Bob's Wife- I'm not handling this well

Lorrie,

First things first...the urine smell....I do have alot of experience with this for the fact that I took care of my husbands grandmother for 5 years, and my own father for 2, and I have ALOT of kids..."VICKS VAPOR RUB" you take a bit and smear it under your nose. Believe me it works...second get all of the grocery bags you can get. Individually tie each diaper in them (or have him do it)and put them into a large kitchen bag that is SCENTED. This should help with the odor tremendously. Third, get Lysol disinfectant spray but get the "Crisp Linen" scent. It doesn't smell as much like lysol, and it really kills any other lingering odor in the house. Fourth, clean out the linen closet, or another area preferably with a door, and just keep his supplies in it. It is easier when the door is closed not to feel like medical supplies are taking over your house.


Now for the REAL issues.....
Don't put so much pressure on yourself for the way you feel. It is valid. Especially if your relationship was rocky before the cancer. Believe me it is frustrating being a caregiver to begin with, let alone having resentment about prior issues in your relationship.

This is also a time where I think our own mortality comes into play. To see that we really are so vulnerable to disease, and that something like cancer can take an otherwise healthy person and within a year they could be wearing diapers! That is scary stuff!

We hear from Andrea that the surgery end went OK. So aren't the diapers a temporary issue?

Also, check to see if your insurance can pay for an aid to come in a few times a week to help with his personal care if he is really unable to do it himself. Then you can leave the house without feeling guilty...

Lorrie, when my husband was diagnosed, I was mad at him too...this is normal, and a very human emotion. I was mad that he was probably going to die and then I would be all alone, I was mad that he was throwing me into the roll of caregiver for him after raising, (and continuing to raise) our kids. I was mad because for 5 years prior I was a caregiver to his grandmother who lived with us, and my father who lived in the same town. I thought it was my time for a life. We were always too busy for everything. Now, we don't do anything because he can't. There is resentment there, but at the same time, I know that if the tables were turned he would be right there by my side caring for me. Taking out the trash, making dinner, doing the laundry, holding my hand...That is what gets me through.

There is something to say about the for better or worse part...there are no guarantees in this life...when taking those vows that what it means. It doesn't mean that you don't wish things were different as you are smelling the urine, etc.... but the fact is they are not. This is it.

When he feels better you sound like you should get some counselling, but he does need a chance to recover before that. If you held on for the last 10 years then another few months for him to recover is not too much really. He will probably be more open to your issues then. Especially after you were thrust into the caregiver role, and held on like a trooper. Maybe your needs will finally be met.

If not then decisions will have to be made, but for now hang tough, and get this recovery over with. Then re-evaluate your situation if you want. Now isn't really the time. You had plenty of time to run, now you have to stop and take stock of the situation, and do what needs to be done.

I am thinking about you. I understand where you are coming from and I think that you need to give yourself a break. It is OK to feel what you are feeling whatever it is. YOUR FEELINGS ARE VALID. It is ok to vent. But you also have to get back to the business at hand. You know that you are not going anywhere right? I think you know that in your heart. But it is ok to complain, and get aggravated once in a while. So you have to figure out the best way to handle the here and now. You don't want to feel this way everyday right? What can you do for you that can help? Don't be afraid to ask friends and family to help too. Ask them to come stay with him for a few hours so you can do something for you, even if it just driving around...

Keep posting...it does good to get this stuff off your chest. Sometimes that is all you need.

Warmly,
Karen

Lorrie,

First, let me send you a huge hug. You are hurting and are in desperate need of some kindness. Bladder cancer thrown in at a tough point is a marriage is a rotten hand to be dealt. Make that 2 huge hugs.

Then let me be the first to tell you that I for one am not always positive especially since or because the cancer came. I struggle daily with issues and am in the midst of some of the worst days I've had in months. That doesn't make me the worst wife, or mother or patient. It simple means there is a very big dissapointing gap between what I expected and what I got - and that I noticed it. When I was first diagnosed everyone kept bombarding me with "You have to think positive" and wouldn't let me be sad or angry. It was hard to convince them that it is unrealistic to expect me to only have good days since the cancer came. Getting angry and feeling loss happens - trying to hide it won't work. It took some time, but I was able to use this "unfortunate detour in life" to make some changes in how I thought and responded to what was going on in my life. It took me some time to get to that place.

Lorrie, I do not think you are crazy. I do not like diapers, the smell of urine, and all the extra work it has brought any more than you do. During my chemo which was after my bladder removal - I had to wear pull up diapers for almost 4 months. The diuretics and chemo made me wonder if I would even have bladder control again. I tried to sleep without them too soon...every morning I woke up wet I turned into a very bitter person. I was embarrassed and ashamed and I was not a pleasant soul. I wasn't crazy - and you are not crazy either. Throw in another huge hug here. It is not an easy lot you have before you.

I sought out a therapist early on in this mess myself. One who deals with oncology patients. She helped me make some choices and decisions as to how I faced what my life had become. Maybe this is something selfish you need to do for you right now - find a good therapist to help you sort this out. That doesn't make you crazy, Lorrie, it makes you human as me

Please feel free to private message me if I can be of help. Know that you are in my prayers, and please accept yet another huge hug, Holly

Lorrie,

Hi. Wow. What a morning!

I am not the person to really give you any great adivce here, because I've never been on either side of your issue. However, I will make a couple of comments and then move out of the way for those to come in who can really help you.

It sounds to me like you are feeling more staleness in your life than just the air.
I think it would do both yourself and your husband a great favor if you were to very lovingly take a break. Perhaps you can get a cup of coffee and go sit outside in the fresh air, or go to the mall and look at something pretty or maybe just take a walk in nature. This might help you to gain a perspective of some sort.

The other thing I would like to comment on is that there is no way to know if you husbands smoking "caused" the cancer. There are lots of people here who have never used tobacco and got the cancer anyway. There are lots of people who smoke and never get the cancer. However, that is not to deny that there is a strong link to tobacco use and bladder cancer, so I'm sure that his smoking didn't help matters at all. I wouldn't however, go so far as to say that his cancer could have been avoided. You can't prove that by any of us here.

Please go and do something that you enjoy and stop feeling guilty until you get a chance to understand yourself and the situation.

Its' perfectly okay to talk it out here.

With kindest regards,
Rosemary

I've been reading all the wonderful posts - thanks to my daughter Andrea who found this site. Andrea has posted several times & we have received some great information.You are all so positive & loving that I feel like the worst caregiver on earth.I've avoided posting for 2 reasons, 1- that Andrea would read it & think her mother the worst mother in the world & 2,- because Bob might read it- but that won't happen, he doesn't seem interested in this site at all, or anything else these days.So, this morning feeling as badly as I do I decided 'to hell' with it all, & post how I am feeling. Bob had his surgery on Oct.2, has been through hell, yet I'm the one that wants to 'run away'. I keep telling myself that this isn't about me, & that I'm being selfish, I know that I signed on for better or worse, sickness & health blah, blah, but this really 'sucks'. We have had 10 very bad years with this one really topping them all. This latest nightmare started last January when Bob finally mentioned that there was blood in his urine. He had ignored symptoms for awhile- (typical man- head in the sand). After the 1st 'comedy of errors' with the family Dr. being unavailable & lack of communication between Dr. & clinics, we finally were referred to a wonderful Urologist. After several scrapings, then 6 BCG tratments ( none of which did anything to stop the cancer)it was decided that the bladder had to come out. Because Bob is only 61 & relatively healthy, he was a candidate for having a new bladder made for him. He had his surgery on Oct.2. Andrea has posted several times now regarding what this poor guy has gone through since the operstion. We seem to be on track again (fingers crossed), although he is still taking quite a lot of pain 'meds'. Now for the point of this post- I'm not handling this well. I'm looking for reasons to escape from him. I can't stand seeing him wearing a diaper.I hate the piles of laundry. I hate the smell of the apartment. I woke up at 5AM this morning to the smell of urine- I don't want to sleep in the same bed. I can't keep the frown off my face- the only time I smile is when the grandkids visit. I hate garbage cans filled with stinky diapers.I hate the packages of diapers & bed pads & cleansing cloths stacked all over the apartment. I hate the fact that he won't talk to me- just sits there with a sad look on his face. I ask how he is & it's always the same answer- 'not too bad'. He has never been a great communicator but this is ridiculous. I can't get over the fact that the Dr. said that this was caused by smoking- that means that it was avoidable!!! I think that makes me maddest of all. I'm even mad at he Canadian Cancer Society!! I have not found them helpful at all- Bladder Cancer is not a popular topic- it's all about Breast Cancer in this country. I just reread all that I have written- WOW- I really am the worst. Has any one out there ever experienced any of this?? Am I crazy?? Should I run away?? Best regards to all the wonderful caregivers out there- I wish I could be like you-you have my total respect. Lorrie