Voicelessness and Emotional Survival > Voicelessness and Emotional Survival Message Board
PR's new saga...
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.
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