Neobladder - Caregiver time off from work - ideas?

Rayn,

Sure hope he changes his mind. Only so much you can do though.

I sure didn't have a cast iron system. I'm one of the ones that had complications. Ileus kept me in the hospital for 12 days and it was a really bad time. The day after, I felt pretty good. Looked fairly good too. That's because all the stuff they pumped in me for pain hadn't worn off. But not long after that, started going down hill in a hurry. I always advise people not to let them take that damn nasal gastric tube out until they are absolutely sure it won't have to go back in again. I had to get mine put back in twice and that is not a fun experience when one is awake!!!

However, once the intestines wake up, things start mending quite quickly. Now, when I get surgery, I ask for epidural and deal with the pain when they take it out because I will do everything I possibly can to avoid another ileus.

Mike

Apparently, you've got a cast iron immune system. Good grief! But I also hear a very positive attitude in the midst of all this as well. I think that in itself has a portion to do with it and the fact that you and others here are smart enough and care enough to get all the facts and be able to share them so frankly.

I'm sure not all surgeries went as well as yours, but you give a lot of hope to those who are terrified of this.

My 'Shoot from the Hip' kind of personality looks a lot like I want to dominate the entire world. My husband has a hard time getting hit between the eyes with the truth, but I've tried everything else. It's in his court now.

He still wants to wait for 6 months to do this. He's not budging so I've decided to back off. I don't want him to die, but as long as he's unwilling to seek help in other areas, there's nothing I can do.

I'll let the dust settle and see what happens.

Rayn

After my RC, I was working from home a week after I got home from the hospital. Short periods of time, intermittently, during the day. Most of my work can be done over the phone and with the use of my laptop. The main thing was to get off the pain pills and those darn things can be tricky. When you try to get off them, your body gets all over-sensitive so you think you need them again when you don't. Weaning off the pain meds fairly quickly is the best bet for a quicker recovery time. I was flying on business trips again after 3 months. Probably could have done so at 2.5 months. The only issue there was that I should have checked bags instead of picking up my carry-on bag and putting it in the overhead bin.

My wife didn't need to be home after the first week when I was home from the hospital and she went out and did things even during the first week.

The 6 months time frame is typically considered the time it takes to be back to 100%. Prior to that, one is building up to 100% but there is less strength and more overall tiredness.

It's a good idea to speak with the doctor about it also. Each of us had our own experiences and, as always, your mileage may vary.

Mike

Hi Cynthia,

This is really a tough thing to deal with. I'm Permanently Disabled so I don't have to worry about work, but there was a time when I was working and had to take a Leave of Absence to take care of my mom.

I think I'd talk to your husband's doctor and find out what he thinks. He would probably know a possible healing time line so you can present it to your employer as "What the Doctor Said". That can hold a lot of weight, knowing a professional is making that call.

Is it possible to perhaps work part time and have family or friends pitch in and assist you? Just my opinion but I think the Caregiver should have a "team" of supporters that can be available to spell you so you don't burn yourself out. From what I have heard, this healing time for this type of surgery takes minimum 2 months just to get back on ones feet. It takes 6 months to a year to really heal everything.

Of course there are things we cannot possibly prepare for, but also talk to your doctor about what can go wrong and what needs to be done about those things.

I don't know how empathetic your employer is, but this is a very, very intensive healing time and if he/she can grasp that, perhaps there is a way for you to take at least 3-4weeks off and then come back part time the next month and go back to full time, depending on what happens.

Hope this helps Dear.

Best regards, Rayn

Cynthia
This question is Great! I had to think a while before answering your question. Mike's timeline is the norm, and I hope you go through this "normally" I recall only needing my wife there for a week after I came home. My only problem was the catheter bags that needed to be emptied. I just felt sorry for myself for a while and Audrey gave me a wakeup call one time when I asked for some help and she informed me that I was a "Big boy now" and could do it myself!

After that wakeup call; about 6 days home, I was off to the races alone.

As for the cooking, I finally got the kitchen to myself and made some great meals for the family. But I couldn't eat them yet. But they ate wuite well for a while.

George

And don't overlook that your husband will qualify for a home health care nurse ..just arrange all that with the caseworker at the hospital. Lots depends on a one floor or 2 floor house. I found i had to really organize myself before i made the trip downstairs to plan and stay a while. I did my own cooking in the morning...eggs are easy and my dear hubby always got me a Starbucks the evening before to put in the fridge for me to microwave in the morning.
I think the most important part for me was that he was there for me in the hospital...lord knows i couldn't advocate for myself.
pat