I have been trying so hard to keep a good, positive attitude and to cover up my fears and worry over Linda that I seem to have become a Man of Steel in others' eyes. So far from the truth. We brought Linda home from the hospital yesterday and I'm not at all sure we should have. She has chemo on tues and I'm not at all sure that in her present state they'll do it. I fear she may not get well enough to handle chemo at all and I'm very afraid that she is not going to make it. Maybe I shouldn't have said that but I feel I can open up here with what I don't want to say even to my family, let alone on Facebook. Michael totally freaks out over every change in her state of health and doesn't bother to hide it. He's done a tremendous job of keeping his Mom on schedule for her meds, keeping track of her temp and o2 saturation and changing her ostomy bag, but he complains constantely about how little sleep he gets, how stressed he is, how hard he works at these things, all in the presence of Linda, and he brow beats her when she can't remember if she took her pain med or any time she is a little unco-operative, laying on the stress levels for Linda and me both. I've talked to him about his attitude and how he makes everything all about him but that led to a shouting match and I felt very guilty that Linda could here it all. Later he said that when he's talking that way to his Mom that he's aware of it and wishes he didn't sound like that, but just this morning he had a total fit because her bag came off and he had to0 change it. I tell him to go get some sleep and I'll do it but he won't and so he browbeats and bitches away the whole time. I can not do the job as welol as he can but I can do it and I would rather do it myself, however imperfectly, than to have to listen to him. He thinks I'm being really nonchalant about all of this and gets pissed off if I try to inject a little humor now and then, like I'm just not taking it seriously, "Man of Steel". I just don't want Linda to know how afraid I am. PC is acting up, I'll continue later.

So, I know that I'm not talking about oral cancer here and I have gone to an ovarian cancer forum but it takes a while to be comfortable enough with strangers to really talk about things. I feel at home here with all my OCF family who know that I'm not really given to whining (I hope). I really don't know what to do about Michael. As I said, he does a wonderful job on the physical side of things but he is really driving both his Mom and me into a state of stress that is not at all good for anyone. Often he goes off on a rant and gets her all upset and then says he feels better letting that out. Well, fine, he feels better but everyone else has had that much more stress added. I keep it all inside so not to upset Linda and it's tearing me up. Maybe somewhere between how Michael is handling this and how I am there may be the right way, if there even is such a thing. Any way, that's enough of my rant. Love you all.

Oh David <<<HUGS>>> -- I am so glad you brought this here. The tension must make everything so much harder. Michael sounds angry at his Mom for being sick and needing his help.

I would consider scheduling shifts for caring for Linda so that Michael is "off duty" and you are on duty at designated times. Maybe your insurance would cover visits from a home health nurse -- a nurse might come in and see ways to make life easier, medication logs, etc. I wish I lived nearby and could try to ease the load for you all in some way.

But mostly just want to say, you are right to insist that everyone be compassionate to each other through this difficult time.

David, "rant" away.
Sometimes we need a "safe" spot to land, in order to move forward and figure things out.
Praying that this will get resolved for you and Linda.
Barbara (caregiver of Richard)

Hi David,
I know a little of what Michael is going through because I get frustrated with my Mom sometimes. Luckily, maybe it's my age, I am able to step back and catch my breath before I really hurt her feelings. I think we do it out of fear more than anything. It sounds like you need to have a counselor involved. Do you go to church or have a church family that could intervene a little bit? What about other friends or family members? I can't imagine how awful this all makes Linda feel and as her hubby you need to just step in and put your foot down. She needs you to be her voice if at all possible. Not that you probably don't already know this, but maybe you feel you shouldn't because he is just trying to help. But that kind of help is doing more harm. Like you said, doing something slightly off is better than belittling Linda.
I'm so glad you know we are here for you. I love that we can vent to each other.
Kathy

David, Im so sorry to hear your struggles are continuing! I know you have your hands full with Linda.

Your son is having a hard time too. Poor kid watched you go thru your OC battle and then his mother ongoing medical issues. I cant imagine how difficult this is for him to be forced to face the mortality of you both. He probably wouldnt want to talk with a therapist but it would be a good idea.

Wishing you and Linda the very best with all you are facing. Hopefully Michael will begin to calm down as he comes to terms with everything.

Try calling these folks. Maybe they can connect you to a group local to Chico. Finding a local support group may really help to go and learn coping skills that eases the situation all around.

Cancer Support Community San Francisco Bay Area
3276 McNutt Avenue
Walnut Creek, CA 94597
United States
925-933-0107
www.cancersupport.net

There is a local ostomy support group which meets next sunday Linda and I plan to attend, hopefully Michael will go with us as the main focus right now is with the ostomy and how to deal with it. The local ACS has already offered help with problems associated with the cancer and has given us some help with buying groceries in the form of gift cards to Safeway market. We'll find out through them about support groups and also look to the group suggested by Don. This amount of stress is terribly unhealthy for us all and needs to be brought under control and we can't seem to do that ourselves as every attempt to address it turns into a shouting match.

Hi David:
I have been keeping up with you on Facebook, and here when you post, and so sorry to hear what you are experiencing. I don't know the age of Michael, but for some reason younger people cannot take the stress that us older folks have learned to accept. I'm sure that inside Michael regrets the way he acts/talks, but that's no comfort to you or Linda. You're right that she doesn't need to hear or see his actions, but if he lives with you, that will be hard to control unless you maybe just take him aside and read him the riot act about how he behaves and you want him to STOP - period. You have always seemed like such a soft spoken caring person, I'm sure you have let him get away with things he shouldn't, just in hopes that he will change. Try to convince him that he is hurting his Mom more than he is helping. Ask him why he wants to hurt her? Tell him that is not acceptable and he needs to change or leave. Maybe that will scare him into "thinking" before he acts or speaks. This is just my 2-cents worth, but thought I'd let you know what I think. I have been praying for you and Linda and always look forward to some good news. If things go on like they seem to be now, you'll end up sick yourself with worry. I feel sorry for Michael, but he does need to stop.
julieann

Oh David - I'm so glad you did come here. It really helps just to know there are others who really do care and can feel what you are going through. You and Linda and Michael have all had a pretty rough time of it. And when someone you care about is hurting, especially a child - it's really hard to take a firm stand and set some rules. You've had some good suggestions. Mamacita's idea of a home health nurse might just be the thing that could make a difference. Sometimes someone outside of family, who can see things objectively can offer suggestions to Michael without having him feel like it's his Dad or Mom telling him what to do. It's good that you and Linda plan to go to the support group and hopefully Michael will too. You have always been such a great caregiver but you need care, too - so that you can keep going and surviving and helping Linda to survive as well. I hope things improve and can get a little easier for all of you.

Hi again. We do care and rant all you want. On a practical note you need help. I'm not being facetious either. There have to be some agencies in your area that offer a break and home health care. Here we have the CCAC. They come to your home (for free) and do all the things a nurse is supposed to - change bags give meds help with wound care etc... (also assess the patients) hopefully there is something similar available to you. I know your son is touchy right now that could be fear, or simply stress, but regardless its bad for both of you (Linda and you) to have to deal with it. I suggest doing some of it yourself. The shift work sounds like a great idea. that way you all get a rest.
Also when approaching your son take him somewhere else - out for a milk shake or something - and have a man to man with him. being away from the situation will help keep your wife from fretting, and maybe make the situation a little more distant.

hugs.

This has gone way beyond a nightmare. Michael is killing me. The stress level that he generates and his constant negativity is very unhealthy. I can only imagine what he's doing to Linda, but if I say anything to him or about him, Linda takes his side and gets mad at me, even though I know that he is stressing her out horribly. Last night we were having a hard time changing the ostomy bag and as Michael got angrier he was yelling at Linda to stop moving around. I mean really nasty yelling. He claims to be a Christian and reads the Bible every night but when things get to that point he starts cursing God and calling Him an "a-hole" for putting us all through this. I tried to get him out of the room last night so I could just take over and do it and he stormed out and Linda immediately got mad at me and demanded that Michael come back in. Maybe I'm wrong and I'm the one being an a-hole. I don't think so but then do a-holes know that they are? Btw, Michael is an adult, he's not a kid though you would never know it. I'm not religious, I don't really believe in any Supreme Being, but I have actually thought about going to see a priest. I have no idea how that would help but I guess it couldn't hurt. While this is a great forum and I love the people here, having this as the ONLY place where I can really say this stuff, well, it's good but I would like to talk face to face with someone. I can't talk to my family as they already6 don't like Michael and never have. I am totally lost here, I have no idea how to deal with this. Thank you all for being here for me.

How did the calls to the support groups go? Are you able to find a local support group for patients and families struggling through treatments?

Sounds like they may to go with you but at least you can get some support and guidance from others. Best to you, don

Linda's doctor can write an order for home health care agency nursing to assess and instruct in ostomy care AND home health care agency Medical Social Worker to assess patient's needs. Locate a Medicare certified "Home Health Care" agency through Linda's hospital or doctor, and the agency can assist in getting the order written correctly so insurance will pay for these medical needs. While you may feel that you do not need an RN, I believe the insurance guidelines require that before an MSW is sent in to a home, a nursing assessment must be done. I have been out of the field for a few years so you will want to speak directly with an administrator with the home health care agency to get the current guidelines.

I am so sorry for your family's distress, but I believe there is help available for you. Make the calls.