option turned into a rational decision for both of us. Either facility can give him what he needs and keep him in one place, and that place happens to be MUCH closer to home (no more 80 mile, 1.5 hour one-way drives for her). And oh yeah, it won't smell like death. Mom can be there any time day or night, and can be near home/Daisy, eventually go back to work and get as close to back to normal as possible while we give Dad the time he needs. The closeness also makes visiting much easier, and the incredible support system that is their church, colleagues and community will remain intact (and heads-up: once this move happens I'll be relying on all of you to help. Get ready). We drove to Dad today with more optimism/relief than either of us thought possible.
Despite that relief, this holiday is going to be emotionally difficult for us. It's not lost on me that my tiny family has plummeted from 5 to 2.5 in 18 months (for those attempting to do the math, that's an accident/domestic upset every 6 months since last fall). This is only our second Christmas without Grandma, and my first without Teppei. There are moments that I silently panic when I can't find Mom, because I'm terrified I'll lose her too. But we're here. He's here. So we must be grateful for what we have, and have faith in the knowledge and understanding that these experiences can bring.
I'm not exactly sure what our holiday plans entail, except of course the daily drives to the Rock to see Dad and the nightly snuggle sessions with Daisy the dog. Wherever we end up, know that I will be remembering each of you who have called/written/read this site. Your positive energy is my Christmas gift.
May you have a pleasant holiday, however you chose to celebrate. We love you.
-----ok. Here's today's update. SIT DOWN. Trust me.------
SUNDAY, December 27. The House of "Yes"
Greetings from the Days Inn in Mt. Vernon, IL. I'm here because I got a late start home- you'll know why soon.
Mom and I had a relatively unremarkable holiday. The timing of our visits to Dad delayed all our initial plans. We had a just-the-two of us dinner on the Eve, a quick jaunt to her parents on the Morning, and simply did what we do every day. We did bookend the period with 2 visits to see my best friend and adorable baby niece, and the rest of the awesome Sorrells family. Hands down: 3 cutest grandkids in the Valley. It was the one happy, soul-restoring activity in an otherwise less-than-merry time. I'm pretty sure we both just chose not to talk about our situation and just get through the time emotionally intact. Sometimes it's best to say nothing and pretend you don't feel it.
My uncle Johnnie and aunt Valli (Dad's older brother/sis-in-law) drove in from Texas on Saturday to visit. The moment Dad heard Johnnie's voice he went to town: fingers, arms, right eye, mouth. And he didn't stop for hours. It was awesome. That morning, during my periodic lotion rubdown of Dad's feet/legs (for a man's man, he is alarmingly finicky about dry skin and smelling good, so we're keeping that up for him now), as I moved his left leg, he winced in pain. Not in an "excuse me, might you stop that?" way, but a "OW! PUT MY F*&$^NG LEG DOWN, YOU'RE KILLING ME!" way. This may sound weird, but I was thrilled. He's feeling pain in places he hasn't, and he's letting us know.
While Johnnie was playing the hand squeeze game with his brother, Dad started to open his mouth as if to say something. That stunned us- we hadn't seen that yet. We mentioned it to his respiratory therapist that night, and she offered up the option of a speaking valve on his trach tube. It's an attachment with simulated plastic vocal chords. Think less chain-smoker's robotic voice machine, more duck hunting call. In the event Dad would actually attempt to speak/make noise, we'd have a better shot at hearing him. She left the equipment in his room and suggested we try it Sunday.
Right before we left for the night, his sassy nursing assistants came in to turn him (which they do every 2 hours). These ladies are hysterical, giving each other a hard time as they tease the patients in hopes of getting a rise out of them. It's like having Frangela and the Smothers Brothers on the in-house staff. One of them got sassy with Dad, and since he can't sass back he raised his whole arm up to grab her elbow. Oh yeah, he's in there.
This morning we got there with the plan that I'd sit for an hour then go; I had a 10 hour drive home to Chicago. I kept getting delayed. Then Glenn, a high school friend of Dad's called to let us know he was coming to visit- more delay. Dad heard Glenn's voice and immediately responded with his hands (which was a bit shocking: given Dad's big show on Saturday, we were expecting crickets from him the following day). His day resp therapist put the speaking valve on him, more to appease my Mom than anything. The second it was on, Dad's mouth started moving, and we heard jibberish sounds. It was clear he was making an effort.
Then it happened.
Glenn: "Hey old buddy, you're looking good. Are you in pain?"
Dad (almost inaudibly): "Yes."
Mom and I froze. I could not believe it had happened. He spoke. Comprehensibly. I couldn't move a muscle in my body for 30 solid seconds. Nothing ever felt so wonderful or scary in my life. Mom teared up and I started looking for stuff to poke him with (so I could keep him awake and ask him questions). Six weeks ago I didn't think he'd live and now he's telling me he's in pain, most likely because I was shaking his legs in an attempt to rouse him. It was unbelievable.
He didn't respond to much else. His eyes remained closed for most of the afternoon, I think we wore him out with all the party tricks (Watch his fingers while I jiggle his arm- he'll move them!). But I didn't care. It was worth it for that one word. I couldn't leave his side for 3 more hours.
Right before Glenn left, we got one more nugget of hope.
Glenn: "OK buddy, I've got to run. I'm going to go now."
Dad, as he raises his hand to find Glenn's: "OK."
EEEEEEEEEEEEEeeeeeeeeeeeeeeeeeeeeeeeeeeeeee! That's TWO!
Now do you understand why I told you to sit down?
I stuck around for a bit longer, but he was spent. And so were we. I said my goodbyes to Mom and drove as far as I could before crashing in this hotel.
As wonderful as those moments were, they're in no way indicative of the end of this story. There won't be a cinematic moment later this week when he suddenly sits upright, orders a cheeseburger and asks how healthcare reform is going. We are still cognizant of our yearlong, or possibly longer, journey to any sort of normal life for him. But the moments are absolutely a step (albeit a shocking one) in the right direction.
From here the focus is on the selection and move to a skilled nursing facility. The transport won't happen until the new year, but most likely in the first week. Once we know where he's going, details on how and where to visit will of course be posted here. As we've witnessed first hand, human contact is the primary stimulator that he needs. It is imperative that his friends and family surround him, speak to him, hold his hands, and once he can keep his eye(s) open, keep his gaze so he can remember. Keep this in mind- you're going to help us get him back.
I did draft an entry right before Christmas, so I'll publish that along with today's info. Grab a sandwich, beverage and a blanket- you'll be here a while.
WEDNESDAY, Dec 23: Taking Care Of Business
And working overtime. Work Out.
Today was less filled with Dad and more filled with errands to take care of Dad: dropping forms with his work's HR office (Hi ladies! You were all lovely), grabbing extra copies of documents from our fabulous attorney Susan, getting all the papers in ONE place for Mom, and a very different kind of Christmas shopping. For a skilled nursing facility. Cue the single, pathetic party whistle.
Here's the thing: like I mentioned, Dad's not ready for a fully aggressive rehab facility. SSH won't be able to keep him for much longer, so skilled nursing is the next step. Skilled nursing is considered short-term, but it's longer than anything we've known (90-120 days). It combines less acute nursing care with physical and occupational therapy (where possible). It gives Dad a place to be cared for and worked on while the noggin decides where and when it will show up again. There are facilities all over the state, including some that are much closer to home. The issue? Most of these facilities are housed within nursing homes. My stomach collapsed with the news.
My family knows the nursing home setup quite well- I spent lots of time in them as a kid (funeral homes too, but that's because Grandma took me to work with her...that's a story for another time). Whether we were visiting my 100-yr-old great Granny Sanders or I was singing Christmas carols as entertainment for the 3 pm dinnertime rush, I knew those places inside out. And loathed them. The musty smell, the desperate attempts to cover the gray walls with festive glitter/construction paper cutouts, the shouting of phrases like "Did you take your pill?" loud enough for Aunt Marge to hear. I hated them. At six years old I deduced one thing: this is where people were sent to die. And now, 23 years later, Mom and I had to decide which one would get my father. Merry Freaking Christmas.
To our surprise, both of the facilities we visited were not the doom chambers we remembered. There was no "nursing home smell!" Both Facility A and B were recently remodled/constructed, with modern decor and furnishings, and were remarkably clean. Both accommodated our request for a tour with no appointment and had very friendly guides/RNs to answer our questions. Facility A had wonderfully bright wall colors, and Facility B had a very open floor plan. After a short time in each place, I felt comforted, invited and safe.
What started out as the unthinkable option turned into a rational decision for both of us. Either facility can give him what he needs and keep him in one place, and that place happens to be MUCH closer to home (no more 80 mile, 1.5 hour one-way drives for her). And oh yeah, it won't smell like death. Mom can be there any time day or night, and can be near home/Daisy, eventually go back to work and get as close to back to normal as possible while we give Dad the time he needs. The closeness also makes visiting much easier, and the incredible support system that is their church, colleagues and community will remain intact (and heads-up: once this move happens I'll be relying on all of you to help. Get ready). We drove to Dad today with more optimism/relief than either of us thought possible.
Despite that relief, this holiday is going to be emotionally difficult for us. It's not lost on me that my tiny family has plummeted from 5 to 2.5 in 18 months (for those attempting to do the math, that's an accident/domestic upset every 6 months since last fall). This is only our second Christmas without Grandma, and my first without Teppei. There are moments that I silently panic when I can't find Mom, because I'm terrified I'll lose her too. But we're here. He's here. So we must be grateful for what we have, and have faith in the knowledge and understanding that these experiences can bring.
I'm not exactly sure what our holiday plans entail, except of course the daily drives to the Rock to see Dad and the nightly snuggle sessions with Daisy the dog. Wherever we end up, know that I will be remembering each of you who have called/written/read this site. Your positive energy is my Christmas gift.
May you have a pleasant holiday, however you chose to celebrate. We love you.
-----ok. Here's today's update. SIT DOWN. Trust me.------
SUNDAY, December 27. The House of "Yes"
Greetings from the Days Inn in Mt. Vernon, IL. I'm here because I got a late start home- you'll know why soon.
Mom and I had a relatively unremarkable holiday. The timing of our visits to Dad delayed all our initial plans. We had a just-the-two of us dinner on the Eve, a quick jaunt to her parents on the Morning, and simply did what we do every day. We did bookend the period with 2 visits to see my best friend and adorable baby niece, and the rest of the awesome Sorrells family. Hands down: 3 cutest grandkids in the Valley. It was the one happy, soul-restoring activity in an otherwise less-than-merry time. I'm pretty sure we both just chose not to talk about our situation and just get through the time emotionally intact. Sometimes it's best to say nothing and pretend you don't feel it.
My uncle Johnnie and aunt Valli (Dad's older brother/sis-in-law) drove in from Texas on Saturday to visit. The moment Dad heard Johnnie's voice he went to town: fingers, arms, right eye, mouth. And he didn't stop for hours. It was awesome. That morning, during my periodic lotion rubdown of Dad's feet/legs (for a man's man, he is alarmingly finicky about dry skin and smelling good, so we're keeping that up for him now), as I moved his left leg, he winced in pain. Not in an "excuse me, might you stop that?" way, but a "OW! PUT MY F*&$^NG LEG DOWN, YOU'RE KILLING ME!" way. This may sound weird, but I was thrilled. He's feeling pain in places he hasn't, and he's letting us know.
While Johnnie was playing the hand squeeze game with his brother, Dad started to open his mouth as if to say something. That stunned us- we hadn't seen that yet. We mentioned it to his respiratory therapist that night, and she offered up the option of a speaking valve on his trach tube. It's an attachment with simulated plastic vocal chords. Think less chain-smoker's robotic voice machine, more duck hunting call. In the event Dad would actually attempt to speak/make noise, we'd have a better shot at hearing him. She left the equipment in his room and suggested we try it Sunday.
Right before we left for the night, his sassy nursing assistants came in to turn him (which they do every 2 hours). These ladies are hysterical, giving each other a hard time as they tease the patients in hopes of getting a rise out of them. It's like having Frangela and the Smothers Brothers on the in-house staff. One of them got sassy with Dad, and since he can't sass back he raised his whole arm up to grab her elbow. Oh yeah, he's in there.
This morning we got there with the plan that I'd sit for an hour then go; I had a 10 hour drive home to Chicago. I kept getting delayed. Then Glenn, a high school friend of Dad's called to let us know he was coming to visit- more delay. Dad heard Glenn's voice and immediately responded with his hands (which was a bit shocking: given Dad's big show on Saturday, we were expecting crickets from him the following day). His day resp therapist put the speaking valve on him, more to appease my Mom than anything. The second it was on, Dad's mouth started moving, and we heard jibberish sounds. It was clear he was making an effort.
Then it happened.
Glenn: "Hey old buddy, you're looking good. Are you in pain?"
Dad (almost inaudibly): "Yes."
Mom and I froze. I could not believe it had happened. He spoke. Comprehensibly. I couldn't move a muscle in my body for 30 solid seconds. Nothing ever felt so wonderful or scary in my life. Mom teared up and I started looking for stuff to poke him with (so I could keep him awake and ask him questions). Six weeks ago I didn't think he'd live and now he's telling me he's in pain, most likely because I was shaking his legs in an attempt to rouse him. It was unbelievable.
He didn't respond to much else. His eyes remained closed for most of the afternoon, I think we wore him out with all the party tricks (Watch his fingers while I jiggle his arm- he'll move them!). But I didn't care. It was worth it for that one word. I couldn't leave his side for 3 more hours.
Right before Glenn left, we got one more nugget of hope.
Glenn: "OK buddy, I've got to run. I'm going to go now."
Dad, as he raises his hand to find Glenn's: "OK."
EEEEEEEEEEEEEeeeeeeeeeeeeeeeeeeeeeeeeeeeeee! That's TWO!
Now do you understand why I told you to sit down?
I stuck around for a bit longer, but he was spent. And so were we. I said my goodbyes to Mom and drove as far as I could before crashing in this hotel.
As wonderful as those moments were, they're in no way indicative of the end of this story. There won't be a cinematic moment later this week when he suddenly sits upright, orders a cheeseburger and asks how healthcare reform is going. We are still cognizant of our yearlong, or possibly longer, journey to any sort of normal life for him. But the moments are absolutely a step (albeit a shocking one) in the right direction.
From here the focus is on the selection and move to a skilled nursing facility. The transport won't happen until the new year, but most likely in the first week. Once we know where he's going, details on how and where to visit will of course be posted here. As we've witnessed first hand, human contact is the primary stimulator that he needs. It is imperative that his friends and family surround him, speak to him, hold his hands, and once he can keep his eye(s) open, keep his gaze so he can remember. Keep this in mind- you're going to help us get him back.
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