Wednesday, December 7, 2011
“Warning Shot across the Bow”
Please let me take one of these last moments to encourage you and those you love. When dad first came to live with me in early October, we had a lawyer come by the house and draw up dad’s Will, Advanced Directive, and Power of Attorney paperwork. The POA and AD require a Notary stamp, the Will requires two witnesses and a Notary. Thankfully, I was able to get him to sign the POA paperwork a day before we ended up needing it, the day before he went into the hospital for the first time. This, with the HIPPA documents let the doctors talk to me, and let me make decisions according to Dad’s wishes. Otherwise we would have been left at their mercy to do what they wanted to do and not necessarily what Dad wanted. Unfortunately, and herein lies my warning to you. I never got him to sign his will, waiting for a lucid moment AND having two witnesses and a notary on hand(!), the moment never returned… and therefore we are now getting to enter the wonderful world of probate, a long drawn-out process where the Government gets to hold all of Dad’s assets until it decides how many taxes it will retain before letting us have what our father wanted us to share very simply, equally. Oh yeah, and that POA that let me manage his bank account, died with him, so there goes the ability to pay the ever-mounting bills. No matter how young or healthy you think you are, this will not be something you want to deal with when you’re actually staring death in the face. For your family’s sake, settle things now.
Some “Sundowner’s” (i.e. not-so-sweet) Moments
In case you’re interested in some of the more difficult details of the process... here’s one night of frustration that I happened to think to record as we were going through it. (I debated on posting this now, after the outcome we realized,…as it feels so awful to admit I acted this way with him, even if you give me the excuse that it may have been a defense mechanism(?) But I guess I’m thinking that maybe it will help another caregiver out there to prepare for the harsh realities that I pray you never have to endure.)
2:30am- "Blah, Blah, Blah..."
He's still refusing to drink water, but he insists on trying to talk. So I tell him all I can understand is “blah blah blah” unless he wants some water...he refuses, so, every time he talks I just interrupt him with his same gravelly voice saying “blah blah blah”, it quiets him for a few minutes, he may take a couple drinks, but it's not near enough, if I offer more, he just spits it out. So I keep telling him he might as well stop talking because all I can understand is “blah blah blah”. Unfortunately, even that tactic stops working and he just keeps mumbling...... oh well.... just a funny conversation to report. "have to laugh, right?" I've also learned that ignoring him also eventually gets him to quiet down.... hate to have that attitude, but he won't remember my actions of apparent cruelty anyway. Call it survival mode for the caregiver. ;-)
3:45am- "Please Sir..."
I awake to "PLEASE, GIVE ME SOMETHING TO EAT!" and I say, "You don't have to yell, that's what I've been waiting to hear." So, I go around and try to give him water for starters, "No!" Ensure, "No!" I say, "Dad, what do you want?" "Please sir, give me something to eat, this isn't a game, just let me go home and eat my breakfast or dinner." I offer a couple more times, "What do you want?" "Please sir....blah blah blah". As I sit here typing this in the dark, referring to his diaper which I've also checked, he's saying, "Sir, cut this thing offa me.......please sir.......please do some damn thing....." and the mumblings continue....4:05- back to sleep for me....praying this feeding tube today really works....aha! He's snoring! oops, now he's mumbling again.
4:30am- FEEDING!
first meal in about 36 hours! And by meal, I mean I got him to eat a few bites of cereal (sweet grits?), a few sips of Ensure and water and a bite of banana! and by a bite, I mean a quarter of a slice, about a 1/2 inch thick, but it's food in the belly! Yay! I have a little mercy on what I'm sure are aching shoulders and loosen his restraints a little, but I know how tricky he can be, so not too much. I keep looking over there and his hand is straight up at the elbow (the limit) He's trying to stretch the ties...we'll see...
9:00am- sweet moment…
Drs come in to take him down to pull 200ml...about 1/4 quart fluid off his lungs (better than the 700ml (3/4 quart) they pulled off in Arlington!) Just before the doctors came in, I just remembered, I was standing next to him and he appeared to have something in his hands... I think he was threading a fishing hook onto a line. He got a little frustrated with his shaky hands and gave me the hook. ;-)
After he returned, he "ate" a little... actually asked for some orange juice and drank a couple sips! asked me about how I was "General, Sir?" ...in and out of napping, telling me stories about early military days and days right out of high school... fishing -caught a 10 inch bass! Talk about college, and his brother working in a nearby town... snore....mumble...snore... ;-) I'm just happy we're in real history land instead of his scary captivity, wanting to get outta here place. He mumbles, I give him an affectionate look of attention, he gives a sweet shrug, like, "whatta ya gonna do?"... gotta get a job, if you get a job, you gotta have a wife...makes the whoop-de-do sign with his hand. haha! "Anyway, 20 years old.....had to build a house....oh well...." mumble...snore....mumble.... talking about "now the Koreans get into it, and we have to go fight them". Don’t know whose history he’s recounting, but he’s enjoying the conversation, he was actually in the military by the time he was 20. And I think this may be the conversation in which he called me by his sister’s name, Viloris. (She died a few years ago)
2:30am- "Blah, Blah, Blah..."
He's still refusing to drink water, but he insists on trying to talk. So I tell him all I can understand is “blah blah blah” unless he wants some water...he refuses, so, every time he talks I just interrupt him with his same gravelly voice saying “blah blah blah”, it quiets him for a few minutes, he may take a couple drinks, but it's not near enough, if I offer more, he just spits it out. So I keep telling him he might as well stop talking because all I can understand is “blah blah blah”. Unfortunately, even that tactic stops working and he just keeps mumbling...... oh well.... just a funny conversation to report. "have to laugh, right?" I've also learned that ignoring him also eventually gets him to quiet down.... hate to have that attitude, but he won't remember my actions of apparent cruelty anyway. Call it survival mode for the caregiver. ;-)
3:45am- "Please Sir..."
I awake to "PLEASE, GIVE ME SOMETHING TO EAT!" and I say, "You don't have to yell, that's what I've been waiting to hear." So, I go around and try to give him water for starters, "No!" Ensure, "No!" I say, "Dad, what do you want?" "Please sir, give me something to eat, this isn't a game, just let me go home and eat my breakfast or dinner." I offer a couple more times, "What do you want?" "Please sir....blah blah blah". As I sit here typing this in the dark, referring to his diaper which I've also checked, he's saying, "Sir, cut this thing offa me.......please sir.......please do some damn thing....." and the mumblings continue....4:05- back to sleep for me....praying this feeding tube today really works....aha! He's snoring! oops, now he's mumbling again.
4:30am- FEEDING!
first meal in about 36 hours! And by meal, I mean I got him to eat a few bites of cereal (sweet grits?), a few sips of Ensure and water and a bite of banana! and by a bite, I mean a quarter of a slice, about a 1/2 inch thick, but it's food in the belly! Yay! I have a little mercy on what I'm sure are aching shoulders and loosen his restraints a little, but I know how tricky he can be, so not too much. I keep looking over there and his hand is straight up at the elbow (the limit) He's trying to stretch the ties...we'll see...
9:00am- sweet moment…
Drs come in to take him down to pull 200ml...about 1/4 quart fluid off his lungs (better than the 700ml (3/4 quart) they pulled off in Arlington!) Just before the doctors came in, I just remembered, I was standing next to him and he appeared to have something in his hands... I think he was threading a fishing hook onto a line. He got a little frustrated with his shaky hands and gave me the hook. ;-)
After he returned, he "ate" a little... actually asked for some orange juice and drank a couple sips! asked me about how I was "General, Sir?" ...in and out of napping, telling me stories about early military days and days right out of high school... fishing -caught a 10 inch bass! Talk about college, and his brother working in a nearby town... snore....mumble...snore... ;-) I'm just happy we're in real history land instead of his scary captivity, wanting to get outta here place. He mumbles, I give him an affectionate look of attention, he gives a sweet shrug, like, "whatta ya gonna do?"... gotta get a job, if you get a job, you gotta have a wife...makes the whoop-de-do sign with his hand. haha! "Anyway, 20 years old.....had to build a house....oh well...." mumble...snore....mumble.... talking about "now the Koreans get into it, and we have to go fight them". Don’t know whose history he’s recounting, but he’s enjoying the conversation, he was actually in the military by the time he was 20. And I think this may be the conversation in which he called me by his sister’s name, Viloris. (She died a few years ago)
Thoughts of better days...
Tuesday, 12/6
Today would have been Mom & Dad’s 53rd Wedding Anniversary.
(at their lakeside home in GA, mid-60s)
Now granted, they’ve been technically separated/divorced for the last 20-something years, but they still loved each other...they just couldn’t figure out how to work through those little things that kept them from working out the big thing. She has some sweet memories from the last few weeks, as she would rub his feet, or read to him, and he would look at her and smile and tell her how he appreciated her. Or during those scary moments in the hospital when he didn’t think he could trust me, he told her (using his pet-name for her) that “You’re the only one I can trust, Neet!” (her name is Anita). So, as bitter as today is for all of us, flying home without him…I hope that provides her with a little sweet.
(Dinner in Paris, circa 1961?)
Today would have been Mom & Dad’s 53rd Wedding Anniversary.
Now granted, they’ve been technically separated/divorced for the last 20-something years, but they still loved each other...they just couldn’t figure out how to work through those little things that kept them from working out the big thing. She has some sweet memories from the last few weeks, as she would rub his feet, or read to him, and he would look at her and smile and tell her how he appreciated her. Or during those scary moments in the hospital when he didn’t think he could trust me, he told her (using his pet-name for her) that “You’re the only one I can trust, Neet!” (her name is Anita). So, as bitter as today is for all of us, flying home without him…I hope that provides her with a little sweet.
He was just a simple man...
Monday, 12/5
We wake up and go to the funeral home to iron out the final details and payments of the day. Back home for a quick change and return to the cemetery where, anticipating rain, we’d decided to hold the service in a chapel they have on the grounds. So, here we were, minutes before the service looking at a beautiful blue sky, ah well, the best laid plans… right? 
It wasn’t too big a deal, we thought, until the VFW started their service for military honors and we realized they were about to do the 21-gun salute and playing of Taps -outside! 
I felt like such a bozo, running in and out of the chapel, trying to record the service for those who couldn’t be here. Not to mention, those who were there, were given no direction from the funeral director or the VFW fellows of what we were doing, or should expect! I barely got outside in time for the shots and the bugle, then I barely made it back inside to see them folding the flag to present to Mom! At the end of the day, I wish we had just done everything at the graveside, rain or shine, but...I pray he saw our hearts and felt honored anyway! Guess that’s what we get for trying to provide a little pomp and circumstance to a simple guy who wouldn’t have wanted it anyway. ;-) 
another blur of days, more details to arrange, and a little bit of down time...
11/30-12/4
Finally home to sweet arms and faces of love, my Poppy-Dog, and my own bed! Which actually didn’t provide as much rest as you might think, after three weeks in sidebeds, I guess it was just too strange to settle back in. My sweet strong brothers met me with hugs and tears and encouragements of “how strong you’ve been”. I guess since I’d had these last two weeks to brace for the worst, I felt like I was coming home to comfort everyone else when they felt like they’d need to comfort me. I know it will hit me eventually, but right now, I guess I’m just in “git ‘er done” mode. So, we start making arrangements to fly up to Pittsburgh on Friday (per our conversation with the Yuma Mortuary on Tuesday, Dad should be flying up Wednesday night/Thursday morning), we get the rental car situated, start making plans for a Friday afternoon (about 3:00) service. Thursday afternoon, I get a call from Yuma to let me know that Dad will be on the Thursday evening/Friday morning flight, scheduled to arrive in WV about 5:00pm on Friday….uhhh, whoops! So, we had to have a good giggle about Dad almost being late to his own funeral! (And he was always such a punctual guy!) So, re-arrangements were made to fly out Sunday, hold the service on Monday and return on Tuesday. This actually worked out nicely, that we could get an obituary put in the local paper on Sunday and we ended up seeing a couple of Dad’s oldest friends we may not have seen otherwise. We stopped in Morgantown to have lunch at the little pub where my brother’s older son works, enjoy a few minutes with him before heading down the road to arrive in Fairmont, stop by to see Dad’s last living sibling,
our Uncle Jenk (87 years old) and Aunt Freda, visit with them awhile then to our home for the next couple days with long-time family friends Bill and Barb. Between Aunt Freda and Barb, we did NOT go hungry on this trip! ;-)
Finally home to sweet arms and faces of love, my Poppy-Dog, and my own bed! Which actually didn’t provide as much rest as you might think, after three weeks in sidebeds, I guess it was just too strange to settle back in. My sweet strong brothers met me with hugs and tears and encouragements of “how strong you’ve been”. I guess since I’d had these last two weeks to brace for the worst, I felt like I was coming home to comfort everyone else when they felt like they’d need to comfort me. I know it will hit me eventually, but right now, I guess I’m just in “git ‘er done” mode. So, we start making arrangements to fly up to Pittsburgh on Friday (per our conversation with the Yuma Mortuary on Tuesday, Dad should be flying up Wednesday night/Thursday morning), we get the rental car situated, start making plans for a Friday afternoon (about 3:00) service. Thursday afternoon, I get a call from Yuma to let me know that Dad will be on the Thursday evening/Friday morning flight, scheduled to arrive in WV about 5:00pm on Friday….uhhh, whoops! So, we had to have a good giggle about Dad almost being late to his own funeral! (And he was always such a punctual guy!) So, re-arrangements were made to fly out Sunday, hold the service on Monday and return on Tuesday. This actually worked out nicely, that we could get an obituary put in the local paper on Sunday and we ended up seeing a couple of Dad’s oldest friends we may not have seen otherwise. We stopped in Morgantown to have lunch at the little pub where my brother’s older son works, enjoy a few minutes with him before heading down the road to arrive in Fairmont, stop by to see Dad’s last living sibling,
our Uncle Jenk (87 years old) and Aunt Freda, visit with them awhile then to our home for the next couple days with long-time family friends Bill and Barb. Between Aunt Freda and Barb, we did NOT go hungry on this trip! ;-)
A Day with Mom
Tuesday, 11/29
Mom and I sleep in a little, then enjoy our complimentary continental breakfast and hit the ground running. Hotel shuttle to the airport to rent a car for the day, back to the hospital to make sure all the Medicare details are squared away, then to the Yuma Mortuary for one last visit with Dad and to work out all the details of sending him home.
(Darren at Yuma Mortuary really made the process flow smoothly)
Dad was a “pine box” kind of a guy, but I don’t think he would have anticipated that because pine would actually be a special order this day in age, it would end up being more of a hassle and expense than he would want to deal with. So, we got a very simple square box coffin with Air Force blue material and silver handles (we actually liked it better!).
Then off to Mexico! I wanted to show Mom where we’d been the last 12 days, and since I’d made this trek a couple times, I felt confident we could make the drive by ourselves without any trouble. We did and she enjoyed meeting the staff that I’d grown so fond of at the hospital and then I took her to
the little café where I’d eaten on one of my walking excursions through San Luis – a field trip the staff insisted I take to get out of the room and give myself a break from our routine while Dad was in treatment.(I'll post those excursion pics later) Then back across the border for another Arby’s dinner, to bed and up to the airport Wednesday morning to Home Sweet TX Home!
Mom and I sleep in a little, then enjoy our complimentary continental breakfast and hit the ground running. Hotel shuttle to the airport to rent a car for the day, back to the hospital to make sure all the Medicare details are squared away, then to the Yuma Mortuary for one last visit with Dad and to work out all the details of sending him home.
Dad was a “pine box” kind of a guy, but I don’t think he would have anticipated that because pine would actually be a special order this day in age, it would end up being more of a hassle and expense than he would want to deal with. So, we got a very simple square box coffin with Air Force blue material and silver handles (we actually liked it better!).
Then off to Mexico! I wanted to show Mom where we’d been the last 12 days, and since I’d made this trek a couple times, I felt confident we could make the drive by ourselves without any trouble. We did and she enjoyed meeting the staff that I’d grown so fond of at the hospital and then I took her to
Not what I had planned...
Monday, 11/28, 6:30am
After an extremely restful night’s sleep, with superb caregiving by the nurses at the Yuma ICU, Nurse Cindy woke me to let me know that Dad had given up the fight. Having gone through the last three weeks as we had, and since I'd had my tantrum on Friday night, I think I'd already started the grieving process, so everything was very matter of fact. Still feeling a little distant from the whole situation, I'm sure it will hit me eventually, and I will welcome the grief when it finally settles in. But wouldn't you know it, here’s the way my silly brain processed in the moment: “Doggonit, he’d JUST started his vitamins!” But I was relieved that he is finally at peace and that he did hold out long enough for me to get him back onto American soil so the process could move a lot easier…
Mom and my brother from South Carolina were already working on getting flights into Yuma that day. My brother sadly just changed his to arrive DFW the next day and Mom came on out to help with the details of sending Dad home to WV for burial. Frustratingly, flying standby, Mom missed the flight that would have gotten her in at 6:00 that evening, but thankfully she arrived at 10pm and didn’t have to wait for the 1am! In the meantime, I got us checked into a hotel (discount graciously provided by the New Hope Treatment Center!) and used the downtime to relax a little. 
There was an Arby’s at the end of the road and, being that Arby’s was one of Dad’s favorite restaurants when he’d come in for a visit…I just had to go get a Reuben sandwich to share with him one more time. A sweet moment came when, not realizing we were in the flight path of the local military base, a couple fighter jets flew over the Arby’s as I was walking up to it. I just thought to myself, “Ha, Hi Dad!” (In case I haven’t mentioned it before now, Dad was a jet pilot/flight instructor for the Air Force.) It's hard to see in the pic, but there is a jet in that blue expanse over the Arby's! ;-)
Back to the room for a little rest, then out for a little sightseeing. Yuma is such a beautiful corner of the world! FLAT FLAT! (we say TX is flat, but we’ve got nothing on AZ!) With mountains on the edges of the horizon! And palm trees here and there… just such an interesting texture!
I walked about an hour or so through a little corner of the desert, realizing after a while I didn’t have any water, or even a stick of gum to wet my whistle! Made me think of how parched Dad’s mouth had gotten these last few days.
So I get back to the hotel room to get cleaned up before going to get Mom (on her first attempt to arrive) and there was someone flying a little remote control bi-wing plane outside the hotel! (Dad also liked bi-wings and aerobatics). I just thought it was so neat all these little “hellos” he gave me that day…kinda like “Hey Booger, I’m flying free now! It’s okay!”
After an extremely restful night’s sleep, with superb caregiving by the nurses at the Yuma ICU, Nurse Cindy woke me to let me know that Dad had given up the fight. Having gone through the last three weeks as we had, and since I'd had my tantrum on Friday night, I think I'd already started the grieving process, so everything was very matter of fact. Still feeling a little distant from the whole situation, I'm sure it will hit me eventually, and I will welcome the grief when it finally settles in. But wouldn't you know it, here’s the way my silly brain processed in the moment: “Doggonit, he’d JUST started his vitamins!” But I was relieved that he is finally at peace and that he did hold out long enough for me to get him back onto American soil so the process could move a lot easier…
Back to the room for a little rest, then out for a little sightseeing. Yuma is such a beautiful corner of the world! FLAT FLAT! (we say TX is flat, but we’ve got nothing on AZ!) With mountains on the edges of the horizon! And palm trees here and there… just such an interesting texture!
So I get back to the hotel room to get cleaned up before going to get Mom (on her first attempt to arrive) and there was someone flying a little remote control bi-wing plane outside the hotel! (Dad also liked bi-wings and aerobatics). I just thought it was so neat all these little “hellos” he gave me that day…kinda like “Hey Booger, I’m flying free now! It’s okay!”
Sunday, 11/27- Back to Yuma!
This morning, I woke up and started working on breakfast when Doc walked in to say everything was ready/signed off for us to leave, the ambulance should be here around 10 to get us to the border, where an American ambulance would take us on into Yuma. “What time is it now?” “About 9:40.” ACK! Forget breakfast, I need to dress and get the rest of everything packed! So, the transition went as smoothly as it was explained to me,
Loading into the San Luis Ambulance 
Sirens help bypass the mile wait to cross the border! ;-) 
The Border Transition between ambulances 
The Yuma Ambulance
So, we get to the Yuma Regional Medical Center ER where the whole intake process begins again.. I’m getting WAY too accustomed to this process. We get up to a room, finally, and I continue “mother-henning” the nurses through his particular care issues. After settling in a little while, I see this beautiful yellow IV bag come in that looks a lot like the bags I’ve been looking at during the last two weeks in Mexico, and sure enough, I ask and it IS an IV drip of vitamins!! “Multi-vitamin, Potassium Chloride and Thiamin” AHA! I’m so excited that they will continue along this line of “treatment”. Oh, and I asked one of the ER docs about the likelihood of bringing the minerals/treatments we got from Dr. Jim, if Mom can figure out a way to get them out here and the doc doesn’t seem opposed! Saying we could probably get it in through the IVs! I’m cautiously optimistic about the care we’ll be receiving here in Yuma! ;-)
So, we get to the Yuma Regional Medical Center ER where the whole intake process begins again.. I’m getting WAY too accustomed to this process. We get up to a room, finally, and I continue “mother-henning” the nurses through his particular care issues. After settling in a little while, I see this beautiful yellow IV bag come in that looks a lot like the bags I’ve been looking at during the last two weeks in Mexico, and sure enough, I ask and it IS an IV drip of vitamins!! “Multi-vitamin, Potassium Chloride and Thiamin” AHA! I’m so excited that they will continue along this line of “treatment”. Oh, and I asked one of the ER docs about the likelihood of bringing the minerals/treatments we got from Dr. Jim, if Mom can figure out a way to get them out here and the doc doesn’t seem opposed! Saying we could probably get it in through the IVs! I’m cautiously optimistic about the care we’ll be receiving here in Yuma! ;-)
12 Days: a blur
It’s been a few days of mass chaos and confusion so, I apologize that I haven’t had a chance to get you caught up. By the time I posted that last entry (arriving at the clinic), we were actually on day 11 of the 12 day treatment protocol. It hit me so oddly that those 11 days had been such a blur! I just couldn’t believe we were almost finished! So, unfortunately, (or not depending on how much detail you were looking forward to) I will try to summarize the 12 days as they all did pretty much blend together as we experienced much the same routine every day.
Sadly, given the condition Dad was in when we arrived at the clinic, he never really caught on to the amazing good that could be going on in his body. The hallucinations, confusion, ripping out of IVs, and unfortunate sporadic necessary restraining that had begun the week before at the Arlington hospital continued here in Mexico. (I don’t know who felt worse about restraining Dad, me or Dr. Payan. By this point, I’d realized that was our only resort to keeping him getting the good stuff his body needed, I swear Dr. Payan almost cried as we put them on). Many times Dad asked if we could just go home, to which I would reply that we’re basically stuck here in a foreign country with no transportation, no way to get home, and besides, he’s not strong enough yet to make the journey anyway.
This picture is of one of his escape attempts:
If he would just fight with, instead of against us and the process we’re working through, he’d start feeling better and stronger and we could go! In hindsight, I realize through his confusion, that it probably didn’t help to have people around him all speaking a foreign language… even though for the most part, everyone spoke to him in English, there was a lot of chattering in Spanish going on around him, including me in my broken Spanish trying to communicate with the staff. So, his distrust of me would come and go still. He was so cute trying to convince me that we could “just go down and get the car and go!” Sometimes, when he wasn’t liking me at that particular moment, he would say, “just take me home and you can go your way and I’ll go mine!”
Treatments continued every day and he took them like a champ, sometimes complaining that the “oven” was too hot, and maybe not wanting to take ALL the oral vitamins every day, but we got through most of the therapies that we were supposed to. I think the only thing we didn’t get to try was the magnet therapy.
By the end of week one, the doc was finally starting to realize that Dad really wasn’t going to eat like he needed to in order to get the strength back up and finally started preparations for inserting a feeding tube.Long story shorter, we got the tube in on Thanksgiving Day! And we started giving him some Glucerna (the lower sugar version of Ensure). They were also able to give him his vitamins and detox drinks via tube as well, so this was going to work out just fine!
Friday, 11/25
After a couple days of deteriorating mental/physical state, even after putting feeding tube down his nose, Dr. Payan and I start to speak frankly. Dad’s probably not going to fight much longer. I email family/friends to start preparing for the worst and let myself throw a crying tantrum there in the room… pleading with Dad to snap out of it and start working with us.
Saturday, 11/26
Last official day of the protocols. Dr. Payan helps me work through the logistics of staying vs. getting back to US soil. Whereas, he was very open to continuing basic care, we decide that it would probably work best to get back across the border sooner than later, if for no other reason than to get me back into communication with and give family/friends the opportunity to get out here “just in case”. So, I packed our bags and prepare to get us back to the states on Sunday. I scoot my bed up right next to his tonight and hold his hand for a little while. Earlier, he’d been laying on his side and I noted then that as he rested his arm across the bed rail, that it probably wasn’t doing the IV in the crook of his elbow any favors. I tried to move his arm back to a pillow in front of him, but he kept putting it back. So, sure enough, later in the evening, the night nurse came in to give him some medicine and they had to “finish” pulling out the port and search for yet another vein to insert a new port. This one went into the top of the left hand, so… since he’s been leaving the feeding tube alone, I only restrained his right hand after he started messing with the new port. He fell asleep pretty soon thereafter. In the middle of the night, he started getting agitated again, (which he usually did when he needed to use the bathroom) and I started the process of reassuring him that he could go, right there in the bed, (I tried to avoid saying “diaper” so, I would just remind him that he’s on the bedpan and we would clean him up as soon as he was finished. As this has become another one of our routine conversations, it usually only lasts about 20 minutes or so before it clicks and he says “OK! Here it comes!” and I congratulate him and keep checking for completion so I can, as promised, get him cleaned up as soon as possible. Well, for some reason tonight (this morning) it takes about TWO HOURS!!! of his constant chattering “hurry hurry hurry, please please please, help help help” before he finally gave in to the urge. I was SOOO frustrated with him, he would never complete a sentence (We’d been having this same broken conversation for DAYS!) so, I’m constantly trying to decipher what I need to hurry to do, how can I help? Please...what? After we got him cleaned up, he didn’t stop mumbling/groaning as usual and I was so tired of trying to reassure him that we were leaving in just a few short hours, that I finally retreated to the farthest part of the room I could find, put my headphones on as loud as I could and tried to drown him out and sleep for a little while, I could actually still hear him over the music. When I finally awoke an hour or so later, I looked over and realized that I never tied down that left hand, and sure enough, to my despair, he’d pulled out the feeding tube. AAAAUUUUUGGGHHHHH!!!! I cannot even describe my agony for him… not knowing how in the world we would feed him now…well, hopefully once we get into Yuma, they’ll put it back in and we can start over. So much for a quick summary! The process will continue with my own date stamps to describe the coming days…
Sadly, given the condition Dad was in when we arrived at the clinic, he never really caught on to the amazing good that could be going on in his body. The hallucinations, confusion, ripping out of IVs, and unfortunate sporadic necessary restraining that had begun the week before at the Arlington hospital continued here in Mexico. (I don’t know who felt worse about restraining Dad, me or Dr. Payan. By this point, I’d realized that was our only resort to keeping him getting the good stuff his body needed, I swear Dr. Payan almost cried as we put them on). Many times Dad asked if we could just go home, to which I would reply that we’re basically stuck here in a foreign country with no transportation, no way to get home, and besides, he’s not strong enough yet to make the journey anyway.
This picture is of one of his escape attempts:
Treatments continued every day and he took them like a champ, sometimes complaining that the “oven” was too hot, and maybe not wanting to take ALL the oral vitamins every day, but we got through most of the therapies that we were supposed to. I think the only thing we didn’t get to try was the magnet therapy.
Friday, 11/25
After a couple days of deteriorating mental/physical state, even after putting feeding tube down his nose, Dr. Payan and I start to speak frankly. Dad’s probably not going to fight much longer. I email family/friends to start preparing for the worst and let myself throw a crying tantrum there in the room… pleading with Dad to snap out of it and start working with us.
Saturday, 11/26
Last official day of the protocols. Dr. Payan helps me work through the logistics of staying vs. getting back to US soil. Whereas, he was very open to continuing basic care, we decide that it would probably work best to get back across the border sooner than later, if for no other reason than to get me back into communication with and give family/friends the opportunity to get out here “just in case”. So, I packed our bags and prepare to get us back to the states on Sunday. I scoot my bed up right next to his tonight and hold his hand for a little while. Earlier, he’d been laying on his side and I noted then that as he rested his arm across the bed rail, that it probably wasn’t doing the IV in the crook of his elbow any favors. I tried to move his arm back to a pillow in front of him, but he kept putting it back. So, sure enough, later in the evening, the night nurse came in to give him some medicine and they had to “finish” pulling out the port and search for yet another vein to insert a new port. This one went into the top of the left hand, so… since he’s been leaving the feeding tube alone, I only restrained his right hand after he started messing with the new port. He fell asleep pretty soon thereafter. In the middle of the night, he started getting agitated again, (which he usually did when he needed to use the bathroom) and I started the process of reassuring him that he could go, right there in the bed, (I tried to avoid saying “diaper” so, I would just remind him that he’s on the bedpan and we would clean him up as soon as he was finished. As this has become another one of our routine conversations, it usually only lasts about 20 minutes or so before it clicks and he says “OK! Here it comes!” and I congratulate him and keep checking for completion so I can, as promised, get him cleaned up as soon as possible. Well, for some reason tonight (this morning) it takes about TWO HOURS!!! of his constant chattering “hurry hurry hurry, please please please, help help help” before he finally gave in to the urge. I was SOOO frustrated with him, he would never complete a sentence (We’d been having this same broken conversation for DAYS!) so, I’m constantly trying to decipher what I need to hurry to do, how can I help? Please...what? After we got him cleaned up, he didn’t stop mumbling/groaning as usual and I was so tired of trying to reassure him that we were leaving in just a few short hours, that I finally retreated to the farthest part of the room I could find, put my headphones on as loud as I could and tried to drown him out and sleep for a little while, I could actually still hear him over the music. When I finally awoke an hour or so later, I looked over and realized that I never tied down that left hand, and sure enough, to my despair, he’d pulled out the feeding tube. AAAAUUUUUGGGHHHHH!!!! I cannot even describe my agony for him… not knowing how in the world we would feed him now…well, hopefully once we get into Yuma, they’ll put it back in and we can start over. So much for a quick summary! The process will continue with my own date stamps to describe the coming days…
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