caregiver needs info for after RC on Monday

16 years 7 months ago #7280 by Zachary
Replied by Zachary on topic caregiver needs info for after RC on Monday

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 Stein

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16 years 7 months ago #7278 by Patricia
Replied by Patricia on topic caregiver needs info for after RC on Monday
Worried 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..........Pat

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16 years 7 months ago #7265 by Patricia
Replied by Patricia on topic caregiver needs info for after RC on Monday
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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16 years 7 months ago #7258 by Stephany
Replied by Stephany on topic caregiver needs info for after RC on Monday
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 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

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16 years 7 months ago #7256 by Stephany
Replied by Stephany on topic caregiver needs info for after RC on Monday
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)

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16 years 7 months ago #7255 by worrieddaughter
Replied by worrieddaughter on topic caregiver needs info for after RC on Monday
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

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