Heike - I wonder if it's time for the 'Nurse from Hell" to make an appearance? I am not the "yeller" type but at one point in my son's Tx, I had finally had it with his resistance to everything and I did yell words to the effect that I was doing all I possibly could to help him survive and the very least he could do is help me out a little - that I just couldn't do it all by myself! Or maybe you could "arrange" for one of his doctors to have a very stern talk with him about putting on his big boy pants and start taking care of his responsibilities. What he appears to be doing now is slow suicide, so maybe a talk about funeral arrangements might also help. I am so sorry you are having such a difficult time but please do try to arrange some time for yourself. I hope things get better very soon.

The only advice I can give is to stay on him. During my treatment there were times that eating, drinking, or even sitting up seemed like the hardest things in the world. And I know that when my wife tried to get me to eat or drink I know that there were times I got frustrated and was short or even mean about it. But without some prodding from her I know I would have ended up doing even worse.

I agree with checking about getting some extra fluid with treatment or in between. Dehydration is a vicious cycle; when you get dehydrated you feel terrible, and it's really hard to catch up with just drinking because of how bad you feel. The PEG is a last resort, but some people definitely need it to get through the treatment.

What a great idea. Will try to do that.

I habe been in contact with our mental health department again and am hoping to get some help. Although knowing my husband he will find it a bother having to talk to someone.
Even being positive this time that I was heard and some follow up will happen. I have annoyed enough people so that they remember my name� fingers crossed.

Yesterday, he was very depressed and picking someone up all the time is exhausting. Well, the weekend is here and it seems as if one Is 'on holidays'.

Heike - I admire your strength, your courage and patience. Sometimes you do have to try different things before things start to happen. I'm keeping my fingers crossed for you, too.

It's so nice to have a weekend off the relentless treatment, isn't it! You sound more cheerful, Heike and good on you for making a noise so people remember you. It's very hard to break through that medical/bureaucratic barrier sometimes. One question (one people have probably asked before): is there no medication that will ease your husband's depression?

I hope you have a bit of a rest and that next week goes as smoothly as it can.

Regards
Maureen

Maureen it feels like being on holidays.

Yes, he is on medication regarding his mental health and does take them. But there is no such thing as a 'guarantee' that they work. He's had to change it often and sometimes it's a trial and error.

Anne-Marie you won't believe it but we got a telephone call from the Mental Health Department and this on a Sunday !!! Didn't know they do that �

Simon has been assigned a case worker !! She wanted to make a home appointment but Simon declined.

Unfortunately, I didn't get to speak to her - Simon picked up the phone - and I was very disappointed to learn that He didn't want her help but having said that it's very typical for him.

How is that for timing. There is me trying to get heard and get help � the phone rings and he happens to pick it up and declines the service. I am soooo angry and it's frustrating to see someone declining support when they desperately need it. Why do they think the support think is bad? Grrrrr

Unfortunately, due to privacy laws they do not have to speak to me if he hasn't given any consent to do so. What a stupid system. If there is someone who hasn't got the ability to admit they are ill and needs help why not working with the caregiver together??

Anyway, enjoy the rest of your weekend. And thanks again for your support.

Re the privacy laws - Maybe you could talk to someone at the Mental Health Department re how to go about getting your husband's consent for you to be involved. I can't imagine that they wouldn't realize that someone in depression and undergoing mental health Tx, might not be able at times to make logical or healthy decisions. I seem to remember some time ago a similar situation where the caregiver had finally gotten her "patient" to cooperate or sign something to enable her to be able to consult with the doctors. Maybe someone else will have more ideas or suggestions.
Your and your husband's particular situation reminds me of another caregiver whose husband continued smoking until the end. This was back in 2007. Her name was Liz in the UK and her screen name was Cookey. She started her blog at the point where her husband entered Hospice care - although I think she posted even before re her experiences. If you think it might help, you could check out her blog which starts here:
http://oralcancersupport.org/forums/ubbthreads.php?ubb=showflat&Number=63463&page=1

About your husband's reaction to talking to the case worker. . . it's probably his wanting to be in control which is common to oral cancer patients when they feel they've lost control over so many other things which Cancer has taken away. . . do you think he might accept the idea if he knew that it was something that could help you as much as him? Something that would help you take the best care of him?

Can you try to get some "family" help? If your husband doesnt want to participate, the family counseling would still help you and your children. It would give you some ideas on how to better handle your husband during all of this. Many treatment centers offer mental health support for both the patient and their families.

Best wishes!!!


PS... If you could somehow get your husband to sign over power of attorney for his medical care then you could better call the shots. I would imagine this would be pretty hard to do. But maybe you could approach him as saying if he was too ill to speak for himself then you could get him the help him he needed.

The privacy laws can be infuriating. When my husband was diagnosed, at his first visit to the RO's, they actually had to checked with him that it was all right to talk to me if they needed to call. Some people do not give that permission, which I find weird. The doctor could not tell me my husband's prognosis without my husband's permission either.

I think Christine's suggestion is a good one -- get family help instead. Is there a pastoral/counseling unit at your hospital? Can they help?