Or opium bed!
StG
When I was having all of my kidney surgeries and had a stent in I found sleeping in a recliner quite nice. I couldn’t use a pillow but a rolled up towel under my neck sufficed.
My husband said something about wanting to go shopping for this new bed, test-laying on it… uh, right. :rolleyes: It’s more for me than for him, he gets the big bed with the fancy mattress.
Anyhow, although he still says he feels like shit his color is better and he’s sounding better. Also, the gunk draining out of his bladder (yeah, TMI, sorry) has stopped looking like blood and clots and is looking like urine again. If the latter is an effect of the chemo attacking the cancer I must say it’s a dramatic change. The docs have been very, very, very cautiously optimistic that this is a Good Sign, emphasizing that it is far too soon to be sure… but… yes, he seems to be showing possible indications that the chemotherapy is working as we would like it to.
The fact he is NOT getting worse, when he’s been on a steady decline since mid-November, is also a good sign.
So… very very very very tentatively and cautiously… there may be some good news.
Still four months of chemo to come, though.
I’m glad he is on an upswing, **Broomstick **
I’m late to the thread, Broomstick, but allow me to say how sorry I am that your husband was afflicted. On the other hand I’m delighted that you have some hopes of his improvement now. If we know one thing about cancer it’s that it can and has been beaten many times. My thoughts are with you both.
Yay! So happy to hear this tiny hint of good news!
Not so much an upswing as a leveling off of the downswing.
He did say he was able to eat more today.
Now the social workers/rehabbers/case managers seem to want to get involved, but on THEIR terms not OURS.
There’s the marriage issue - there seems to be a lack of comprehension that there is a marriage here. “Who will take care of you at home?” “My wife.” “You have a wife?” Seriously, that exchange has occurred more than once this week. Yes, disabled people have spouses. People with cancer have spouses. Disabled people with cancer have spouses. Is it that hard to grasp? “Who will drive you to appointments?” “My wife” Yeah, the wife who got FMLA at work specifically for that sort of thing. Also several friends have volunteered to help as their schedules allow. And our insurance will pay for at least 10 round trips for medical transport (maybe more - we’re working on that).
Last time an unvetted housekeeper type was here I almost lost all my copies of my published writings - “Oh, sweetie, let me get rid of these old magazines for yo–” OMIGOD NO NO WAIT STOP!!! Seriously, the fact that they were all in individual protective sleeves and a solid case didn’t tip you off that maybe these were considered valuable by the household? And the husband remembers times when his stuff was ripped off while he was in the hospital when he was a kid. The prospect of strangers in our home fills us with dread, and I’ve already arranged for two friends to come out and help me do that sort of thing.
Then there’s the shower issue - “you need a shower chair! How will you manage in the shower?” The interior of our shower has a grab rail that goes around the three solid walls enabling the unsteady to hang on. The landlord installed it years ago. The floor of it is non-slick. He can ask his wife (remember, he has a wife) to help him. Or, you know, sponge baths (actually, “cleaning cloths” these days) like what he’s been getting in the hospital. Which he has mostly been doing himself out of choice.
“How are you going to manage food?” You mean, when he actually eats? Well, the wife (remember, he has a wife) could make a plate for lunch for him when she’s doing her box lunch for work. Oh, and she’s home for breakfast and dinner. And he has friends. This is a guy notorious for opening a can of peas and eating them at room temperature, he doesn’t require gourmet cooking (in fact, room temperature peas are one of the few foods he has managed to get down lately - what can I say? Apparently he likes peas…)
I’m leery of “agencies” and “social workers” coming in our home and judging us, and worse yet taking control away from us. Is that rational? Not entirely sure - but loss of control is a big issue for both of us from way back, based on things in our pasts that involved us being victimized by people doing stuff to us “for your own good”.
How about the damn hospital improve their own security? The little lady down the hall spent at least one night sobbing because someone stole her portable DVD player out of her room. People who steal from the sick and/or dying really need some serious punishment, but it happens all too frequently. Sure, I get it - sick/old/dying people are easy targets. That’s why it’s up to us healthy folks to prevent that shit, or punish it when it happens.
“He needs rehab to help him get out of bed and move around”. Have you talked to his nurses lately? He’s been driving them batty because he won’t stay in bed (took him about 30 seconds to figure out the code to shut off the “patient getting out of bed alarm” on the bed - he’s also pretty smart). Even on his worst day he’s made an effort to get out of bed, move to a chair, walk to the toilet. He’s not an idiot about it - he does ask for help and a “spotter” - but he already knows he needs to sit up, stand up if he can, get out of bed, get out of a chair, and move around as much as he can. Half the time I’m visiting him I seem to be helping him up or down or here or there.
He’s been doing as much self-care as he can - except for shaving. Which, I understand, will be a moot point in a week or so anyway when his hair is expected to fall out. I mean, damn, the man puts in and takes out his own urinary catheters (with the urologist’s blessings), will empty his own drainage bags if the nurse is handling more urgent business down the hall (including measuring and recording output for them), and in general is pretty self-sufficient and smart enough to ask for help when he needs it.
Anyhow - want to help us? Tell us if he needs a walker or a bedside commode and if we can get insurance to pay for it. (If we can’t, I’ll pull out our emergency toilet and have the landlord cobble together something to raise it up to comfortable height). Tell me if I need to worry about his bodily wastes going into the septic system after chemo (still haven’t got an answer on that one, and I’ve been asking even since I saw the precautions the hospital takes) and if so, how do we deal with that?
Anyhow, I suppose having the energy to worry about that means there are any more significant crises going on.
This link from the EPA talks about about septic tanks and chemo.
If you need medical “equipment” like walkers, commodes, stuff along those lines, do a search on your town for Nurse’s Lending Closet. My town’s was invaluable for that for both my MIL and then for me after my back was broken. I WAS working when I asked for their help, and that didn’t matter. They could maybe help with things like that. No cost, too.
I did a cursory search for Gary Indiana Nurse’s Lending Closet and Google returned a bunch of resources, including other agencies (Catholic Charities for one example) that may also be able to assist.
Additionally you might want to check your town, township, and county websites for assistance for household stuff - mine all offer different programs that basically provide free assistance by teens who volunteered for community service type positions who will do repairs (small), cleaning, laundry - that type of thing. One of my friends was laid up due to esophogeal cancer and her wife with CPD and because they couldn’t keep up their apartment, were facing eviction. Their township sent in volunteering HS kids to get the place right and they managed to pass inspection. She wasn’t making a bunch of money either.
Eek :(. I just now spotted this thread.
Crossing fingers that the treatment really is knocking things back.
And, jumping on the bandwagon to say that a daybed would be a great solution to your needs. The frames can be fairly reasonable so you can splurge on a really comfy mattress for it, and some nice cheery covering / pillows to perk the room up.
Thanks for the tip, Missy, I’ll keep those in mind.
That’s still a problem of people we don’t know in our home. Sometimes you don’t get a choice about that, but I don’t think we’re there, yet.
Granted my spouse is both disabled and debilitated right now, and the landlord is still recovering from a serious arm injury (but making progress), I’m not disabled and I’m already doing the small home repairs. Got the laundry problem dealt with, and my sister in Buffalo has sent us some money to help with some of the increased household costs. Not a huge amount, but enough so I can cover the basic bills and not go crazy.
Probably the biggest problem is getting the house cleaning under control, but a couple of able-bodied friends are going to help me about with that in a week or two. Meanwhile, I’m managing to get the really basic stuff - kitchen, bath, bedroom - under control. The problem is the clutter and getting paperwork organized and moving furniture.
Part of it is just adjusting to my having to do everything - for years we’ve divided up the chores. Car maintenance, for example, was his responsibility. I certainly do know how to maintain the vehicles, but now I have to fit it into an already busy schedule instead of saying 'Honey, could you…?". That’s also half the bills, getting the mail, minor home repairs, dealing with wildlife (like mice) that get into the house every now and again, all the shopping instead of just some of it, emptying the routine garbage (I’ve always handled anything heavy), computer maintenance… I’ve taken to writing down all these tasks so I don’t forget them because I haven’t been used to doing some of them.
It’s not that I object to help, it’s just that what other people think we need may not be what we need. The rehab folks were talking about evaluating our bathroom and installing a shower chair and so on… well, we already have grab bars in the bathroom. We don’t need information on installing a wheelchair ramp for our home because there are absolutely no steps or ledge anywhere in it, we don’t need one. Our current landlord designed and built out our living space when he was caring for an elderly relative in a wheelchair The hallways are twice as wide as usual. There are no steps. Grab bars in the shower. It is already accessible. So, I appreciate the information but the rehab folks don’t seem to get that we already have some solutions in place. Just like they can’t seem to grasp that he’s actually married.
The husband thinks that in some cases they’re looking to make money - if they don’t provide services they don’t get paid. Strikes me as a bit cynical, but he’s had more experience with rehabilitation agents than I have. It’s certainly plausible.
Anyhow - husband is already muttering about what he can do when he gets home. Like run the paper shredder for old paperwork we don’t need anymore. Sort through some of his junk even if someone else winds up carrying the trash to the dumpster. Play with/talk to our parrots, who are not getting the attention they’re accustomed to right now (I’m doing my best - have one trying to “help” me type right now, and grooming my right sleeve - but they’re used to having someone around almost all day and now they don’t.) He is NOT allowed to clean their cage, though.
It’s up to you and Mr. Broom, of course, but I’ll share my experiences with home visits just as a data point.
After my mother got out of inpatient rehab for her broken hip, her insurance paid for physical therapy, occupational therapy, and visiting nurses at home.
They were very polite and professional and they didn’t touch or move anything without express permission.
What they did: came to the house and evaluated it for hazards, and took note of the handicapped access helpers (for want of a better term) we already had in place. She had a spinal fracture 3-4 years prior so we already had stuff like toilet risers, grab bars in the bathroom, a shower chair. This gave them the chance to see that we really DID have the stuff we said we did, and that there weren’t any obstacles that would cause her harm.
They made sure she had all the durable medical equipment she needed (wheelchair, walker, etc) she needed and could have wrassled with the insurance company to get her what she needed if she needed something we didn’t already have.
They evaluated her condition and got a sense of what she could do for herself. Then they set a goal for her (in her case, walking upstairs to her own bedroom) and planned out how to make that happen. They gave her exercises to build up her strength and techniqes to help deal with her epic panic attacks.
They SUGGESTED improvements. Sometimes the smallest things were most helpful, f’rex green tubing instead of clear on her oxygen concentrator so she could see it better, so less chance of getting tangled up in it. She had a pressure sore on her butt that was basically ignored by the rehab center :mad: and was causing her more grief than the broken hip. The PT recommended a brand of ointment that cleared it up within a couple weeks.
Other suggestions we didn’t go for (ie someone could have come to wash her, or a cleaning service) but we said no because we didn’t need that kind of help.
The nurses were able to monitor her vitals, do blood draws, and monitor her condition without having to load her up and drive her anywhere.
They didn’t force us to do anything, and they didn’t touch or move anything without explicit permission.
And don’t reject the shower chair out of hand; if he gets really wiped out from the chemo he might not be able to hold himself up using the grab bars. The wet wipes are OK in the short term but in my mother’s case they were drying her skin out and she started feeling sticky after a while from the resdue.
Thanks for sharing, I really mean that. I’m aware that there are many, many honest professionals out there. Some of this is us needing to deal with our own issues. I do appreciate the reassurance.
Got a call today - his cancer doc says she thinks at this point he’d be better off at home so if all goes well I’ll be picking him up later today and he’ll sleep in his own bed tonight (or at least try to sleep). He’s also eating more than yesterday.
I told everyone who might need to call me back that I was off work this morning. So they all called me back. This morning. At more or less the same time. I have just spent 2.5 hours on the phone. Not quite what I had in mind, but really don’t mind, got a bunch of stuff done/worked out/discussed so at least I feel like the time was productive.
Well GOOD NEWS! I’m so glad to hear that he’ll be coming home - I’m sure you’re thrilled! PLUS, it’s one less trip you have to make a couple times a day! 
PS - it’s also been my experience that whenever I tell some explicitly what time I will be home and for them to call then, they call while I’m out. It’s the nature of the beast I suppose (or I deal with a lot of knuckleheaded people!)
He’s home and we’re both exhausted. He’s quite weak and the trip home really wore him out.
The birds wanted to rush and greet him and then stopped, stared, and got a look like “what the hell is wrong with you?” Which is just as well because he really doesn’t need to be mobbed by a flock right now. They’re watching him from a distance and making cooing noises.
Got him into bed, got him his pain meds, and I hope he can get a good nap, that’s what he really needs right now.
I’m sure being home will be a good thing. Glad you got him back.
It turns out having him at home is more exhausting than I anticipated.
We’ve been having some trouble managing his pain.
Today was the Second Chemo Treatment.
I’m really tired and the house is even more of a mess than it was this morning. But at least the toilet is flushing again.
Broomstick, sorry I haven’t been around. I had some kind of bug kick my butt and have been laid up for nearly a week. Anyway, I’m sorry to hear it’s been rough having him home. That was the same experience we had. We all thought it would be so much easier not having me in the hospital, but it was pretty difficult. And PAINFUL. I went from all the pain meds they’d been giving via epidural and central line to oral meds and it was a difficult transition. I don’t think it’s that unusual, but you don’t hear about it much. I hope his pain is better managed soon.
I had similar experiences with the social workers, etc. For some reason, they WOULD NOT discharge me without sending me home with a walker. Never mind that we have stairs and I’d had PT on the stairs in the hospital in preparation. It was also Sunday and they had to call in a guy to assemble the thing. When we got home, we left it in the garage. A few months later I donated it to our local senior services center.
I also had a guy calling about a home check to be sure I could manage things. I have two people to help me. I never did understand that one. I kept blowing him off and he finally gave up.
For those of you who don’t read every thread of mine - here’s a crossreference to another thread with a post that could have easily gone here. Except I don’t feel like typing it twice.
I exercised my option to call in late a couple times of a week for FMLA. This enabled me to get the laundry bundled up to go to the laundromat, see that my husband got his 8 am medications and some TLC, as well as cup of vegetable juice (gotta keep fluids and nutrition going in), and the garbage bundled up ready for the dumpster.
Glad the toilet is fixed, Broomstick. You deserve a gold star, and a day off. Maybe it’s time to ask one of those people who offered to help out to come, you know, help out for a few hours?