Popsicle and I (My Dad's SCI)

There’s been some interest, due to my accidental hi-jacking of **Umkay’s **“Ask The Girl in the Wheelchair” thread, about my Dad’s situation since he broke his neck last October. A few posters asked that I start a thread, and initially, I thought “No!” Not because I don’t want to share, just because I’m busy enough as it is. And I’m not on the Dope that much anymore, and even when I was, I was mostly a lurker. And, because I just don’t want to dwell. And because it would take days just to summarize the last 7 months.

There is no TL:DR version, so if you’re in, grab a beer.

I did decide to write about all of this because I realized that I really never talk about all this. Not much anyway, except for with my brother. It’s the life I chose, taking care of Pops, so I need to deal.

So, I’ve decided I will talk about it here. In part because some of you have asked me to (and thanks for that), and in part because I probably ought to talk about it somewhere. They say you shouldn’t keep it all inside, right? This thread won’t be all about the Popsicle, though. What I need to talk about is how it’s affected me, selfish as that sounds, even as I type it. My boss and my lawyer have both suggested I “see someone,” just in the last week. Maybe I should. Or maybe, I’ll just type. All that being said, nowadays, his life and my life are intrinsically mixed anyway, so I suppose it will still be about him.

I guess I should give you the background, the details, and my current frustrations. Ask whatever you like, I can’t imagine there’s a question I won’t answer. However, I’m generally only here late at night. So I may not get to this thread more than once a day. I’ll try to step it up though, since I’m starting the thread and all, and it may just be very therapeutic for me.

So. . . .

On October 29th., my Dad fell out of his truck.

I got the call from my kid brother. “Dad’s in critical condition at University Hospital in El Paso and that’s all I know.” I was napping. No ‘Hello’ or anything. And my reply, as far as I remember, was “OK. I can go. . . . (thinking for a couple secs) . . .now.” He said he’d call if he heard more. I packed a bag.
I was in Las Vegas—living the dream. My brother was (still is) in Phoenix. So I was a 12 hour drive and he was 6. My Mom, Dad’s Ex-Wife, was 3 hours away from El Paso. Mom and Dad have been divorced for 16 or 17 years, but they are still friendly enough, and they lived in the same town in southern New Mexico. So, when Dad got hurt, us kids were in other states, so he told EMS to call Mom. He was flown out, probably before Mom even got the message, and he was unconscious by the time he got to El Paso. So he was admitted as a John Doe. So, from Phoenix and Vegas, my brother and I couldn’t initially get any information—except there was a 70 year old John Doe at University Hospital in El Paso, who was alive. So, I gassed up and drove all night. So did my brother. He beat me there, but for the record, he didn’t beat me by 6 hours :slight_smile:

At Kingman, the hundred-or-so-mile mark south of Vegas, I heard it was some sort of head injury. That was absolutely incorrect, but the first indication I had that it wasn’t a stroke or a heart attack or an aneurysm. Would that it would have been, huh? Not that those things aren’t serious, but at least they’re things I have some understanding of. Anyway, at the time it seemed like good news. Somewhere south of Wikiup, I got a text that he might not survive the night – not in those words, but the implication was there. That was the first I heard of breathing issues. How do you have breathing problems from a head injury? East of Tucson, but West of Lordsburg—still 3+ hours out—I heard he was still critical, not breathing on his own and that it was a neck injury. Not that I hadn’t been pretty scared for him already, but something about “neck” – it wasn’t even “spine” – I don’t know, changed something for me. I knew I’d move back to NM at that point, if he should happen to make it through the night. I had NO IDEA how bad it would turn out to be, but somehow I knew, somewhere near the Arizona-New Mexico border that early morning, that not just his life had changed.

I finally made it to epasocitybytheriogrande around 8 or 9 AM. My brother met me in the hospital parking lot, I was looking for socks. I’d left a relatively warm Las Vegas wearing flip flops, arrived in a very windy and cold EP, and I wanted socks to go in my shoes. I’m not sure why I remember that so well.
My brother said words like ‘intubated’ and ‘quadriplegic’ and I’d been driving for 12 hours and was starving. Surreal, even now. That was the first time I heard what happened. He fell, out of the back of his truck, and landed on his neck, on concrete. Ended up being C4-C5, but at the time that wasn’t clear. There were T’s and L’s mentioned as well.

My brother led me upstairs. Dad was awake, off and on, and way calmer than I would have been. They may have been drugs. His head and neck were immobilized by some pretty scary looking equipment. Tubes in his mouth, tubes up his nose, wires everywhere. I think I mentioned in Umkay’s thread that he’s blind in one eye and deaf in the other ear. So if we talked to him on his hearing side he’d naturally try to turn his head so he could see us. And vicey versey. But he couldn’t turn his head much, and he wasn’t supposed to at all. And he kept trying to talk, but we couldn’t understand, what with all the crap in his mouth. So frustrating for us, I can’t even imagine how maddening it must have been for him.
My brother, my Mom and I moved into a hotel room near the hospital. My Dad’s sister showed up, but slept in her car. The Doctors told us what they could, but there was so much swelling of the spine, they weren’t sure about much, except that he needed to breathe. So we all spent a lot of time cajoling the poor guy, bugging him, yelling at him, to just breathe.

By day 3 my mother and my aunt were both “claiming” him, bickering (literally) over his semi-conscious body about things that happened 30 and 40 years ago. So my brother stepped in. He told them both that they had no say in what happens to Dad—that he and I would take care of it. And that if they couldn’t get along they had better not -get-along somewhere else, or he’d remove them or have them removed, from the premises. That was a hell of a conversation, but it was absolutely necessary. These two women, who claim to love each other, but really resent each other, and who both love Dad in their way, would have made this so much worse had my brother not put them in their respective places that early on. About the same time, I told my brother that I could move home to NM if necessary. So it was decided. At that point, it was just up to Dad, to learn how to breathe again.

And he did.

He had surgery, to fix the vertebrae, and take the pressure off his spine. He got through that OK, and was even extubated within a few days, and slated for transfer to Rehab in NM.
So, I went back to Vegas, put in notice at a great job that I loved, packed up my shit and was in Las Cruces, NM, by Thanksgiving. Without a home. Without a job. And with 3 cats.

Now, I had lived in Las Cruces off and on from 1991 to 2005. I like the place, hell, I love the place. But the economy is terrible, the company I had worked for (for a hundred years back in the day) is out of business, and come to find out, I just wasn’t ready to come back. Even being from here, after 7 years in Vegas, I had some culture shock. I’m (still) not ready for this sort of thing. I do love the food, so there’s that. And Cruces will always be better than El Paso, which were the options we had at the moment.

To backtrack a little, Dad was in Rehab in Cruces for exactly one day, and ended up back in (a different) hospital with pneumonia. I was still I Vegas—had 4 more days—and I’ve never felt so helpless in my life. I went to the bar that night after work, got drunk, and cried my eyes out. I’d already quit my job in Vegas to come ‘home’ to NM and take care of Dad, but I still had a few days to work, and I needed the paycheck, and I didn’t think he’d live long enough for me to get here.

He made it, I made it, and I drugged the pinche gatos for the drive, so they made it, too. I rolled into town on Thanksgiving Day, 2011. 25 Days after a trip and fall.

Early December he was transferred to the Acute Care Hospital of Southern New Mexico (LTAC). There he got absolutely amazing care. If you ever plan do get injured grievously, I strongly suggest that’s where you go. Staff is wonderful, therapy is wonderful, facility is wonderful. Seriously, if I didn’t have so much to do, I’d check myself in. For some reason they weren’t allowed to cut his hair, but otherwise, 5 stars.

Since then? Geez, I can’t even begin to explain. Dad was in (LTAC) from early December til February 10th, when he got too healthy and got moved to a Nursing Home. He was hospitalized twice between December and February, but has been stable since the move.

But he hallucinates. And, of course, he’s frustrated. I’m not sure if his hallucinations frustrate him or his frustration makes him hallucinate or both. But I know it sucks, and I know I haven’t been able to do much to help. Changing the subject helps, but I’m not there all the time. I go to see him twice a day, but I work full time, and I have to sleep, and I have to once in a while do my own thing, so he’s mostly alone. My Dad was born in 1941 and started working in 1955, at age 14*. That’s 56 years of working, almost every day. Mostly, he was a heavy machinery mechanic, although he put in some time ore drilling too. So to be stuck in a bed, an active guy like that, it’s literally driving him insane. He thinks there is equipment he needs to fix. He thinks there are parts lying around that need to be put away. The worst thing is, he thinks he’s tied down. Not all the time, but too much of the time.

I wish, sometimes, that I was hallucinating instead. I miss what I lost, what I give up. I absolutely hate the job I have now, but beggars can’t be choosers. I think all the time, when I’m tired, or not quite awake, I’ll just go back to Vegas. I’ll get that job back. Then, I realize, not it’s going to happen.
And, it may sound silly, but I really, really miss watching baseball. It’s June now, and I’ve only watched a handful of games on TV all the way through. I haven’t actually been to a game since 2011, and that’s just weird. Baseball was my favorite thing. It still is, but there’s no time. It hasn’t been all bad. I’ve connected again with my favorite cousin, my oldest friends, my god-kids. And I drink a lot less since leaving Vegas. It’s not that I don’t like it here, I probably would have come back eventually anyway. But I’d have liked to come back with a job lined up, with a place to live, on my own terms.

I have next to no support here, but I have fake support. I love that people ask me how my Dad’s doing. But I wish sometimes they’d ask how I’m doing. My Facebook inbox is full of people who want to know why I haven’t posted about Dad. It’s always accusatory, too. “Haven’t heard from you in weeks!” “What’s going on?” Mostly from people who live within 200 miles. (I know that sounds like a long ways away if you’re from Back East, but this is New Mexico-- if it’s not a 6 hour drive, it’s not a problem.) Motherfuckers, come see him! He’s not dead! He’d LOVE to talk to you! By all means, if you can talk reasonably knowledgably about a transmission, he’d rather talk to you then me!

And he’s not fucking contagious!!!

Medicare/Medicaid is a cagey beast. **Broomstick **said, in **Umkay’s **thread, that poverty can kill you if you’re disabled, or something along those lines, and she’s right. The thing is, Dad wasn’t really poor—not for the little town he lived in, and the way he lived. He has a small retirement, gets nominal Social Security, and still worked side jobs here and there. That’s what he was doing when he got hurt, a side job he probably wouldn’t have gotten paid for-because it was for a friend. And he had a life insurance policy (that Medicaid won’t let him keep), and savings (that Medicaid won’t let him keep). Had he not gotten hurt, he’d have lived quite comfortably until the Zombie Apocolypse. Maybe longer; one never knows. In fact, Medicaid tells us he makes too much. He couldn’t begin to afford the care he needs, but without some creative accounting, he can’t qualify for help. After working (and paying taxes) for 56 years! Pop’s taxes have raised generations of welfare kids in 56 years. Time for that to pay off, no? No.

Plus, nursing home care is not at all synonymous with health care. Dad is in supposedly the best home in Cruces that accepts Medicaid. But, it’s a state-run-for-profit institution. So, almost all residents are on Medicare or Medicaid (meaning fixed income). So, the only way to profit, being on a fixed income, is to spend less. The staff is, for the most part, great, but the facility just doesn’t have the money to staff the place adequately, or to buy needed equipment. I just found out they can’t do a swallow study on site. What?

So, now I’m just trying to get him out of here. Had we known how hard it would be to move him back in December or February, we would have taken him to AZ in the first place. Right now Arizona seems like the Magic Kingdom to me. It may or may not be all that much better, but if nothing else, my brother is there.
I love my Dad, but it’d be so nice to spend a day, all day, in my crappy apartment, couchin’ it in my PJs, without ever having to leave-or even get up to take a shower. Just one day. It’s amazing how priorities change.

Alright, I just re-read this, and it sounds really whiney to me. And, Holey Moley, it’s long! But, I’m also tired, so maybe it’s not so bad. Anyway, a few of you asked for it, you got it.

Next episode. . . El Madre Loco.

And someday, I might just tell you about my worthless sister. But only if you’re nice.

Thanks for listening.

FWIW, it doesn’t sound whiney to me. It sounds like you’re dealing with a lot all by yourself. You also sound a lot stronger than I would have been in a similar situation. I can offer you a virtual hug, my admiration, and the hope that things do get better for you and your dad.

{{{Sami41}}}

Sami, I didn’t see your original post, but you have made one hell of a sacrifice for your Dad. I admire you so much for doing that and hope you can get more support than you seem to be getting at the moment.

I’m glad that your brother stepped in when needed and had the balls to settle things down between you mum and Aunt. (I take that as your Dads sister, not your Mums).

Anyway, I am also going through the enjoyment of having my Dad in a nursing home. If you want to share stories, cry on a shoulder, or whatever, just PM me.

You’ve done well.

Hey Sami,
I was one of the ones who asked you for a Pops thread, so thank you!! HUGS
I hope it does prove to be cathartic & helpful for you! Now you have a good place to vent. this is what this thread is for. So Whine away ( not that I think you’re being whiney. Holy Crap! you’ve been through a heap & I have the idea you’ve barely scratched the surface.)

BTW, it’s not selfish to want things for yourself, or need people to listen to how YOU are feeling or what you need. I got a good buddy in Cruces. Maybe I’ll go out there to see her & look you up one of these days.

My very best to you & your Popsicle, honey. Ya’ll will be in my prayers & please keep us up to date when you have time. (& If you don’t, don’t worry about it)

Love,
Janis
PS Check your PMs

I understand your hesitance related to your time constraints, Sami41 (and hey, I just now recall there’s a thread discussing What’s Up with the Number 41? Cool.).

I’m a new Doper, and maybe I should read all the rules here for SDMB, but I’d like to think that starting a thread is not an ironclad commitment to maintain it indefinitely and answer every single reply and question. The SDMB world according to me, anyway.

The main reason I want to reply is, as I followed umkay’s fascinating thread and saw you jump in with the situation about your dad (and I believe at first you said the thread’s info just might save his life), well I mainly want to say that it was very cool how some, Broomstick and umkay and some others, pointed out how alarmingly dangerous your dad’s quality of care was - bordering on downright criminal, it seemed to me.

Well, good luck to you Sami41, and keep smacking heads there to get your dad the care he deserves. For your fast drive from Vegas to TX I’m betting you’re glad the new bridge is completed instead of having to crawl over the dam, at 25 even in the best of traffic conditions.

You are a tough person and I hope writing it all down in here helps. I admire the heck out of you. Here’s hoping you get some kind of help in moving to AZ and having someone nearby to share the load. And I hope your mom and aunt just stay away! I look forward to hearing some good news from you one of these days.

I didn’t know when the Popsicle thread would be forthcoming, so I sent you a PM regarding Dad’s care.

I’ll repeat it here, so you don’t have to fiddle with the PM business.

You mentioned in umkay’s thread that Dad doesn’t seem interested in TV or DVD movies.

I don’t recall reading about his existing hearing problems, but my recommendation is right on the mark in light of them.

As a hearing impaired person, I can tell you that TV loses its enjoyment once the hearing loss reaches a certain point. You can turn the damned thing up all the way, but a louder volume doesn’t make up for the parts you just can’t understand.

It’s the same principle with hearing aids–they don’t make perfect hearing. They simply AMPLIFY. If all you hear is garbage, then turning the hearing aids up simply gives you LOUD garbage.

People figure, “Hey, I can get glasses and see perfectly. Hearing aids should make a person HEAR perfectly.”

Nah. My comparison is that a hearing loss can fuzz out the ability to discern. It’s like looking at something wearing a pair of glasses where the lenses have been covered with soap film. Making the noises louder is akin to using a brighter bulb in the lamp next to you. Since you’re looking through the soap film, a brighter bulb won’t help much.

Hearing-impaired people pick up cues from the people they talk to. Lip reading, body language, and just familiarity of the person all contribute to conversation. You can’t get those cues from TV.

Thank God, there’s closed captioning.

Check Dad’s TV for the closed captioning. Turn it on. Most DVD movies can have the captioning enabled from the set up menu. That has to be done for each movie, though.

Helping Dad enjoy something as simple as watching TV again might make his days a bit easier.
~VOW

Good grief, girl, you’re going through it, huh? I don’t have much to say except that I’m listening and I’m more than happy to be a reference point for quad issues as they come up.

Also, you’re a terrific writer. :slight_smile:

Wow. I’m so sorry about your Dad’s accident. He is fortunate to have you though. Many children would have stuck him somewhere and continued to live their lives as usual. I hope that you guys make it to Arizona soon so your dad can get some better care and you can get some relief. No matter what happens in the future I hope it offers you some comfort that you did right by your father.

You are also a gifted storyteller. I’ll be keeping up with this thread.

I commend you for your fortitude and big heart. Just as important as your father in this situation, however, is you. You have to make sure you make time for yourself every now and then. If you don’t you will eventually break. So if this thread is part of that “me time”-let 'er rip. :wink:

I have a major point to make, Sami41 and it is VITAL that you listen to it:

If you don’t take care of yourself you can’t take care of anyone else.

Believe me, I understand the caretaker role. 20+ years married to someone disabled (though not nearly as badly as your day or Ambivalid or umaky), being the “relief” for my father-in-law’s primary caretakers, taking care of my mom her last few months…

Something not appreciated by most people is that caretakers need to be cared for, too.

You need a BREAK.

I hear that very clearly in your post. You are tired. You are emotionally exhausted and socially isolated. You NEED some “me time”. As you say - you NEED a day to just sit in your apartment and take a break from all the responsibility.

The problem is how do you get that? I was fortunate when I was mom’s primary caretaker - I had three different people who either came and helped me do stuff in and around the apartment, or did the shopping/laundry/whatever, and once a week gave me a half day all to myself to just get the hell away from it all.

If you can’t get help from your family (for whatever reason) or local friends then… what?

I repeat - you NEED this. You need it for your mental and emotional health. It is essential… and damn few people in your life are likely to understand that.

By all means - use this thread to vent if it helps. And maybe someone will come up with a suggestion for how you can take care of your needs as well as your father’s.

For the record, it’s Hug Your Cat Day. I saw it on Facebook, so it must be true. I did that–hugged the cats. The big ones weren’t interested in hugs. The Girl got pretty mad. She’s not huggable, she’s just mean. The Big One put up with the hug, but if a cat could roll its eyes. . . The Baby hugged me back, then hocked up a hairball. Anyone want a cat? Or 3?

Thanks, all, for your input and advice and hugs. I do want to tell you that sometimes, once in a while, you get what you ask for. I wrote the OP in the middle of the night a couple of days ago. I said I needed some downtime. I wanted to watch baseball.

And:

My Mom (who is still a crazy person) was in town, but I didn’t know she was staying. Normally, when she comes to town she stays with my Cousin, the Saint. My cousin feels terrible that she doesn’t visit Dad often, but really, she handles my Mom all the time. That helps Dad (and I) more than she could ever know. Mom was slated to go to El Paso that evening. I thought she was already there. But I hadn’t even looked at my phone, and just after I posted the OP I saw that Moms had sent a text, hours earlier. She was staying the night with my cousin, The Saint, right here in town.

So. . . Since she was here anyway. . .I asked her to go see Pops in the morning, and tell him I was sleeping and I’d see him in the evening. I slept til 11. The Cubs were on WGN, I watched the whole game. Mom stepped up, and of course Dad understood. I didn’t get a whole day off, I still had to take a shower and get dressed, I still went to check on him that night, but I got the whole beginning of the day off. And I got to watch a baseball game. I will make all of my wishes on the Dope from now on 

As for the Popsicle. He was alright tonight, but had terrible last few days. Pain, some real, some imagined (I think). Dreams that drive him nuts.

I get off work at midnight, and I always stop by. I go more for the staff to see me than for Dad to see me. I always hope he’s asleep, and normally he is. But, I don’t want the graveyard crew to think he’s not being watched. I want every shift to know I’m watching. So, I woke him up to say good night.
He thanked me for coming to check on him, and then told me about the engine he was working on, and then told me to go to bed, and then asked for my phone number, in case he needs me.
So:

  1. Understands where he is.
  2. Living in the past.
  3. Concerned about me.
  4. Worried about himself.
    . . . . All in about 3 minutes. If any of you can tell me how to properly spell Aye Yi Yi, let me know.

As for this thread. . .

Again, I thank you all. Specifically, though:

Janis, thanks. Got your PM, will reply presently.

Cicero, yes, my aunt would be Dad’s sister. She and my Dad are only 13 months
apart, and were essentially raised like twins, which, you’d think, would be great. But my Aunt is such a . . . I don’t know the word for what she is. . . She has never gotten over their mother’s death, when they were 14 and 15. So, even though she has 3 kids and 10 grandkids (plus her most recent husband’s kids and grandkids) she feels like Dad is her only “family.” Whereas Dad, although he loves her very much, did things like get married and have kids and make a life and, I guess most importantly, moved on. My Aunt, the night before my folks’ wedding, begged my Dad not to marry my Mom. Somewhere along the line my Mom found out about that, and it’s been “on” between them ever since.
I’ve said it before, and I’ll say it again, my Mom is a crazy person. But when it comes to my BatShitCrazy Aunt, Mom doesn’t seem that far off the mark. Anyway, that’s a whole nuther chapter in this crazy book.

What’s your Pops in for, Cicero? I hope he’s having an OK time. How much do you love and hate the people who work there? On the one hand, they’re awesome, and must be absolute masochists to do what they do. On the other, they really can never do enough. Please feel free to PM me as well. Or vent here if you need to.

Echo. . . I LOVE that bridge. But the weird thing about it is that the very first time I went over it, I was halfway across before I realized I was even on it. It’s weird. When you’re on the Dam, the bridge looks so tall. But when you’re on the bridge you’ve got high retaining walls, and enough room for another lane (at least) on either side, you can’t even see the Dam below you. All the same, it makes the commute better. That always was the worst part of the drive.

This is my take: If you’re honeymooning, take the old road, stop on the Dam, feel good about The Real American Men who not only hydrated Arizona an SoCal, but also kept the Card Games and Call Girls in business back in the day. It’s a piece of History, and without the Dam, we wouldn’t have Vegas. But. . . if you need to get somewhere in any reasonable amount of time, avoid Hoover Dam like you’d avoid Mono: it takes a long time to get over, and you might find yourself nauseous.

VOW, now I see your PM, thanks. You may be right, now that I think of it. Pop’s has always had hearing problems, owing to working around heavy machinery for half a century. But I didn’t ever think about the difference between hearing and volume–probably because I can still hear. As far as closed caption goes, I’ll
certainly give it a shot. In Pop’s case it may not work, since he’s blind in one eye, and far-sighted in the other. That being said, I’ve been bugging the powers that be about checking his hearing. He’s had a problem with wax buildup for as long as I’ve been alive, but that’s yet another thing they tell me can’t be tested on site. More on that later.

And Broomstick and Ambivalid, ugh, I know. I take care of myself as much—probably more—than I ever have before. But the thing is, I never really did. I drink, not so much anymore, but still. I smoke. I eat like an unsupervised teenager. I should join the gym, but when? I’ve lost weight since I’ve been back (at least 23 grams), so that’s good, I suppose. I think about going to therapy, counseling, something, I just don’t know. Those things take time, which is one of many things I don’t have much of. And if I did have the time, I’d almost surely sleep through it. But, I’m aware, and I’m trying. And thanks, can’t hurt to remind me.

And Umkay, he can cough. I knew he could, because I almost choked him to death feeding him ice cubes awhile back. But I didn’t know if that was just reflex. I asked him, though, and he says he can cough on command. Still waiting to hear from the Nurse Practitioner who checked his lungs on Thursday.

As for Arizona. My brother is looking into the transport/admitting thing. We’ve been told he can be discharged from a hospital to another facility, but that he can’t just transfer to AZ unless/until he’s a resident. So, my thinking is: I apparently have to move him for a swallow study. I’ve been told I have to move him to have his hearing checked. I know he has to go to a hospital for chest x-rays. And, he has a weird mole that I want checked out. Not to mention the pressure sore.

So we’re looking into it. Any one of those things might not get him admitted to a hospital. But all of them might. Anyone who knows about Arizona Medicaid, feel free to chip in.

I know I promised the story of Mom, but it’s just going to have to wait. It’s well past my bedtime. Thanks all.

Perhaps this place needs a “Meet my Crazy Relatives” thread.

GAWD knows, we’ve got plenty of nuts and squirrels in our family tree!
~VOW

Sami41, say what you want/need to say in your own time. Most of us here are very patient. Now that we know you’ve got some situations going on we’re all dying to hear about it, but we also realize we’re not your first priority. If you can’t get back to us for a bit we’ll just assume you’re busy - or taking a well-deserved nap! - and wait for the update.

I don’t know what to say, except I feel bad for you. Is there anything we can do?

:frowning:

I knew I wasn’t really going to have time for this thread. But thanks for your patience.

I made it through the work week in one piece. I also found out, according to someone in my office, or somewhere up the corporate ladder, that “differentiator” is a word. I had no idea, but I see that spell check agrees.

Dad had an OK week, too, but it’s pretty clear we’ve got to get this Medicaid thing figured out, and pronto. Towards the end of May I was informed that Dad’s
Medicare was going to run out, the day before it actually ran out. 100 days in a row, without hospitalization, and they’re done. However, previous to that, Medicaid told me I’d need to have everything ready to go with a bow by June 15th. So, I thought I had a most of a month, I actually had most of an afternoon.

It’s my bad, for not educating myself on all of this nonsense, but all the same, it sucks. Obviously, they can’t kick him out, as much as they might like to get rid of me. But, for this 3 week gap in coverage we’ve been put on private pay. And that’s fine, too. Insurance will cover some of it, we’ll cover the rest. It’s expensive as all get out, but not like the Pops’ll be touring Europe anytime soon.

Except . . . apparently private pay residents get different therapy, read that: less therapy, than Medicare residents do. Or than Medicaid residents do. You’d think it’d be the opposite, wouldn’t you? Alas, that’s how it goes. So for 2 weeks now Dad has been getting less therapy than the insufficient therapy he got for the first 100 days.

Now, as for PT, of course we hope it works. For his general health, and for his future. If we can just get some control in that one arm so that he could use a stylus, he’s open to the idea of being a computer-based old man. 100 days and 2 weeks ago he was lifting 1 pound weights with that arm. Now, he can move it from the shoulder, but not from the elbow. But mostly, less PT sucks, because PT gets him out of his room.

He has a room with a view. It’s a view of the west wing of the building he’s in, and there’s nothing but desert landscaping in between his window and the west wing.

Can we talk about desert landscaping for just a moment?

I realize we’re in the desert, and I realize we’ve been in a drought since . . . always, I guess. The first time I heard we were in a drought I was about 7 or 8 years old and it was snowing. But my Granny said we were in a “50 year drought,” and therefore we should be thankful for freezing our patookises off, because “we need the moisture.” If I had a nickel. Even in elementary school, I knew that whatever ludicrosity came out of her mouth, no matter how improbable, or how illogical, or how fucking cold the drought was, it was best to just roll with it. Smile and nod. I think that particular lesson served me well in all those years I tended bar, i.e. dealt mostly with drunk people. But once again, I digress. Let’s get back to the landscaping.

Desert landscaping may be good for this environment, and, I’ll admit, some do it better than others. But, the fact remains: It’s really all just different shades of brown. Which, I guess, in Southern New Mexico in the Springtime, matches the sky quite well.

Occasionally, you’ll see grey stones thrown in. I don’t want to offend, so, if you’re a desert landscaper, please realize that *I realize *that you put the grey stones *exactly *where you want them, and that they are not just “thrown in”. That was simply a figure of speech. I, for one, was absolutely mortified last month when I saw three little girls out there throwing rocks at each other. The girls were having a blast (we’re easily amused in the Land of Enchantment,who needs toys?), but my god! Would you think about the landscaping?

The particular desert landscaping outside Dad’s window is a huge sea of rocks in every shade of tan and brown you can imagine. Burnt Sienna, even. Throughout the sea of brown, made up of slightly larger grey rocks, they’ve fashioned a “stream” of sorts. A river runs through it. The stream of grey is bordered by even larger, but once again brown, rocks. And near the stream sits the saddest tree you’ve seen since the first part of A Charlie Brown Christmas.

I get it. They were going for a feeling of water during a “50 year drought.” And trying to pull it off without actually using any water, in a town where the actual river—the inaptly named Rio Grande—hardly ever has water in it. So, props where props are due and all that, but all the same, when Dad spends a 3rd of every day staring at it? Not so pleasing to the eye in the long term.

Who am I kidding? He’s color blind. It bothers me a lot more than it bothers him. So, enough about landscaping, except for to say this: If we were really serious about saving water, we’d desert-landscape the golf courses, too. Par this course, Tiger.

My point, though, is that therapy—whether it’s working or not—is different. He sees different people. He goes to other rooms. It’s sensory therapy as much as physical therapy, and he’s already different with less of it. Hopefully it’s just one more week. Fingers crossed, thank you, please.

Thanks again all for your kind words and support in general.

And Farmer Jane, no, I don’t think there’s much anyone can do. Unless you want to do my laundry and run a vacuum once a week or so:) We’ve just got to push through, but thanks for asking.

VOW, search for Sampiro’s threads about his nutty family. I think someone linked one of them in Umkay’s thread. His people make my people seem absolutely boring.

Broomstick—you’re a sweetheart.

It’s bedtime. Tomorrow I’m off work. Going to spend 4 hours driving to pick up Dad’s spare glasses, because somehow the nursing home somehow lost his glasses. Yeah, buddy.

Good night!

Gahhh. I HATE “the system” people should be deprived of care because of their method of payment, not to mention the lovely maze that is our Medicare system??! SO frusterating!! & the nursing home lost his glasses?! How did that happen? I hope & pray he is somewhere better soon! As for the lack of pretty landscaping outside how about a roataion of postersINside? Scenic landscapes, travel posters… I dunno, pin up girls?

And don’t worry about us, just update when you can.

Love to you & your Pops!

Has your dad been seen by a psychiatrist? Medications may help with th hallucinations. It may be ICUS psychosis, but it also may be a bladder infection. In any case, it isn’t good and should be treated.

Best wishes to you. You’re on a hard, hard road. Like others have said, take care of yourself.

That whole medicare stuff is crazy. In 2010 my grandpa had a massive stroke and is paralyzed on the whole left side of his body from it and it weakened his right side as well to the point that he’s stuck in bed. When he was in the nursing home they told us last minute that his 100 days were coming to an end but they they didn’t explain it clearly to us. The poor guy had the stroke at work, he was working 45 to 60 hours a week despite the fact that he had loads of other health problems and was 74 years old. So being cooped up not being able to move or or breathe properly on his own was a real shock and was enough to deal with without having to worry about insurance and medicare.

Be careful with it and make sure the insurance company he has is willing to pay. After my grandpa’s 100 days the insurance company thought that that was enough and they said it was no long medically necessary for him to be in the nursing home as they deemed him “custodial care”. This was hard to believe since he had a feeding tube, a trach, and needed 24 hour care, but they have such black and white guidelines. I think if he was younger and in better health when it happened they would’ve given him more time. I went about 5 rounds with the insurance company on my grandparents behalf and in the end got some extra time out of them but you really want to be careful and have everything clearly explained. Like your father, when grandpa was on private pay his PT pretty much stopped and they’d come in and do a couple things with him, but nothing like before. It’s such a shame. If you can get the creative financials going for you guys then totally apply for medicaid as it’s retroactive up to a certain point I think I was told.

I wish you the best of luck and I hope your dad improves as much as possible. Being a full time caregiver is extremely hard. Currently my grandpa is back home with hospice, yet he’s full code, and my grandma and I are taking care of him. See they don’t qualify for medicaid because they have too much money, but if we were to put him into a nursing home their bank account would be empty in a year or a bit more. Besides my mother no one comes around and no one cares. I’m only 31 and I find it so difficult because I’ve had to drop everything and my relationship with my boyfriend has suffered a great deal, no one understands why I’m still helping. It’s hard to think about walking away when this man has been more like a father to me than my real dad ya know.

Best of luck!! If you ever want to talk or rant about anything send me a private message as I’ve been in a similar situation.

Lori