Tired and angry
 

I am suprised but I am becoming tired and angry. My wife had cerebellar surgery and she is on high doses of decradon. So she does not sleep much. So, neither do the caregivers. it is wearing on us all, and I found myself getting angry at this diseaes, at this constrained life, at this lack of a break, lack of sleep and need to keep on with a normal life around all of this mess.

I am getting angry and I do not like this in myself.

Re: Tired and angry
 

I think it's pretty normal to become angry. Caregivers bear a huge load and hopefully you will be able to manage some type of break. I'm certain you deserve it. God bless.

Re: Tired and angry
 

I think you have right and reason to be angry with cancer. Cancer sucks, and you've both been hit hard. Just don't compound the problem by getting angry with yourself because you're angry at cancer.

I think you should talk to someone at your cancer center/oncologist's office about respite care, because you need regular breaks from the load you carry. Also query your insurance company about visiting nurse services. You can't be a good caregiver to your wife if it's all on you all the time. The well-being of caregivers is often ignored, but your health and optimistic outlook are essential to your wife's recovery. I know there are resources, because I read about them when I was in treatment. You just need to ask about what's available in your area.

And at the very least, you can always come here to vent about it. As a practical matter, that won't get the work done, but it might make you feel a tiny bit better.

Re: Tired and angry
 

I agree with what the others have said - what you're feeling is normal.

I was diagnosed with cancer in January of this year but I've also been a caregiver to a cancer patient and I have to say, caregiver is the harder, more stressful job - at least for me.

For me, being a patient has been more of a passive role so to speak in that I'm told where to be and what I need and I do it, the only action on my part is to follow directions. Whereas the caregiver role is more of an active role (what do you need, what can I do, let me do this, etc.). You're constantly trying to anticipate and act on the needs of the patient. It's very draining and taxing on the person. Almost everything you do is directed at seeing to someone else's needs and yours go unmet, if that makes sense. Rhondalea is right, you need respite. If you get help and take a bit of a break, you'll likely feel guilty for even wanting the break but it's still very important. If you're feeling drained and exhausted all the time you're not being the best support you can be for your wife and you need to be, for both of your sakes.

I wish you all the best and hope you can get what you need.

Re: Tired and angry
 

We found out Christmas Eve that my wife's cancer has now gone to her meninges. This is a dire situation and we are now talking about risk versus reward of further treatment. I am at a loss. Our kids are 23 and 19 and we talked last night to explain that we are the trreatment team, and we will have to make very hard decisions soon.

Re: Tired and angry
 

I'm so sorry. You just haven't gotten a break.

Please talk to Rolepaul before you make any decisions. He knows this subject better than anyone.

Re: Tired and angry
 

Catalina,

I'm so sorry you're facing this situation. I know I had 'roid rage when I was on Decadron. I also didn't sleep much. I imagine if I had a partner it would have been very trying for him.

On caregiver woes, please remember that it's impossible to give with empty hands. You have to recharge yourself if you want to be of any use to someone else. Establish boundaries. Get sleep and exercise. Eat well. Pray or meditate regularly.

Rhonda's right--talk to Rolepaul. You can PM him. He's our forum expert on CNS metastases.

Re: Tired and angry
 

My biggest problem is that I think i should be stronger i think why am i stressing when it is my wife that has cancer. I say to myself i should be stronger i should show no weakness because if i do Lenny will think there is no hope . So i cry when nobody is around .I research when all my family are asleep , and the bottom line is i can not do anything to help ,i have no magic potion i have to be strong when in fact i am weak, Nothing can change the fact that my wife has cancer and i can not do a damn thing about it .My work look at me and say we will help you when in fact they will help till I can no longer do my job then they will say sorry but we need a manager that is here not one that is here some days but isn't the rest We are sorry you wife has cancer but we need to move on as a business..
So the bottom line is My wife's cancer is going to loose my job, destroy me sanity , also destroy my children's sanity , Suck the life out of her, and i have to sit and watch all the pain and torment this insidious disease reaps on her . Do I like it Hell no. Would i change any of it Hell yes. bottom line is i can't change it so all I can say is I at this moment in time would never change the fact that i love my wife and will be with her to the end no matter what that brings .. I FUCKING HATE CANCER BUT I LOVE MY WIFE MORE

Re: Tired and angry
 

Everything you just said is why I said cancer is harder on the caregiver than the one who has the cancer. Have you taken advantage of the Family Medical Leave Act? It allows you to take up to 3 months off work (without pay) to care for a family member and your employer has to hold a job for you (may be a different job but it has to be comparable to the one you had). My understanding is that the three months doesn't have to be taken all at one time to where maybe you could take some time off to get some relief and then go back to work and then take some more time off down the line when you're reaching your breaking point. The downside is the without pay part but if that's something you could swing, it might be worth looking into.

Re: Tired and angry
 

Dear Graham,

I appreciate your honesty, and I can just feel the intensity of your emotions, and your pain. I'm so sorry you're going through this. What I hear most clearly is your anguish over being unable to fix this situation.

I think you should find someone to talk to in person--a chaplain, spiritual adviser, or counselor. At the hospital where I am treated there are social workers and psychiatrists who are specially trained to help people in situations like yours. I'm assuming there are people like that where you live. You sound like a drowning man. That's the best life preserver I can toss to you. Get help.

It's so hard, and so sad, what you're going through. I'm really sorry.

Amy

Re: Tired and angry
 

I would go and talk to someone but i can not talk to a pastor or someone like that as i have lost all faith that there is a god or a higher being . As for talking to a psychologist or councillor the first question i have asked the two i talked to was have you ever had to deal with a love one with cancer both said no , I just shook my head and walked out how can you possibly talk to someone that has never walked a mile in your shoes and believe they will understand. So I will continue to research Be strong when my wife needs me to be and go on hating cancer with a passion .

Re: Tired and angry
 

Graham - I totally get what you're saying. It's hard to take advice from someone who has no first hand knowledge of what you're going through. I found a couple of links that I hope will be helpful to you.

This first link is to a form you fill out as a caregiver and they match you up with someone who is dealing with the same thing - same cancer, same treatment, etc.

http://www.cancare.org/look-for-support.asp

This second link takes you to a page with links with information for caregivers.

http://www.cancer.org/treatment/caregivers/index

Good luck.

Re: Tired and angry
 

Thanks lucy I will look in to them . Like what you said you can't talk to someone that has no understanding with what you are going through its like asking someone that lives in the desert about surfing they can give an opinion but that is all.
The other drama is how do you tell your kids that they mother might not be here in a few yrs ,I was told cross that bridge when you come to it well here we are here Kids your mum has one of the worst breast cancers going I just don't know what the outcome will be . I am lucky my youngest is 22 but they are still our babies and Its there mum
My biggest problem i have is I am supposed to be the head of the family ,the fixer some would say,If we have a problem i fix it or come up with a solution to fix it, With cancer there is no solution no fixing it I am helpless so i believe i have failed as a head of the family . I know that this is something i have no control over and can't fix but it dosnt stop me feeling worthless and when my wife looks at me with that help me babe look it just rips my heart out i can not do anything . Like i said she will never see me being weak i will always be strong around her and the kids I will never faultier in that job,but like i say and have said I FUCKING HATE CANCER sorry about the swearing

Re: Tired and angry
 

Oh and sorry catalina for highjacking you post

Re: Tired and angry
 

Dear Graham,

Have you considered the possibility that, instead of expecting you to be strong and fix everything, your family wants and needs you to be authentic? That they need to know what you're going through so they can understand it, and maybe help you? That one way to express your love is to share your weakness as well as your strength? And how do you know what your wife and kids are feeling unless you ask? Is it possible they're hiding too, to try to help you cope?

Also, have you considered the possibility that anger can't really be compartmentalized, that the anger you believe is directed solely at cancer is leaking out into other aspects of your life? How do people see you and relate to you?

You're being really hard on yourself. It's understandable. As you say, you feel you've failed, and you feel helpless. And you are powerless to conquer your wife's cancer. That's a given. Sorry about that. . . .

The question becomes, now what? What is it possible for you to do? It's possible to quiet the storm of thoughts in your head, if only for a moment. It's also possible to work off some of the wearing, corrosive effects of the stress and trauma you're going through by exercising (even just walking.) Worry and fear (and anger) are mind killers. Learning how not to let your circumstances destroy you is something within your power.

I was greatly helped by reading Jon Kabat-Zinn's book, Wherever You Go, There You Are. It's about mindfulness meditation. It's not religious at all, just practical advice. A friend lent me her copy when I was in a very rough patch emotionally (long before I got cancer). I would wake up at 3 am with my heart racing, panicked. I was taking sleeping pills, because my doctor said I had to sleep (he was right, of course.) I couldn't eat. The techniques I learned from the book helped me get a grip. They didn't do a thing to change the circumstance I was in; I didn't get what I wanted, but I found a way to survive.

Above all, know you can keep coming back. Vent all you want. Swear all you want. You are loved and welcomed.

Peace,

Re: Tired and angry
 

Hi Catalina and Graham,

As a husband who is going through a similar journey I have no advice but can share some of my thoughts. We are not super human and as much as we like to show a brave face and want to be seen as strong we are allowed to crumble. We sometimes need to fall apart and that is o'k, we will pull ourselves up again. I can tell you there was a particular timespan during my wifes waiting for the next scan that both she and I held inside our fears and feelings and it all exploded one day. But that was a lesson we needed and now we talk to each other about our fears.

It is not much fun being on this journey not for us and particularly not for our wives. My wife and I hit some very real lows but having said that, we allow each other to have a sense of humour and if you want to look for positives this is something that I truly believe has brought us closer together. I have young children and the future frightens the hell out of me but I can't change the outcome so I just allow myself to feel what I feel and then move on the best I can.