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caregiver needs info for after RC on Monday
Hello! My mom goes in on Monday for her RC surgery. My brothers and sister are trying to think about what we will need to do after the surgery. Hopefully you can answer a few questions.
1) how long is the average hospital stay?
2) We know we will need to be there round the clock for the first day or so, but what about after that? Should we plan to spend every night with her?
3) My dad is in bad health and can barely tend to himself. When she comes home will we need to spend the night?Also, we found out something today that she failed to tell us or the doctor. SHe is having to wear a pad because she is leaking urine. Is that of importance? Do we need to let the doctor know or is it just part of it?
Thanks for being here!!!!!
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13 Replies
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worried daughter…..your mom is getting the ileal conduit which is the least invasive of the surgeries. Its good that she has strong family support.. if you have any questions at all just ask us…all of our experiences vary a bit but at least we can guide you. Pat
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Sorry about not giving all the info. My mother is 69 and will be havinf her bladder, reproductive organs, lymph nodes removed. She will not be having a bladder reconstructed but will be wearing a pouch. Sorry, I don’t know all the medical terms. Anyway, I appreciate all the answers. Surgery is Monday and I am starting to get a little anxious.
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Hi,
Having just gone through this myself, I can say I will be forever grateful for my twin daughters presence 24 hours a day for the first four nights. After that, they’d stay until about nine or ten at night, usually arriving around 9 or 10 in the morning. What did they do? Anything I needed…help me sit up, scratch the bottom of my foot…pull the blanket up when I got cold and it was at the bottom of the bed…constantly finding me ice chips. After a few nights I found they didn’t need to be there all the time and encouraged them to go get some rest (they were looking tired).
I was in the hospital for 10 days after the RC with neo bladder.
Helping your mom and dad after she returns home with housekeeping and meals will be invaluable for a week or two. It won’t be that she can’t do anything, she probably won’t feel like doing much.
Hope this helps…good luck to your mom
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Joe…not really…the stoma nurses fully educated me on how to do everything and though i wasn’t home alone..my husband was not exactly what you call handy…..i mean the toaster baffled him……so there really was no choice. He did help getting groceries and things i couldn’t do as i wasn’t supposed to drive for 6 weeks….he brought home some pretty interesting stuff!!!! The only change that was difficult for me was the bag covering the temporary drain in my right abdomen…like the ileal conduit bag….they sometimes were defective and leaked and it seemed like i needed 3 hands to make the change………….Pat
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[quote author=Patricia link=topic=1097.msg7265#msg7265 date=1186633089]
Well from a females perspective and not having anyone to wait on me…i pretty much did change all my tubes and cook my own food …just a slower pace……..and i didn’t have to wear the stockings.
You guys have it made!! Pat
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Patricia,
that is almost incredible! I would not be able to do that.
I can not imagine being home alone after they discharged me. Wow…Congratulations on making it under such circumstances.
You’re a true warrior!Joe
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[quote author=Patricia link=topic=1097.msg7278#msg7278 date=1186679572]
Its interesting to note that with women who have this done the stoma nurses gear all instructions to the patient not the husband….when a man has this done they gear it to the wives. hmmmmmm……….Pat
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Interesting indeed. When I woke up from my initial surgery for the bladder CA they tried to tell my wife how to remove my catheter. She didn’t even want to look at it. And give me a break! In medical school and residency I catheterized more than a few patients. Why would I need my wife to remove my catheter!?!
-Warren
TaG3 + CIS 12/2000. TURB + Mitomycin C (No BCG)
Urethral stricture, urethroplasty 10/2009
CIS 11/2010 treated with BCG. CIS 5/2012 treated with BCG/interferon
T1G3 1/2013. Radical Cystectomy 3/5/2013, No invasive cancer. CIS in right ureter.
Incontinent. AUS implant 2/2014. AUS explant 5/2014
Pediatrician
[quote author=Patricia link=topic=1097.msg7278#msg7278 date=1186679572]
Worried daughter….you did not mention your mothers age or what type of diversion she is getting. This may determine a lot of things.
[/quote]There are so many posters with “worried” as their prefix that I think I may have confused “Worried Daughter” with someone else.
My understanding was that her mom was 81 years old, but now I can’t find any mention of that.
Folks, if you would post such pertinent details it would be helpful.
“Standing on my Head”––my chemo journal
T3a Grade 4 N+M0
RC at USC/Norris June 23, 2006 by Dr. John SteinWorried daughter….you did not mention your mothers age or what type of diversion she is getting. This may determine a lot of things.
If she’s older and getting an ileal conduit or external bag it will be a shorter surgery and less invasive one. Thats not to say she won’t have pain or need assistance. The first 24 to 48 hrs the toughest i think and good to have someone there if not just to comfort her and of course to be her advocate.
Make sure you contact the social services department of the hospital to arrange for visiting nurses….most insurance companies will allow so many visits. She’ll need help with the new diversion and changing bags at first and cleaning the catheters leading to the bags. Its not difficult once you get the hang of it.
Her time in the hospital depends on how fast her bowels wake up and she can take liquids and soft foods and her age could be a factor.
She will be very tired and the muscles in the abdomen will be very sore at first… She will not be able to bend herself up to a sitting position right away. Its important that she walk and the nurses will see to that…but if they are understaffed it may fall on you to be her walking partner as she’ll be unsteady at first on her feet.
Again if i knew the diversion and her age i could give you a better accessment of how things will play out.
Its interesting to note that with women who have this done the stoma nurses gear all instructions to the patient not the husband….when a man has this done they gear it to the wives. hmmmmmm……….PatWell from a females perspective and not having anyone to wait on me…i pretty much did change all my tubes and cook my own food …just a slower pace……..and i didn’t have to wear the stockings.
You guys have it made!! Pat
And one more thing I forgot….set up a web page for her right away. If you hospital has one (check with the hospital or surgeon), that’s great. If not, use http://www.caringbridge.org. You can set one up, and then email a link to all the relatives and friends, and they can check THAT instead of calling you for information.
What gift that was! And we could update it from the hospital computers, and his friends and family could leave him notes. And we could tell everyone “no visitors, please” and no flower deliveries (a hassle to answer the door), and all that.
Be sure to have one set up before you go, and then all your sibs can know exactly what is going on.
And you all can watch and see how many people visit. It’s great.
Stephany in Iowa
Sorry to take so long to reply to this question, but I wanted to have enough time to reply to all your questions, and I had to get my husband to bed first ;D. He’s just 10 days out from his RC, and I was flushing drain tubes, etc. Now he’s down, and I have a minute.
Keep in mind that I speak only from the standpoint of being his “caregiver” right now, but here is what I’ve learned in the past couple of weeks:
1. Our surgeon said a week to 10 days. We got out on day 8, counting the surgery as day 1, but I think we made it faster because he hadn’t had to use many pain meds, which can slow down the bowel recovery. My sister, who is a nurse practitioner said that nowadays, the pain management people feel that no one should be in pain, so they do tend to push the pain meds, and that can keep the bowels asleep longer.
2. I got a hotel room a couple of miles from the hospital, so I had somewhere to go to shower, work out, sleep and eat breakfast. Those hours were precious, and gave me time to rest. If your mother is having surgery out of town, you might keep that in mind. Also, the hotel had a special “hospital” rate, so we only paid $56 per night, plus tax, etc.
That said, I was very glad I was close, and that I had a COMPLETE list of all my husband’s medications. Since he could take nothing by mouth from the night before surgery until he had bowel sounds, he was off some crucial meds, and if I hadn’t spoken up when I did (I demanded he get started back on his anti-depressants), we would have had a big crisis. He had to sit through a nurse from the psych ward, two residents from the psych ward, and finally the head of the psych ward before the actually got him back on his meds.
Had I known then what I know now, I would have DEMANDED that he get his anti-depressants through his IV, even if they didn’t know whether or not they could do it. The time to arrange that is BEFORE the surgery, with the surgeon and his team.
Then he had a high blood pressure crisis six days in, in the middle of the night, and the resident on call wanted to put him on Lopressor, to which he had had a BAD reaction in the past. If he hadn’t been completely cognizant of his medications and reactions, he could have wound up even more depressed.
He did come through, but if he hadn’t had me as an advocat, it would have been much more difficult. So, whoever stays with her in the hospital, if you have someone do it, make sure they know each and every medication and what it does and doesn’t do.
I found that my best idea was to have brought one of those wire rolling trolleys that you see the elderly using to take groceries home. I filled it with his medical information, my supper to eat in the hospital, books to read, snacks for quick energy, etc. Then I could roll it back to the car, to the hotel, fill it again, and roll back to the ward.
But, I must add that the nurses were awesome, and the aides were great. Just make sure each shift change that you know your nurse’s name and your aide’s name, and call them by name, and make your presence felt. You can help with bathing, changing dressings, drains, etc., and it gets you ready for the home care. You may not even have the same nurses any of the days you are there, but it helps to know what is going on. you can help with taking her for a walk (trailing all the tubes and machines), ask the nurse her questions, finding a comfortable chair for her, and keep her spirits up.
3. Your mother will need someone at home with her at least until she gets her stitches and drains out….maybe 3 weeks? She won’t be able to flush the tubes by herself, or put on her TED hose, or walk a lot, or any of the really annoying things she’ll have to do to get better.
You should make sure you slip the doc a note before the surgery about her leakage, but I bet it won’t make a bit of difference if she’s going to have a “new” place from which to pee ::)
Now, about your dad. Is your mother his main caregiver? Would he be amenable to going into assisted living for a couple of weeks until your mom can take care of herself?
Just think about those middle of the night crises that happen, and if you had to take care of both of them, what would you do?
If not, would she go to a care facitility where they could care for her post-surgery, and you could care for your dad?
If those don’t work, do you have any type of home health care that you could activate for a couple of months?
I probably just gave you w-a-y too much information, but think on it a while. I got SO much help from this web cafe that I want to give back when I can.
Feel free to ask more questions….people here are great!
Stephany in Iowa (where I can finally feed my husband my own cooking)
Thank you so much! I know these may seem like silly questions, but we need to know these things so we can make arrangements for our children, our jobs etc. There are 4 of us, so that helps, but we need to sort of have a plan in place. You have no idea how much I appreciate you just taking the time to reply.
Julie
[quote author=worrieddaughter link=topic=1097.msg7251#msg7251 date=1186615159]
Hello! My mom goes in on Monday for her RC surgery. My brothers and sister are trying to think about what we will need to do after the surgery. Hopefully you can answer a few questions.
1) how long is the average hospital stay?[/quote]
Ask the doctor. The average stay could be 10 days to 2 weeks, but ask someone who knows her situation better than we do.Afterthought–since she’s not getting a neobladder it will probably be fewer days, but still, you should ask.
2) We know we will need to be there round the clock for the first day or so, but what about after that? Should we plan to spend every night with her?
My wife was going to stay every night, but she ended up only staying the first night. So maybe, maybe not. Be flexible. She might need you to stay there. Be prepared to.
3) My dad is in bad health and can barely tend to himself. When she comes home will we need to spend the night?
Absolutely. And she is going to need someone to stay more than the night. She won’t be able to do anything by herself for awhile. She is going to need being taken care of coming out of the hospital like she took care of you when you were born. I couldn’t get out of bed for a few days without help. When I made it to a chair I needed help getting out of it. Your mother is going to be very very weak and very very helpless.
Also, we found out something today that she failed to tell us or the doctor. SHe is having to wear a pad because she is leaking urine. Is that of importance? Do we need to let the doctor know or is it just part of it?
Why wouldn’t you tell him? That just makes sense that he is totally aware of every facet, whether it seems important to us or not.
If I seem rushed in my reply it’s because I’m heading out to dinner and I didn’t want you to have to wait hours for an answer.
Second afterthought–she might recover quickly and all that I said could be for naught. Be be prepared to stay and help her.
Best wishes for your mom and you,
Zach
“Standing on my Head”––my chemo journal
T3a Grade 4 N+M0
RC at USC/Norris June 23, 2006 by Dr. John SteinSign In to reply.
