Mrs. W in IA

[Iowan]

Happy birthday man!

Needs to be a thread on this.

[GW in IA]

Been a pretty interesting week here, whether god or bad will be figured out later.
Started out Mon trying every trick I could come up with to come up with a way to make it out to Boston to be there for our friend, even had a ticket bought at one point, but just too short of notice to get all the ducks in a row around here. Put me in a bad place already and the week only just started.
Then Tue night I started getting texts from Patty's caregiver, that she wouldn't be in tomorrow, rude texts, very immature texts, especially coming from a 30 something mother of 3. By the end of the night I had been insulted just about enough, and we have dealt with these issues before, so by noon on Wed. we had no daytime help anymore. I almost think she may have been looking to get fired, 3 years, 30 hour a week can be pretty tough in anybody else's house, and ours is much more draining emotionally than most. Wish it would have gone down better, but honestly, the air around the house is lighter with her gone. She was good at the mechanics of the job, but her attitude was bringing everyone down, and we never even noticed it. With her gone P and I are very much more "us against the world" like we used to be. Of course we're still left with a pretty obvious problem, but as of right now I'm confident we'll find a couple of people to fill the void...
Which brings us to the next big trauma from this week. Yesterday we had a meeting with and were approved for Hospice... It's a big damn word, and never a happy one, but it doesn't mean what I guess I always thought it meant. Or maybe it does and I still don't understand it all, but regardless, if it all works out, we should get back some of our daytime help soon, and finally with some ins, backing. The other side of the coin is all on Patty, just her dealing with the fact that she is considered "hospice eligible" has her emotions all jacked up.
it's been an up and down kind of week, I'm sure things will come around, but it's a little scary, not being able to get to jobs that are piling up, and not getting to send bills for those jibs either.
Still I do keep coming back to the fact that as scared as we are it just feels more pleasant around the house. Maybe change is Good?

[John A Arkansawyer]

Which brings us to the next big trauma from this week. Yesterday we had a meeting with and were approved for Hospice... It's a big damn word, and never a happy one, but it doesn't mean what I guess I always thought it meant. Or maybe it does and I still don't understand it all, but regardless, if it all works out, we should get back some of our daytime help soon, and finally with some ins, backing. The other side of the coin is all on Patty, just her dealing with the fact that she is considered "hospice eligible" has her emotions all jacked up.

I spent a few minutes looking up what "hospice eligible" means in the context of ALS, and I think you're right: As a diagnosis, it's not as bad as you'd first think, and it changes what gets paid for and what doesn't in a way that's to your advantage. That part's good, I think. I also get why it gets Patty's emotions going. It would mine.

Still I do keep coming back to the fact that as scared as we are it just feels more pleasant around the house. Maybe change is Good?

You'll get better help during the day for less money. That's a good change. And I can see how this'd still be rough on you both. So if it's more pleasant now, good.

[Tequila Cowboy]

It's probably for the best Gary. Sounds like you have help on the way and this is another new normal. Thinking about you guys.

[one belt loop]

John and Dean covered it pretty well, Gary, except the part where you and Patty are never far from my thoughts. xoxo

[lynne]

Sending good thoughts. I know the term hospice is a very scary word but it really will enable you to get more services and more coverage for those services. Caregiving is a tough job, but there is no need to treat a family or patient with anything less than the utmost respect and dignity. If they cant, then they shouldn't be providing the care. Hang in there.

[GW in IA]

Just a couple of things I have learned over the last few weeks:

Hospice does not mean what you probably think it means. (actually, I kind of knew that, but now I have proof.) No darkened rooms/ morphine drips/etc, It does require a few uncomfortable conversations with the likes of councilors and ministers, but they're not too pushy.

Hospice is still a depressing word. No mater how you stack it, no matter how many times you realize that it doesn't mean "the end", it's still not good when you realize that you, or someone close, is on Hospice. They might be great at their job, a huge help financially, but still, the criteria is, "likely to die within the net 6 months", and no matter how confident you are that that's not going to be the case, the idea that lots of other people think it could be, is a gut check.

Lastly, and maybe most useful is this. If you hire someone to clean your toilet, and then ask them to wipe your ass, they will feel that that's above their pay scale. And conversely, if you hire someone to wipe you ass, and then ask them to clean the toilet, they will feel the same. It should be noted here, that both of the people in this scenario are being paid exactly the same.

It took us a few weeks, but I think we have a good handle on the home help situation now. Lots more people in and out than we're used to, or than we really like, but at least I'm back to work, and the fresh blood seems to be helping Patty's mood to.

[John A Arkansawyer]

Lastly, and maybe most useful is this. If you hire someone to clean your toilet, and then ask them to wipe your ass, they will feel that that's above their pay scale. And conversely, if you hire someone to wipe you ass, and then ask them to clean the toilet, they will feel the same. It should be noted here, that both of the people in this scenario are being paid exactly the same.

It is two very different skill sets. If it weren't, and if you saw my toilet, you would not believe my daughter ever had a clean butt in the first few years of her life.

[MrsUncleFrank23]

All I can say is ALS sucks. Wish it was an experience we didn't share, my friend. My thoughts are with you and Patty. Hug those kids!

[sg207]

Lastly, and maybe most useful is this. If you hire someone to clean your toilet, and then ask them to wipe your ass, they will feel that that's above their pay scale. And conversely, if you hire someone to wipe you ass, and then ask them to clean the toilet, they will feel the same. It should be noted here, that both of the people in this scenario are being paid exactly the same.

It is two very different skill sets. If it weren't, and if you saw my toilet, you would not believe my daughter ever had a clean butt in the first few years of her life.

I laughed way more at this than I probably should have!

It sounds like you guys are hanging in there Gary, and that's a good thing. It's good that you got rid of the negativity, nobody needs that in their life, especially you and yours.

Take care of yourself, your family are always in my thoughts.

[Smitty]

Thinking bout y'all

[GW in IA]

I laughed way more at this than I probably should have!

Good, you were supposed to .

[beantownbubba]

Net net, it sounds like getting rid of the negativity was the right decision w/ the right outcome. That's a good thing in the midst of a very dark cloud w/ only the thinnest of silver linings.

One thing that I learned: The counselors, ministers, etc have a great lack of self awareness. They are very empathetic, sympathetic and mostly very nice people. But they're just doing their jobs and like most people just doing their jobs, they tend to think and act inside a very narrow box. So they are constantly pushing you towards "the mean," the usual, the way everyone else does it, whatever it happens to be at the moment, and usually that way also happens to be the path of least resistance for them. That's not even said as a criticism, it's just the way things (and people) are. But don't feel bad if you think they're giving you bad or inappropriate advice. 'Cause if you think that, they are.

[GW in IA]

Some of you already know, others may not, but Friday afternoon, while away at my in-laws (a trip that I insisted on even though she said she didn't feel up to it) Patty started having an extremely difficult time breathing, enough so that we found the nearest town, and headed in to the ER. 4 1/2 hours later, we were admitted into the smallest dingiest hospital room I have ever seen. They decided it was pneumonia, started her on some IV meds, and tortured her with some suction tubes up her nose. pretty soon they brought me the equivalent of an airplane seat and a flannel top sheet to sleep on, and we both drifted off into peaceful slumber. The next morning, they woke us up at 6:15 to move us to a bigger room. (are we staying another night? "Sorry we don't know, the Dr. will have to tell you that". Can she get some food? she hasn't eaten in over 20 hours. "Sorry, the admit nurse put her on a no food by mouth order, the Dr. will have to determine that")
Dr. finally shows up. tells us that ALS patients can't swallow, so therefore they would like to implant feeding tube. (I read that same webpage too, but I did it 4 1/2/ years ago) "No we are not getting a feeding tube put in." Well then, what would you like to see from us treatment wise?" "Well if you won't give her any food, I think we need to check out, so we can hit up McDonalds..."

So that's what we did, minus the McD's. She is still coughing, but not nearly as bad, she wears her breathing mask through the day now, so that's new. Looks like my Lucero/Minneapolis trip is probably off. She really isn't having much trouble anymore, but the weekend put the fear of God in her, so she wants me close. Hard to blame her.

I've decided that right about now, my life resembles that of some kind of Roomba vacuum, My job is to stay quietly in a corner until called on. Maybe more like the robot maid from The Jetsons, at least when she came out, she was full of smartass comments.

[beantownbubba]

Let's go w/ the vacuum. The thought of you in a maid's outfit is more than I can bear.

[Tequila Cowboy]

Let's go w/ the vacuum. The thought of you in a maid's outfit is more than I can bear.

Oh I don't know. Are you telling me this ain't just the look for Gary?





Seriously though, thinking of you guys. Every single day.

[Barely_Oakely]

I missed ya at the Lucero show last night, but you made the right choice, rock and roll is a close second, but family always comes first.

[GW in IA]

I just miss her so fucking much. I mean, she's sitting right across the room, right where she always is, but this past year, especially the last 6 months, her speech has gotten so weak, and it takes so much effort, that we just, don't. the only thing we ever talk about is what does she need. "I'm hungry" "I need the toilet" "Change the channel".
Maybe the closest I've ever come to a breakdown (or whatever)... About halfway through last nights show in Minneapolis, I just "needed" to be home. I came home today, and I'm skipping tonight's show in Sioux Falls. Road tripping without her just isn't the same, seeing my friends coupled together at the show hurts. The stress of it (I think) gave me a massive migraine, and made the whole show not worth it. So then today, I come home, (because being gone is bad) and when I get into my driveway, I realize that I really don't want to be here either. Staring at Facebook, looking at the side of her face, wanting to talk with my wife, and knowing that if I try, the effort leads to frustration, and eventually anger, so I don't start and I go back to Facebook.

Fuck.

[Clams]

Sorry man. So sorry.

[Tequila Cowboy]

I just miss her so fucking much. I mean, she's sitting right across the room, right where she always is, but this past year, especially the last 6 months, her speech has gotten so weak, and it takes so much effort, that we just, don't. the only thing we ever talk about is what does she need. "I'm hungry" "I need the toilet" "Change the channel".
Maybe the closest I've ever come to a breakdown (or whatever)... About halfway through last nights show in Minneapolis, I just "needed" to be home. I came home today, and I'm skipping tonight's show in Sioux Falls. Road tripping without her just isn't the same, seeing my friends coupled together at the show hurts. The stress of it (I think) gave me a massive migraine, and made the whole show not worth it. So then today, I come home, (because being gone is bad) and when I get into my driveway, I realize that I really don't want to be here either. Staring at Facebook, looking at the side of her face, wanting to talk with my wife, and knowing that if I try, the effort leads to frustration, and eventually anger, so I don't start and I go back to Facebook.

Fuck.

Gary, my heart hurts for both of you. Beyond that I have no words. Lots of people love both of you and your beautiful family very much and you are the bravest people I know. Know that at least.

[Lurleen McQueen]

Honey. I am just so sorry. It's fucked up. Damn, maybe just pull a chair up beside her bed/chair and put your hand over hers for a little while? My heart breaks for you. There's so much love in the every day, though. I always remember watching Rebecca push Ben's glasses up on his nose. Wrecked me. Such a tiny gesture, but so full of love and caring. I'm sorry the rock show didn't give you a little reprieve. Usually it does, but there are those times that not even a rock show can make better. We love y'all. Hard.

[Iowan]

Fuck, man. Sorry.

[beantownbubba]

{{{GaryPatty}}}

[pearlysnaps]

I'm sorry, buddy. Sending love and kind thoughts and wishes your way.

[John A Arkansawyer]

This is such a fucked situation. I'm sorry, Gary.

[Smitty]

I don't even know what to say. I'm just so sorry.

[alquina]

Oh Gary, this broke my heart. I'm so sorry. Sending you nothing but love.

[bovine knievel]

Lots of love sent your way from California.

[chuckrh]

hang in there. as someone who is living with a chronic, debilitating, worsening condition i can tell you that your support is the most important thing in the world to her. i don't have huge amounts of support but what i have keeps me going. there have been times where i've wanted to give up. i don't remember what not being in severe pain feels like. not a good space to be in. take care.

[GW in IA]

Becca once told me that when the end comes you'll know it. Based on that, I guess the end isn't here, but it does make me wonder how bad things can or will actually get before "the end is here and I can tell" Days come and go, some are slightly better, but always end with less of her than they started with. Today I wanted to wring her neck for refusing to use the speaking software right there on her fucking computer, making me feel like less of a husband because I can't understand her words or read her mind Constantly being in charge of making sure no one outside the inner circle knows how bad shit is, and every time she takes a downward step, I don't get scared that this might be the final slide. No I get scared that it won't be, I get scared that shit is about to get harder, worse, with no end in sight. bed sores don't heal, they make life hard. going #2 requires a muscle group, one that has gone to shit {no pun} on my wife, When she's loose, no muscles to stop it coming, when she's bound up, no muscles to push out. Most of my waking life is trying to keep up with her bathroom issues, and most of the night is resetting and moving towels and pads to ease up pressure on bedsores.
I can't drink my problems away, cause if I did I couldn't do what needs doing, I can't just up and run from them... because I still love here and need to see this through.

I do need it to end though, I love her, but I also love my kids, and while they will always miss there mother, they only get on youth, and its fucked up by our life in this house, kicked from room to room, always needing extra attention and not getting it because moms getting it. I also need to find something that resembles myself at some point, I used to be a fantastic dad, now if I get 10 min without Patty needing anything and a kid wants something I resent the hell out of them, and I'm really bad at hiding it.

I suppose now I give you some lesson, some light at the end at least a one line joke. I'm sorry, going to fail at that as well, and start all over tomorrow.