PR's new saga...

[teartracks]

PR - Much love and prayers.

tt

[lighter]

The bonfire's burning, sKep....

we're here for you.

Light

[sKePTiKal]

I haven't had time to update. We've come home from hospital (again) to absolutely nothing by mouth, tube feedings, a medi-port for chemo... and a month's time to get him strong enough for chemo. He's starting to normal his potty functions, but for now we're still changing him and the hospital bed, even through the night. His D, Autumn, has stayed. Hol was here, and is tag-teaming with her SO, the coming week.

I'm trying to hire in a night nurse so I can sleep, and even have a little downtime in the evening; a chance to pull the floaty parts of my brain together in the morning. First day home - I was first up, and I simply could NOT do what was needed. I'm learning.

New problem: dealing with all the people who want to help and who don't realize how much more work they make - that our "schedule" is his needs, no ifs ands or buts... and that it's all undignified, they may not be able to stomach some of the things we have to do for him, and he still doesn't have much voice, to "visit" with people. It's quite the shock for people to see how much weight he's lost, there's the O2 cannula and constant hum, there are emotional moments when we're trying to understand what he wants (and sometimes having to tell him no - he can't have a drink because he can't swallow correctly and we want to make sure he doesn't aspirate the liquid into his lungs)... and on & on.

Poor Holly was all gung-ho to help with the pile of clutter that's being sorted & purged, a little at a time... and I had to just stop her because some of the stuff I'm going to "hand off" to others needs my eyes on it (paperwork for various things). I don't even have a plan yet to deal with that kind of thing - because every day is a new adventure and my routine is topsy-turvy or just gone. I'm trying to force the adjustment so we meet the goal of stopping the weight loss, getting him to participate in his own care/want to get better, and be eligible for chemo or radiation in the next month. And still remember to take care of myself.

I have a few odds & ends for her man to help with - but it's not like I can keep him occupied all day either. Then, there's eating... and lord, all the rest of his family are wanting to pray over him, remind him how many others have died of cancer, express their sorrow that this horrible, awful, terrible thing has happened to us. The new symptom mgmt doc says those people don't get invited back. She prescribed a low dose celexa to help him sleep, and Autumn & I tried a half a painkiller in his night feeding and he is starting to finally rest instead of keeping a nighttime vigil. We've been getting him dressed and up, sitting in a wheelchair for an hour or two at a time. Trying to restart the basic hygiene stuff in his head and give him back some dignity... and self-care.

A: he isn't strong enough to withstand the cancer treatment, right now. We have a month to see how strong he can get; a feeding plan; speech & occupational therapy. The doc laid down the law to him, and said I'm in control - and he can't tell me no when it's time for meds or food, or to get up and do a little for himself. I'm liking her; and she definitely "heard" me about those needs he had that weren't physical.

B: he isn't on death's doorstep, in a wicker basket -- YET. As desperate as the situation is, he needs to just "live" today... make jokes about what his life consists of, and find things to do to help convert his calorie intake to muscle. He doesn't get to use being a very sick boy, to get even with me, for being the "nasty nurse" that tried to make him take all the yucky medicine either. Dr. P is really good about the small, concrete steps that have the best chance of getting him strong enough to go through the treatments. And he's not allowed to withdraw into his shell from me, or Autumn, or anyone else either... slowly fading away... with this approach.

Much to do today, again.  

[lighter]

sKep:

Well, it sound like this doc is on board with strategies to carry out your plan to strengthen and motivate dear M.

You sound energized by having a plan, and concrete actions you can take, step by step.

I'm hoping and praying that M finds the strength to latch on to this good plan, and do what he can to strengthen and fortify himself, find some humor and gut his way back to healthier days.  I think his participation will certainly strengthen you.

Your vision of how this should go is comforting to me, btw.  I bet M feels the same, even if his current state makes it hard for him to appear more grateful.... surely he's comforted by your on top of things proactive activity?   

Glad to hear the update.  Wish I could help you marshal all those volunteers.  Maybe a sign up sheet so folks could sign up for the things they're comfortable with?

Some will be good and chipper with hands on hygiene needs, and some will be better at laundry, and general tidying, running errands, replacing flowers, etc. 

Sending you strength, courage, and enduring ability to find humor....

Light

[sKePTiKal]

It has occurred to me that there is yet more of "Twiggy's Saga"... because in all that happened, she also suffered the loss of her Dad from her life. But mourning that loss was most definitely verboten around her mom.

Now is not the time to dig into that; but it's something I've been aware of for a couple of years.

I have a night nurse now. Means I can sleep and get up and have some time in the morning to see if Twiggy has anything bugging her. And to just float through the emotions and relieve a lot of that pressure. I thought perhaps my "list" was shrinking and getting under control yesterday, but I still feel like I never really had time to just collect myself. I've invoked the Long Term Care insurance to help cover the nursing costs; it was by far the easiest, most efficient admin bit of the process to date. So far, anyway.

My guy in charge at the shop, is kind of doing the same thing with his father in law; they're travelling to Florida to get some first-hand observation and have some straight forward discussions hopefully leading to decisions. Seems my weekly calls are now monthly calls - LOL. Holly & Matt are here this weekend; the kids changed my hair appt to Sat and added a massage. The way I feel right now, wish they could've fit me in today... This will be the first time we try to travel with Mike in diapers and it dawned on me that they don't have adult-size changing tables where I could roll him, and work from either side. My nurse says to try to change him standing up. I know how that's going to go; I've got maybe 60 seconds before his knees start to give out. Fingers crossed ladies!! 

[lighter]

sKeP:

I don't understand where you have to change Mike, but I don't need to.... you can't have him falling, breaking a bone, or hitting his head wherever you're going, IMO.  You don't have enough hands to keep him standing, and change him,  if you think he's doesn't have the strength to get through that process.

Can you consider rolling up a camping sleeping mat, and taking it with you?  I've used the blue throw away sheets with plastic on one side before.  Maybe the nurse can set you up with some of those?  I'd rather you helped Mike gently to the floor, and changed him from both sides, rather than have him fall on a dirty floor injuring himself.

You're a strong person, ((Amber.)) 

I'm praying for you.

Lighter

[mudpuppy]

Hi Skeptikal,
I don't read the board too often any more so I didn't see this thread til just now.
I won't give you any advice since you seem to be doing better than most already.
You seem to be doing what everyone does, which is learn as you go because even someone who has been through it isn't of much use considering how different every person's path is.
I never saw where you mentioned the results of the PET scan. Is it contained to his lung or has it metastasized?

I will say, when the appetite disappears we can want them to eat all we want but they just can't. I don't think it's  that they won't. It's just not a function that their body undertakes any more.

If you want to PM me you can. If not of course that's fine too.
God bless you and your husband.

mud

[sKePTiKal]

Hey mud... how ARE YOU? I haven't been here a lot either, but as you can imagine my stress levels have been out the roof and those old mental/emotional habits just love to take advantage of that and start popping up. You're right; he simply could not eat - it wasn't a matter of will. We've been tube feeding him for 13 days now. His swallow reflex is a mess, since losing so much muscle mass - and he silently aspirates too. Means he won't cough if something goes down the wrong way - and that creates a huge risk for fluids in the lungs. He asked for orange juice yesterday; and I teased him with bacon, country ham and biscuits & gravy this morning. Emailed the doc to ask (first, if I'm rushing things... based on just one request and no speech therapy yet) if I could tell him he could have sweet potato puree or mashed potatoes next week. Something to look forward to, you know?

His O2 levels go bonkers on me, for what appears to be no reason. I even had the tech out to check the the concentrator. Some days he'll be very coherent and his old self. Others, he'll keep taking the oxygen off and when I ask him why he says things like: I'm leaving... you have to go get ready. And I have to tell him, no; we don't have any appts for awhile. I have to tell myself not to read into those kinds of comments... but there is always a question in my mind about them.

I have a CNA every night of the week now, so that I can sleep without one ear open... and ready to jump up for any reason. My kitty is still discombobulated and despite always being meticulous about her box manners -- now prefers leaving me presents under my bed where she hides out most of the time. We're figuring out the "new normal" around here - but I do know that it will change as soon as I get used to it. Either he'll start going out once a week for chemo (and the trip alone will exhaust him) or he'll still be losing weight despite the feedings in which case we'll move to the hospice stage. Last Friday, was a full week of tube feeding and he'd still lost 3 lbs.

I'm going to schedule a 4 hr block of CNA coverage during the day too, with an optional 2 hrs additional so I can run errands, work downstairs & outside without depending on family & friends. I'm still a hermit and homebody - so it's not like I've got cabin fever - but there are things I have to do. I have SEEN him try to get out of bed by himself... and I can't trust him to not try that again; he can't stand on his own.
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So, to connect this situation to my Dad. There is one agency here that sent me into total Twiggy melt-down with their incompetence and insensitivity; it's not someone our hospital team would normally use and the case mgr said if they continue this way, we can switch to the local home health group. It was the insurance company's preference. But the silver lining in that experience, is that Holly was here and we talked it out to the miniscule analytical details of mental BS... until I connected up the dots. I felt like I was losing hubs to the whole medical monolith; that decisions were all out of my hands... that they were taking him away from me. And I didn't trust them, if they were that incompetent. (It's just that one home health group - everyone else I'm dealing with a huge improvement over the big-city docs and nurses.)

It's similar to the feeling of watching my Dad leave, because of my mom's crazy - and the helplessness I felt at that age and overwhelming sadness.

I wish I knew how I ever connected that kind of grief with love; the yin/yang of the two emotions... which are probably the same wavelength in the universe's frequency range. And I'm a little mystified that other people can only see the one - without the other. They see sadness and want to fix it and that's wrong!! It's akin to trying to stop people from loving. You simply can't have one without the other. It's impossible in this particular space-time continuum. Sadness will run it's course - and be punctuated with other emotions too - when it's healthy, I guess. Sadness isn't the same thing as depression.

I'm hanging in there. It's important that I don't prevent people from "helping" because the reality is, that this "help" is extra work or tiring for me; they have feelings too to process. I need to rest and completely let go... and let other people do. (There is real serious strong resistance to that idea, but it's important to my being able to keep on, keepin' on...)

[lighter]

sKeP:

How are you guys doing?

hhaw

[sKePTiKal]

Blech.

Docs are fussing over his high white blood count - oncologist wants to send him back to big city hospital for his 2nd bronchoscopy in 2 months, to look for post-obstructive pneumonia. Again. Symptom Mgmt doc, my nurses & the speech therapist all recognize how weak he is and therefore intolerant of any travel and even the slightest physical activity. It's exhausting for him to be changed or given a bath in bed.

I think oncologist is probably right. There is a pneumonia going on. But to treat it runs the high risk of sending him into his last downward spiral -- and it will be quick. Too much CYA going on to be able to say: we did all we could... when there just isn't going to be much benefit, it's a "false hope" for hubs -- who after an hour finally said he would go back and have the tube down his throat and the surgery. I think they're just buying time and he's all out of it, and STILL in denial and refusing the little things that would really help him feel better (toothbrushing and medication for thrush). Chances are, the variety of pneumonia is some sort of candida.

And that means I have a 3 hr commute again to the big city -- where everyone is on alert for terrorist attacks on "soft targets"; like hospitals. That's assuming I can get medical transport without calling 911. They close for Thanksgiving. I'm not afraid, mind you. It's just that my patience and energy levels are getting low. I'm seeing the old grief avoidance behaviors raise their heads again; being busy for the sake of being busy and on nothing that important. And since there's a lot of "house" business going on this time of year that is important - I'm getting all bent out of shape about that, because it feels like "piling on".

SIGH.

Releasing outcomes (hops, that was still the best lesson!) and just putting one foot in front of the other.

[Hopalong]

Oh, hon. I'm so sorry. I can visualize how exhausting and draining this is...with so little time for you to tend to Inner You.

Pneumonia has always been called "the old man's friend."

I know your hubby isn't old, but does he want all invasive treatments at this point?

Home with hospice comfort treatment (palliative care), and with pneumonia, would be such a gentler way to go.

Have you talked to hospice yet? Or asked Hubs or doctors about it?

love to you,
Hops

[lighter]

Amber.... so sorry to hear M is getting weaker.

I can't imagine how difficult that is for both of you. 

If you're having trouble talking to M about Hospice, bc it sounds scarier than he's ready to face, then maybe he can be evaluated without using the word HOSPICE?

The nurse can just be another nurse to help you out?

Does M have IV fluids going right now?  If not, that may be a major cause with lack of energy.  It certainly was for my Mom. 

Careful attention has to be paid to the lungs, watching for fluid build up, but it was night and day difference in quality of life for Mom, not life sustaining.  Just life improving comfort, and the ability to be present, which was so important to Mom.  She was very busy up to the last.  She had her sense of humor to the end, and we all valued that time together.

You already know about the calming creams, and oral pain meds likely so won't talk about that.  They were such a comfort to have on hand, bc we didn't know what we'd need hour by hour.

((((Amber and family))))  Whatever you do,  you'll make sure it's the very best choice for M, I know.

Lighter

[Meh]

Wow this has all evolved so quickly.  Now he has the feeding tube going on.      

It sounds like you are doing the best you can do with the resources you have near you.

It's too bad they couldn't do an alternative procedure locally for diagnosing the pneumonia.

Well I think the standard that I have heard of for a healthy person is to take medication for one to two weeks for pneumonia.

Since he is unwell perhaps it would take four weeks to get over the pneumonia if he is medicated for it. Hopefully it won't be a very long infection.
I don't really know but I would think doctors should be able to give some standard guidelines for how long all of this is going to take.

I wonder if he is allowed to have acidophilus in with his food. In theory it could help with thrush



 

[sKePTiKal]

Well, Amazons... it's all over.

He started coughing, I sat him up in bed and tried to get him to spit out whatever he was coughing up - and then he vomited the last 3 feedings everywhere. In the process, he started taking very long slow deep breaths... and I ran for the phone to call 911. EMS was here in about 10 minutes, but he'd already stopped breathing. They labored over him for 20 minutes, because when they asked for health POA, I handed them mine instead of his.

It was unexpected; wasn't a thing anyone could've done; and in a way - I'm relieved that his struggle is over and he doesn't have to face the additional invasiveness of more medical "intervention" in the natural ending of life. I'm really sad that - for whatever reason not communicated to me - he didn't accept that he was ill, and seriously, a long time ago. But we can't decide those things for other people.

The girls will be here later today; Autumn wants to see her Dad one last time and I'm trying to give that to myself as well. I normally avoid that particular abyss of emotion - of poking myself in the eye with a hot iron - of "grief rituals". It was hard enough putting his childhood teddy bear away that I got out for him a couple of days ago. But I knew better than to leave it where I could see it. I did see him during the whole process of trying to revive him, until they brought out a bone drill. But I knew that he was beyond retrieval at that point. I was holding him when the door opened and whoosh... he went on through it.

Today, I get the bunny hat out. Once my crew gets here, takes over, and I can "stand down". Would it be silly to wear it when I meet with the funeral home people?     It's REALLY tempting, since I've answered the question: are you alright about 50 million times already... and I know that onslaught isn't over. I've had months to realize and emotionally accept how this situation was going to end. I already kind of "knew" that he would be leaving over the past couple of years, watching his stamina decline. I was starting to work on increasing mine and couldn't convince him to do the same, doing things that were enjoyable for him. We are all different, after all.

He got me the bunny hat during the whole Amy debacle a couple of years ago. It meant that I couldn't talk, just cry; and there wasn't anything anyone could do except let me do my thing until I stopped. It was a signal, non-verbal sign... like he always wanted from me, to know when it was "safe" to talk... sigh. I never could get him to understand how my attention splits, and a 3rd thing just causes my brain to reboot... which registers on the lizard brain as a "threat"... oh well.

[Dr. Richard Grossman]

Dear PR,

You managed the unmanageable as well as anyone could.  Know that you are in my thoughts.

Hugs,

Richard