I hope you can find a way to convince your husband to accept help. Maybe through other channels. No offense but I suspect you are a real broken record and he has pretty much tuned you out. A friend, relative, or someone else he has a relationship with would be worth a try.

At least here in the USA, trying to obtain power of attorney is very difficult to do unless a person is obviously incapacitated or of unsound mind.

Maybe a bit of trickery might be justified to get a release but only you can think through something like that.

Good luck.

Maybe if your husband felt like he did have a choice in the matter of his treatment, it might make him more amenable to suggestions. So here are two choices:

1) If he continues to refuse any help, and just wants to die, the whole process of dying is not pretty and can drag on for a long time.

2) If he accepts help from wherever it is needed, to make him as comfortable as possible, he may have a better chance of getting through the tough part of Tx and surviving the whole experience.

If the idea of #2 seems daunting, maybe he could consider agreeing to just ONE meeting so he can be better informed re what the help consists of. Sometimes an objective outsider with experience in his/her field can get better help and communication going than a friend or family member. Sure hope something good happens soon.

Thought I'd take a brake from posting BUT because I don't post doesn't mean I don't read them. I always value your input and need it too.

I found communication can be added stress as well that means keeping family and friends informed abroad and in Australia. I managed to create a Facebook page just for Simon in order to do that. It turned out to be a brilliant idea now I don't have to text everyone.

I managed to get consent from Simon to discuss his health with the health professionals except mental health - still working on that. I'm glad that I don't have to worry about it anymore.

He has completed 10 out 33 and the side effects have started to show. The forum has helped me greatly concerning these as I was prepared and didn't come as a surprise. Thank you so much to everyone who has contributed.

Unfortunately, Simon is still smoking. It seems as if he's smoking even more. It is sad to see but what can one do?

He is not keeping up with looking after himself and when at the doctors he even lies to them. The care is shared between my oldest daughter and myself, we are just managing but are exhausted coming Saturday. It seems life gets taken over by Simon completely and little time is left for us. The day starts and ends with him. No time to 'shut off' so it seems.

I find myself being cornered. By that I mean the health professionals are looking at me as if they are saying what the ???
Mentally, emotionally, I'm drained. I want to take everyone by their shoulders and shake them so hard so that they wake up. Mental health is a real problem and needs to get addressed while undergoing treatment but unfortunately, they are not equipped for that.

Enough of my whinging � the weekend is here, better refuel and be ready for week three.
Thanks for listening again.

Being a caregiver is a difficult often under-appreciated task. Throw mental health issues into the mix and its a recipe for making things twice as hard. I cant imagine the frustration you must go thru every day, all day long.

When you first came to the forum and explained your family's situation I instantly knew this was going to be one rough road, especially for you. As a caregiver please be kind to yourself. I know there arent enough hours in the day but you must take a few minutes once in a while just for you. Time to clear your head and forget about having the weight of the world on your shoulders. Even if you take a walk around the block by yourself every night its a big help. Give it a try, it cant hurt.

There have been several other members here who have had difficult husbands. These poor caregivers have struggled from day one as their husbands have chosen to ignore sound medical advice. Ive seen a couple times the spouse become so frustrated at their lack of input and attention to their own health they have simply told them step up and help take care of yourself or Im done fighting a losing battle. Its come down to the ultimatum of the husband choosing to become an active participant in their treatments to get the "problem patient" to contribute. Such a shame that the bigger picture isnt understood! This is a life or death fight. If your husband continues to fight the people who are trying to help him instead of the disease then Im concerned this wont turn out very well for him in the end. I wish I was able to have one hour face to face time with your husband. Im certain by the time that hour was over your husband would "get it" and help himself more.

Im so sorry you are going thru such a hard time!!! Please begin immediately taking time for you. I know it will help you to feel a little better about not just yourself but the situation.

We are here not just for the patient but for you too. Hang in there!!!

Heike - It was good to see your post and to know that you are still with us. It is sad about the smoking. For some it really seems so very difficult to give up. But you cannot take on the responsibility for that. No one can make another person, think or feel or do anything that they are either not able or not willing to do.

Do take time for yourself even if it's just a walk around the block, lunch with a friend, seeing a funny movie, whatever gives you a break. It does help.

Heike, I hope that you will print out Christine's and Anne-Marie's posts above mine, and leave the posts where your husband will find them. You can add mine to that print-list if you'd like.

Your husband is being both very selfish and very self-centered. You know this, all of us who have been following your struggle to help him know this. He needs badly to know this.

So, for you, take a moment and realize that we are not responsible for anyone but ourselves; and we (and we alone) are 100% responsible for our lives and our actions (including in-actions).

You are not responsible for the fact that his fear drives him to be an intractable ass, he is.

You have CHOSEN to assist him every way you possibly can because that is what we all do for those we love, but you are NOT responsible for him refusing to cooperate in his own salvation, he alone bears that responsibility.

Please, do not torture yourself with self-doubt; you are doing everything humanly possible to wake him up to his reality, but only he can do that, you cannot do it for him.

Hang in, but don't try to carry his burden; it cannot be done and the doomed effort will damage you. Please don't let that happen.

Good Luck, and Be strong in rejecting any idea that you are responsible for the consequences of his refusal to cooperate in his own survival.

Bart

Heike, being a caregiver myself, I know that the worry and the frustration wear one down even more than the physical tasks. It is the mental anguish that makes you feel tired and isolated because no one else seems to understand the whole picture. Do set aside a few minutes every day when you shut off the thoughts of illness and caregiving. When you are taking that walk around the block, look at the buildings, the people and make up background stories about them to take your mind off the troubles at home. You have to look after yourself, you still have a life to lead.

I have been struggling to write although I wanted and needed the support but everything just seemed too much.
I wake up and my brain is on auto drive � Simon / cancer and I go to bed doing the same. It never stops. Burning out slowly but still going.

Thank you for your messages and yes, you are right he should take responsibilities but the reality is different. Still struggling to find any support, the system is horrendous. I get told it's a team working together but in reality everyone is working alone.

In the meantime I have gotten consent from my husband to discuss his health with all professionals.
My fears have become reality 'cancer depression' has set in on top of his other mental health problems.

He's had an infection between week 2 and 3 and reacted badly to chemo. They had to remove PICC line and he was on IV antibiotics as well as oral. He became very anxious and was agitated during this time. The infection has cleared.

We have finished 20 out of 33 treatments and the path is very rocky. I have difficulties getting him 'to look after himself' , I.e. Applying cream, drinking water or anything else. It's tough.

Thanks to all of you for your contributions to this forum. Because of it I was and am well aware of side effects and can address them as they arise.

I gather you are done now how are things??

Hello Cheryl,

Thank you for asking. Yes, treatment has finished. Last one was Thursday. Can't believe it but we did it. It has been a rocky, exhausting and emotional ride. In the end I took control and still do.

Simon went through treatment without a peg. His teeth, jaw and gums are in good condition, skin no major damage apart from a cut behind the ear and ear lope, hearing ok.

He's lost 21kg since discovery of lump until now. As he was a big man he could afford to loose the weight. He doesn't eat, can't keep food down but manages supplements. Dehydration is still a problem as well constipation or diarrhoea, he's gagging a lot and of course having to deal with dry mouth and mucous build up.

They wanted him to come in 3x a week for the next fortnight for IV fluids to make sure he's dehydrated but he declined. Let's hope he manages to drink enough water.

Unfortunately, he hasn't managed to quit smoking �

Overall, I think we are doing much better than a few weeks or months ago. Also his mental health is slowly improving (he was put on anti depressants as well) and seeing the oncology psychologist is helping too.