Curmudgeon In Hospice - [November 2013]

Subject: RE: BS: Curmudgeon In Hospital - Oct 2013
From: ChanteyLass
Date: 16 Oct 13 - 10:12 PM

Linn, please take care of yourself!

Subject: RE: BS: Curmudgeon In Hospital - Oct 2013
From: billybob
Date: 16 Oct 13 - 07:02 PM

Dear Linn

hang on in there and know we are with you, and Tom.

Hope tomorrow is a better day, and take care of you!

sending love and healing thoughts,
Rainbow crew are out there waiting!! They have helped me through so many bad, bad days

Wendy xxxxx

Subject: RE: BS: Curmudgeon In Hospital - Oct 2013
From: Bat Goddess
Date: 16 Oct 13 - 06:38 PM

Two glasses of wine (and a book) helped. One dish-ragged cat (Rufus) helped. One stiff-legged, stomping, undecided and totally unrelaxed cat (Sabine) did NOT help.

Came downstairs to cook something uncomplicated, something comforting, and was immediately annoyed by the phone ringing. And it turned out to be a telemarketer wanting to help me with some Windows-related whatever that I'm sure he wanted to sell me something to fix. I yelled at him. I NEVER yell at telemarketers, but I yelled at him. Told him I have NO Windows-based computers here and I NEVER want to hear from him again. (Yes, he or someone else with the same Indian-accent has called multiple times before and been told just that, though a lot more politely.

I'm wrapping up my supper. It's good. What I'm craving is rum cake and a lot of whipped cream but have neither the wherewithal nor the energy to do anything about it. Why can't the Universe just know what I want before I do and just present it to me? Is that really so demanding and unreasonable?

Ach! I'm checking Facebook and going to bed. Maybe call a friend in Seattle. Read a bit more. Drink another glass of wine. Call Tom again. Turn out the light and go to sleep. Tomorrow is another day...

Linn

Subject: RE: BS: Curmudgeon In Hospital - Oct 2013
From: gnu
Date: 16 Oct 13 - 05:01 PM

Keep the faith, both.

Subject: RE: BS: Curmudgeon In Hospital - Oct 2013
From: Bat Goddess
Date: 16 Oct 13 - 04:46 PM

Well, it's looking a if it's too late for a nap, but after I post this I AM going upstairs and under-reacting for awhile.

I realized yesterday that the stress is catching up with me. Today, by the time I got to the hospital, I was absolutely exhausted.

I ended up staying only about four hours -- Tom was feeling agitated. I think he just really wants to go home, which he will either tomorrow or Friday. He was "Hyacinthing" -- the phone cord, cord for his BP cuff, nurse call button cord, etc. weren't arranged to his pleasure, there was a wrinkle under his bum, the sky was just the wrong shade of pink (Hitchhiker's Guide to the Galaxy, in case you didn't catch that last reference). I threatened him with broccoli or a fruit salad of peaches and apricots if he didn't figure out what he wanted that was on the lunch menu. Each time he'd look pained, I'd ask if there was something I could do. He'd adamantly say, "No!" Then I'd inveigle out of him what was wrong...and either attend to it myself or go get his nurse. It was almost as if he was enjoying being grumpy and uncomfortable.

My first disappointment of the morning was when I got to McDonald's this morning, absolutely famished and fantasizing about breakfast burritos, they had just switched to lunch. I swear the breakfast cut off gets earlier and earlier all the time. (It was 10:40.) I, who usually has trouble crying, had to fend off a strong urge to just sob.

That was the first indication of my stress and fatigue level. I finally looked at Tom and explained that I'd just discovered that I have absolutely no reserves of anything, especially not patience, and that it was probably best (since he was planning on going back to bed and taking a nap soon) that I leave and head in search of a nap myself and try to recoup my resources.

Game plan -- he may be moved out of the Critical Care Unit this evening or tomorrow. He will probably be released tomorrow or, possibly, Friday. The case manager is working on getting Tom a new wheelchair through Medicare. (His current one has seen hard usage for the past year and a half and has some safety/maintainance issues. His cardiologist and defib reading is being re-scheduled until next week when his cardiologist will have the records from this hospital stay. We'll also get his advice on the suggestion by the hospital cardiologist that Tom's defib/pacemaker be swapped out for a bi-venticular one. And I'm a little closer to acquiring a small recliner which will make it easier for Tom to sit with his feet elevated.

I would LOVE a roving band of masochists to break in and clean my house (or at least the kitchen...and the litter boxes; I cleaned up the cat barf on the kitchen counter and the cat poop that had been dragged out on the floor and I didn't have to murder any yellow jackets this morning before 7 a.m.) Got some stuff to Goodwill on my way to the hospital -- and found some possible footgear for Tom. Hope they fit his changeable feet...

Suppose I better check my messages...and then retreat upstairs and maybe try to call my sister and see how the on-going crises in Milwaukee are going. And read. Or maybe just read. Maybe a glass of wine (since it's almost 5 p.m.) and read...

Linn

Subject: RE: BS: Curmudgeon In Hospital - Oct 2013
From: GUEST,Guest-Dianne
Date: 16 Oct 13 - 03:37 PM

Oh no!
I am so sorry. I too will be sending good thoughts and healing vibes.

Been out of town lots this summer/early fall and feel very out of touch. I will check in again tomorrow to catch the news and if Tom remains in the hospital I'll get over this weekend.

Meantime,I am concerned for you. It is hard physically and emotionally to be where you are. Take care. Use your friends and other support systems as much as possible.

Dianne

Subject: RE: BS: Curmudgeon In Hospital - Oct 2013
From: maeve
Date: 16 Oct 13 - 02:05 PM

Checking in, Linn and Tom. You have so many people pulling for you both!

Subject: RE: BS: Curmudgeon In Hospital - Oct 2013
From: gnu
Date: 16 Oct 13 - 01:05 PM

No news is good news but no updates is... well, no updates. Just hope all is as well as can be. I am with Megan and the rest. Mindful.

Subject: RE: BS: Curmudgeon In Hospital - Oct 2013
From: georgeward
Date: 16 Oct 13 - 04:06 AM

Love and light,   - G

Subject: RE: BS: Curmudgeon In Hospital - Oct 2013
From: Megan L
Date: 16 Oct 13 - 03:19 AM

Thinking of you both

Subject: RE: BS: Curmudgeon In Hospital - Oct 2013
From: Genie
Date: 15 Oct 13 - 10:16 PM

Sincerely echoing much of what's been said here already, Linn and Tom.
I wish you strength and calm in "wading through the morass of medical opinion" and navigating the health care bureaucracies.   Quality of life is very important, and I wish you didn't have to choose between quality and quantity. But I've appreciated Tom's and your contributions here at Mudcat, and you are both in my thoughts and prayers. Sending prayers, light and as much positive energy as I can.
{{{{{{{{{{{{{{{{{{{{Tom and Linn}}}}}}}}}}}}}}}}}}}}

Genie

Subject: RE: BS: Curmudgeon In Hospital - Oct 2013
From: gnu
Date: 15 Oct 13 - 07:07 PM

I got nothin to add to such wise councel. Only good thoughts and prayers from the bog country of Kent County, New Brunswick (which is now not fly infested thanks to Old Man Winter reminding us what is to come with fly killing frosts).

Take care of you... both.

Subject: RE: BS: Curmudgeon In Hospital - Oct 2013
From: fat B****rd
Date: 15 Oct 13 - 04:35 PM

I have recently been the beneficiary of much love and kindness here. Now I'm sending mine.
Charlie.

Subject: RE: BS: Curmudgeon In Hospital - Oct 2013
From: jacqui.c
Date: 15 Oct 13 - 03:29 PM

Wise words Spaw.

Love to Tom.

Subject: RE: BS: Curmudgeon In Hospital - Oct 2013
From: catspaw49
Date: 15 Oct 13 - 12:56 PM

For medically challenged folks with multiple problems, everything is a balancing act. At some point it is driven home to them that they will never have a day as good as what they used to have and that today is as good as it gets. The challenge then becomes to enjoy as best one can what every day offers and not to be chagrined over the fact that time is now quite finite.....as it always has been though we never want to face it.

Address the day and not the diseases which have come with it. Do what you can to make things better but don't let that cloud the ability to make the most of each day and each other.

Best Thought from Ohio.........


Spaw

Subject: RE: BS: Curmudgeon In Hospital - Oct 2013
From: Janie
Date: 15 Oct 13 - 11:11 AM

Y'all are a good team, Linn. Continued good thoughts for both of you.

Subject: RE: BS: Curmudgeon In Hospital - Oct 2013
From: Stilly River Sage
Date: 15 Oct 13 - 11:08 AM

That last one was just like an old-fashioned telegram, wasn't it?

Linn, the struggle to gain more time sometimes results in a death by inches. I just watched two friends go through health crises - choosing the quality of remaining life is (in hindsight and in my opinion) the much better choice. I'm adding this to confirm what you've already said - there are real choices out there. Good luck to both of you in wading through the morass of medical opinion.

Maggie

Subject: RE: BS: Curmudgeon In Hospital - Oct 2013
From: GUEST
Date: 15 Oct 13 - 10:41 AM

DEAR TOM AND LINN THANK YOU SO MUCH FOR LETTING ME KNOW ABOUT TOM'S HOSPITALIZATION PLEASE KNOW YOU ARE BOTH IN MY THOUGHTS AND PRAYERS AS AN OLD R.N. I AM A BIT CONFUSED WHY CAN'T TOM HAVE HIS OWN TRUSTED DOCTORS??? I WILL TRY TO VISIT TOM BUT DO NOT WANT TO TIRE HIM OUT PLEASE KEEP ME IN THE LOOP MY LOVE TO TOM AND MY SUPPORT TO YOU PLEASE CALL IF YOU SHOULD NEED ANYTHING CINDY

Subject: RE: BS: Curmudgeon In Hospital - Oct 2013
From: AllisonA(Animaterra)
Date: 15 Oct 13 - 09:32 AM

Sending light and love and hope for wisdom and strength. I'm going thru similar with my mum, but she's 87 and has lived a grand old life.
Big, big hugs, my dear.

Subject: RE: BS: Curmudgeon In Hospital - Oct 2013
From: wysiwyg
Date: 15 Oct 13 - 07:20 AM

+++(((Linn & Tom)))+++

~Susan

Subject: RE: BS: Curmudgeon In Hospital - Oct 2013
From: GUEST,kendall
Date: 15 Oct 13 - 07:18 AM

This makes me so sad.It's what took my friend, Utah, and I don't like it a damn bit.

Subject: RE: BS: Curmudgeon In Hospital - Oct 2013
From: GUEST,DFF
Date: 15 Oct 13 - 07:11 AM

Sending positive thoughts your way. What an ordeal.

Subject: RE: BS: Curmudgeon In Hospital - Oct 2013
From: billybob
Date: 15 Oct 13 - 06:09 AM

Just sending much love to you both from Billy and me

Wendy
xxxxxxxxx

( and take care of you Linn xx)

Subject: RE: BS: Curmudgeon In Hospital - Oct 2013
From: mouldy
Date: 15 Oct 13 - 05:18 AM

It's all about quality of life for you both now, and as been said, getting the most out of how much time you have together.
His tenacity can't be questioned, so here's to Tom and his fighting spirit - long may it serve him, and you too.

Meanwhile - Carpe Diem!

xxxxx

Subject: RE: BS: Curmudgeon In Hospital - Oct 2013
From: GUEST,Justine
Date: 15 Oct 13 - 05:02 AM

Linn - so sorry to hear what you and Tom are going through. Just hoping for the best for you both.

Subject: RE: BS: Curmudgeon In Hospital - Oct 2013
From: bbc
Date: 15 Oct 13 - 01:06 AM

Just checked in. So sorry to read of all these complicated issues. Sending sympathy & prayers for strength from New York.

Love,

Barbara

Subject: RE: BS: Curmudgeon In Hospital - Oct 2013
From: Jeri
Date: 14 Oct 13 - 11:16 PM

Linn, I wish I could say something helpful. Mainly, I can be here to listen. I hope the cats let you sleep.

Subject: RE: BS: Curmudgeon In Hospital - Oct 2013
From: ChanteyLass
Date: 14 Oct 13 - 10:26 PM

It looks like I'll be able to give you those real hugs pretty soon. I am glad that you are getting some answers even though they are still somewhat vague. It sounds like you are latching onto a Seize the Day attitude, and that sounds like a good idea. Whatever you do, Keep Breathing. Tom, too! I hope Tom does indeed come home soon. Until I can give you real hugs, I'm sending more of the virtual kind.

Subject: RE: BS: Curmudgeon In Hospital - Oct 2013
From: Sandra in Sydney
Date: 14 Oct 13 - 09:28 PM

I'll second that

sandra

Subject: RE: BS: Curmudgeon In Hospital - Oct 2013
From: GUEST
Date: 14 Oct 13 - 08:36 PM

Jim, our feelings, too. Tom's tougher than his doctors realize. Each day is another day to enjoy -- but this is a reminder not to waste any.

Linn

Subject: RE: BS: Curmudgeon In Hospital - Oct 2013
From: Nancy King
Date: 14 Oct 13 - 08:03 PM

Sobering thoughts, Linn. My thoughts are with you both for the best possible outcome -- for a long time!

Subject: RE: BS: Curmudgeon In Hospital - Oct 2013
From: MaineDog
Date: 14 Oct 13 - 08:02 PM

For what it's worth, none of us can see the future in any depth, not even doctors.
My wife Gail was given six months by her doctor, but she lasted 40 months. Of course, they were right, saying that she would die. But we had lots of unexpected good times! We felt blessed, and dare I say lucky?
So enjoy each new day, and don't count them!
Jim B.

Subject: RE: BS: Curmudgeon In Hospital - Oct 2013
From: Bat Goddess
Date: 14 Oct 13 - 07:48 PM

I did get some answers today... My primary question has been, How worried should I be? (Or rather, how IMMEDIATELY dire is the prognosis?)

Well, he's NOT going to get "better". His heart function is back down to about 20% as it was before his valve replacement in 2004. Why he doesn't LOOK or ACT more ill is because for the past few years he's been nowhere as active is he had been in 2004. He's had congestive heart failure for over 10 years and it's complicated by his coronary artery disease. I was having trouble understanding how everything could be fine until all of a sudden, it's all gone to shit and it was explained to me that the balance in Tom's body is delicate. When it falls off the edge, it does so very fast.

What the plans and options are, I may actually find out from the doctors concerned tomorrow. Today I only talked to the pulmonary guy for a few minutes and then, Tom's primary care was there (visiting another patient, but he stopped in to review Tom's information and visit with us) so he really didn't say much.

Tom had said this morning that one of his doctors was talking about a different kind of defibrillator -- and his nurse gave me more information about that. Instead of a defib/pacemaker only controlling one side of the heart, it would be one that would control both sides. And the rest of the care would be palliative.

The good news is I DID get to talk to Tom's primary care doctor who has been treating him for about 10 years. And I trust him. But, ya know, NONE of these doctors want to say, "Hey, he could keel over dead next week...or maybe it won't happen for a couple months...maybe years..." One thing agreed on is it is highly unlikely that Tom will tie his cousin's longevity -- she's 93 and still going strong. And the doctor was willing to say Tom isn't likely to live, say, another 10 years. But the lot of them really don't want to be tied to a prediction. (Or be the bearer of really bad news.)

This episode really has been a poke to remind me there IS a clock ticking; we don't have the luxury of "forever" or even years. Stop wasting time; do stuff NOW. NOW is the time to get Tom to teach me his "Anglo-Saxon crash-thud" guitar style. Nail down some facts in his history that need to be clarified and no one else can.

This all really isn't a surprise. But a reminder to be more mindful of the passing of time, the shortness of life.

I've got to go make some phone calls...

Linn

Subject: RE: BS: Curmudgeon In Hospital - Oct 2013
From: gnu
Date: 14 Oct 13 - 11:45 AM

Any chance you can tell them they must consult with Tom's regular doc(s) first?

Subject: RE: BS: Curmudgeon In Hospital - Oct 2013
From: Bat Goddess
Date: 14 Oct 13 - 10:41 AM

Did I mention earlier that Tom can, indeed, have visitors and phone calls and that the phone number of the Critical Care Unit is 603-740-2294?

I spent most of the afternoon reading to Tom yesterday ("Gastronomic Me" by M.F.K. Fisher) and then later in the afternoon visited some friends closeby for R&R, beer, and puppy cuddles and face licks. Then I went back to the hospital to say goodnight to Tom. Talked to the cardiologist at that time -- he's been reducing the amount of whatever drug they've been giving Tom to boost and stabilize his blood pressure to ween him off it, and says he thinks Tom may be released in a few days. Tom was looking forward to some ice cream when I left.

Tom's been actually feeling FINE all the while. He looks good, sounds good, and is in surprisingly good spirits, though he'd really like to go home.

Meanwhile, I haven't yet been able to talk to my advisors to get their take. Keep in mind none of Tom's doctors at the hospital have known him for more than the past couple days and don't have any real history with Tom. I've gotten some inconsistent answers, and I'm not really sure how much I trust them. I'm not even sure exactly how worried I should be. I KNOW I'm more worried than when Tom had his heart surgery in 2004 -- but then I was just so relieved that he was getting medical attention (he was under-employed, had no health insurance, we had no savings, I was unemployed, and he was really really sick and I was frantic) and then I was too busy being on my knees begging for assistance from every agency around (and providing them with photocopies of every piece of paper in our lives) that I didn't have TIME to be worried.

Well, I AM worried now. They've also said his heart function is much lower than it's been (although he's looking, feeling and acting much better than the numbers would indicate -- see why I'm confused?) and, this morning Tom said that the doctor said they might try a different defibrillator. Again, I'll have to talk to the doctor for more information when I get to the hospital -- which I really have to do so I've GOT to get dressed and get out of the house.

Later,
Linn

Subject: RE: BS: Curmudgeon In Hospital - Oct 2013
From: GUEST
Date: 13 Oct 13 - 07:30 PM

So, I am going to try Dragon naturally speaking. I am using Windows 8. I think this version of Dragon naturally speaking is 12. It works. Submit message. I'll figure that out.

Subject: RE: BS: Curmudgeon In Hospital - Oct 2013
From: Stilly River Sage
Date: 13 Oct 13 - 01:07 PM

Here's hoping all of these doctors get back to you soon so you can weigh the options. I'm glad you got out to the musical evening!

SRS

Subject: RE: BS: Curmudgeon In Hospital - Oct 2013
From: GUEST
Date: 13 Oct 13 - 12:36 PM

Hoping for the best but will settle for better.

Charlie and Judy, still in Sacramento

Subject: RE: BS: Curmudgeon In Hospital - Oct 2013
From: RoyH (Burl)
Date: 12 Oct 13 - 05:37 PM

More hugs and thoughts from the Harris family.

Subject: RE: BS: Curmudgeon In Hospital - Oct 2013
From: Mrrzy
Date: 12 Oct 13 - 04:55 PM

Many thoughts for both of you!

Subject: RE: BS: Curmudgeon In Hospital - Oct 2013
From: ChanteyLass
Date: 12 Oct 13 - 10:24 AM

I'm sending you both virtual hugs for now and hope some day to give you real ones.

Subject: RE: BS: Curmudgeon In Hospital - Oct 2013
From: gnu
Date: 12 Oct 13 - 06:09 AM

"I think I'm feeling less frantic and a bit more at ease. (For what that's worth.)"

A lot!

Subject: RE: BS: Curmudgeon In Hospital - Oct 2013
From: open mike
Date: 12 Oct 13 - 04:12 AM

Sending healing thoughts for Tom and energy to Linn as being a care giver can be stressfull. It is so important to have you as an advocate to help with sending medical history reports, and co-ordinating the different specialists...so hang in there, both of you!

Subject: RE: BS: Curmudgeon In Hospital - Oct 2013
From: Megan L
Date: 12 Oct 13 - 03:16 AM

Lets hope things continue to improve and they find the actual cause so they can hopefully prevent it in future

Subject: RE: BS: Curmudgeon In Hospital - Oct 2013
From: Bat Goddess
Date: 11 Oct 13 - 09:55 PM

Things were better when I got to the hospital. I found Tom sitting up in a chair and, for the time being at least, his BP seemed to be stabilizing. He's in good humor, still feeling quite well, very alert and not as bored. Yesterday he ended up listening to the History Channel, so even though it's not his favorite -- NHPR -- he's still getting something to keep his mind occupied when I'm not there to read to him.

He can't have any food as they don't want his stomach and lower GI to steal blood from his heart, kidneys and brain.

I read to him most of the day -- online articles that I printed out plus a few more chapters of M.F.K. Fisher's "The Gastronomical Me" from "The Art of Eating." That got him thinking somehow about making an orange upside down cake so we discussed modifications to a pineapple upside down cake to experiment with sometime when he gets home.

Had a pretty decent talk with his doctor (well, I guess one of them -- I haven't met the cardiologist yet). He's more or less narrowed it down to his heart, but Tom's been dealing with congestive heart failure for years. Why things changed so suddenly and in ways he couldn't tell it was happening, I still haven't a clue. I still need to talk to a couple advisors -- an old friend who's a doctor (and was actually Tom's doctor before his heart surgery) and his cardiologist of the past 10 years. Also told Dr. Al-Alwan that Tom's cardiologist sent some of Tom's history over to him, so he'll go look for the information. (Why did didn't REQUEST it, I have no idea.)

I think I'm feeling less frantic and a bit more at ease. (For what that's worth.)

I "was Tom" at tonight's Press Room session, sitting in Tom's seat and making sure everyone got a chance to lead a song. And collected a bunch of much needed hugs (which are much better in person than as cyber hugs, although those are appreciated, too.)

Right now I think I should go to bed.

Linn

Subject: RE: BS: Curmudgeon In Hospital - Oct 2013
From: ChanteyLass
Date: 11 Oct 13 - 08:36 PM

More hugs, love, and prayers from here, Linn.

Subject: RE: BS: Curmudgeon In Hospital - Oct 2013
From: gnu
Date: 11 Oct 13 - 07:21 PM

Frustrating as all get out! Hang in there... BOTH of you.

Subject: RE: BS: Curmudgeon In Hospital - Oct 2013
From: GUEST,Lauren
Date: 11 Oct 13 - 04:51 PM

Sobering news. I am wishing you both strength and healing.

Subject: RE: BS: Curmudgeon In Hospital - Oct 2013
From: Bat Goddess
Date: 11 Oct 13 - 10:28 AM

Heading over to the hospital. Haven't been able to talk to any of my advisors (although I talked to Tom's cardiologist's nurse).

I will be at the Friday Press Room session (being Tom, so to speak) at least for the early part.

I would like some reassurance that either a) Tom's being in the CCU is right and good or b) that my wanting answers and reasons and more advice is keeping Tom from getting set back just by the inactivity of being in a hospital bed with more tubes than Carter has pills coming out of him.

He still FEELS fine!

But this morning I think I averted a crisis. When I called he said he really needed to cough but couldn't because he couldn't sit up. I called the CCU back and had them get a nurse in there so Tom COULD cough. Cough suppression is what landed him in the CCU last February (pneumonia) sedated and on a vent.

I'm TRYING to keep them from killing him!

Linn

Subject: RE: BS: Curmudgeon In Hospital - Oct 2013
From: Jeri
Date: 11 Oct 13 - 09:56 AM

While both doctors' confusion and Tom's bad circulation are nothing new, I hope they can figure out how to help him. Perhaps it might take a discussion with his cardiologist. (Not telling Linn anything she doesn't know--just being here and blabbing.)