Cheryl,

My heart breaks for you. I understand that you are caring for your husband and want to do the best for him but I agree that you must take care of you! You are not alone in feeling guilty and sad. I must guess that you also have felt anger as well.

The thing that we caregivers often do while we are taking care of our loved one is to ignore ourselves until the emotional and physical effects stop us in our tracks. This is where I think you are now. You have reached your limit. You do need to ask for help among family and friends.

I remember those days. My husband did not want anyone but me around. He did not want anyone to see him with his trach and feeding tube. He was fine with the visiting nurse and with my sister, who is also a nurse. But other friends and family members were not welcome back then.

Your husband may be more accepting of a visiting nurse or other supportive care in that they don't know him and don't know what he was like before cancer. For the patient and spouse, this disease is a constant reminder of what has been lost. We still go through that to this day. It is so hard and sad to realize that everything is different.

Please take advantage of support services mentioned in Uptown's post. You cannot continue this pace without a break! A quiet and gentle talk with your husband while holding his hand and reassuring him how much you want the best for him by being your best in essential now.

If you can schedule a few hours a week to get out while someone else is there will do you so much good. You can reconnect with family and friends and clear your head. People generally want to help but they don't always know what to do. Now is the time to ASK for help. Remember that some people cannot rise to the occasion and they may find reasons to not be there. That's okay. Go on to the next person on your list and ASK.

Those who want to help will be thrilled to be able to assist you in any way. Years ago when I was at one of my lowest points, I emailed a colleague and told him what was going on. I said that I really needed people to rally around me. The next thing I know, I am receiving emails from 20 or so people that he had contacted on my behalf. I felt so loved.

You have taken the first step by posting here. Good for you! There are so many of us who KNOW what you are going through. Keep coming back here. This forum was a lifesaver for me and I don't know where I'd be today had I not posted.

One more thing, your husband's frustration and sadness can manifest itself as anger. Anger can be a catch-all emotion for all the other feelings swirling around. Try not to take that personally. He feels safe with you, so you will be the recipient. There may be a time that you will have to gently but firmly communicate to him that directing his negative feelings toward you is inappropriate and unacceptable.

I remember being on our first visit to the Radiation Oncologist. After the appointment, where we had gotten the low down on what was to come, we were on our way through the maze of corridors to get back to our car. I was fumbling around for my keys, had to stop, put my bag on the floor and look for them. My husband was really pissed off, crabbing, huffing and puffing about this short-coming of mine. It hit me! I said, "Oh, am I inconveniencing you right now? Let me tell you what an inconvenience your illness has been for me. Back off."

I had set a new boundary. It is okay to be angry, sad, miserable, pissed off, etal, but don't take it out on me, your caregiver. Tough love. I am not interpreting that this is what you are going through, I just wanted to let you know some of the things that we experienced. Any time you need a shoulder or support, I can listen. You can PM me here or on FB.

Sending you caring thoughts-
Anita

Ranting? Heck no, thats not ranting! We have heard it ALL around here.

You may have had your 5 friends move away but you have just found yourself a whole bunch of new friends. It may be only online but we are real live people who care about others and will help support you. Ive been lucky enough to meet many members across the country and they have become my life long friends. We have a special bond that only we understand which makes us like BFF's immediately when we meet. Maybe you live near some other OCF members, never know. You could have a whole group of new pals that you havent met yet.

The more I read of your struggles, the more Im thinking your husband has some issues. Its not fair to you at all. I seriously advise you to have a long discussion with him and explain how trapped you feel. He must start to take some responsibility for his actions and selfishness. Im not saying he doesnt have every right to feel upset, depressed and angry. Those feelings need to be worked thru with a professional. Im so sorry for everything you both are going thru.

Life just isnt fair!

Hi Cheryl - I too welcome you to this new family. It's a good one, no it's a great one as we all have something big in common, the C; either as a patient or as a caregiver. So, unlike many friends or even relatives we do to a certain extent know what you are going through now and have in the past. Everything you feel we have felt too (collectively).

So, maybe the first thing you need here, even before you start getting advice about what to do with Doug, is to start developing some individual friendships here on the forum. There are a lot of really good people here willing to do that. As you read what people write you will be able to tell if that is a person you want to become a closer friend too.

Here on the forum we have Personal Messages (PM's for short). If you want to talk privately to an individual just click their username and choose Send Message. It will go just to them and can be read only by them. Their response will be equally private.

At the top of each page if you have a blinking flag next to the words My Stuff, that means someone sent you a PM. Click on the flag to read it.

I'm sending you a PM after writing this.

Again, welcome to the family.

Tony

Cheryl, I read your post yesterday morning before leaving for work. I have thought about you all day and night. I have only gone through a fraction of what you are dealing with, but I remember those raw & desperate feelings.

I've been trying to think about what might be helpful - one thing that jumped out at me when I reread your words, " I miss life, is that a horrible thing to say? It feels it, and the guilt gets to me". NO, it's not a horrible thing to say, it's normal. You are expecting too much of yourself...

At a time before the treatment side effects took a toll on my husband, we were trying to cope with the dx and the unknown, and I was trying not to cry, stay positive, etc. It felt false to me. I read in a cancer publication that sharing these feelings with the patient is sometimes a good thing. That gave me the permission I needed to open up to my husband. We had a long cry together and I actually felt better. I'm not saying this should be your approach, but holding in these normal feelings can make it more difficult to cope.

Regarding support from others, I was (and still am) bitterly disappointed by the reaction of my two adult stepdaughters. They did not help and were even distant. I don't want to take up this post describing what happened, but want you to know that you are not alone in having others disappoint you. I did have others who helped. I want to mention that the best thing for me was taking a walk with someone. Somehow it was more natural to talk while walking, instead of sitting down for a big heart-to-heart, and it got me out of the house for a short time.

Please keep in touch and let us know if any of these posts point you in a helpful direction. I agree with Christine, it seems that your husband is not being fair to you and that pattern has been established.

Lottie

Cheryl,

Wow, you have both been through the wringer and my heart goes out to you. Have you considered guilt? It may sound mean, but maybe your husband needs to hear your needs for a change.

My dad went through a very difficult kidney disease which saw him on dialysis for a year and a half. He lost 80 pounds within a few months and the dialysis took a huge toll on his strength and ability to function. My mom, of course did everything for him, and never uttered a word of complaint (I am halfway across the country). When she finally confessed her stress to me, I confronted my dad, and asked if he intended to make her his slave. He was shocked. He had been so wrapped up in his own misery he forgot that my mom was going through this with him.

Your husband sounds like a good man at heart who has simply forgotten. Remind him that you can make new memories, and ask him if he wants you to remember him (or see him) as a housebound invalid. Does how you see him matter? Does how you feel matter? It sounds harsh, but it may be the push he needs if he considers that any effort he makes is for you.

Keep coming, this is always a safe place.

Hi... sorry life has taken me away for a few days - normally I drop in daily but ...dare I say st.nick has kidnapped me and made me a slave to the mall - hello Christmas shopping!!! ... Lord save me - anyway I wanted to welcome you Cheryl (I'm another Cheryl and there are a few more here).
I watched one of my good friend slowly fade away from cancer a year ago. The one thing I think that made it easier for her family was having so many people around her. I wish that for you.
Your husband - it sounds to me - is very angry, clearly resentful, and proud. Before all this began I gather owning his own company made him feel fulfilled, and successful and confident. For a lot of men - to them - this is where their value is.
I know there is a lot of baggage there - and the guilt must be overwhelming but you have to stop. Taking this in you are only harming yourself. Firstly you are still grieving what you have lost - your husband too. But by holding onto that nothing will ever change. The reality is - sadly that life is gone and what has come to exist in its place is devastating and harmful. The first step to getting past this is acceptance. This acceptance will allow you to do one thing that you haven't up until now - which is step back and not personalize this. '( I know 1 hard to do what you are living it day to day - but for your own self preservation you have to)
When I was first married to my husband (he's very successful and has his moments of definite selfishness) - I would allow his mood and behavior to affect me in such a way that I felt guilty and believed I was at fault. I guess with maturity and over time I grew to accept that his mood and feelings were exactly that - HIS - and normally my behavior had no bearing on them - although my reaction to them could. I stopped feeling guilty - grew a back bone and told him... I'm not your whipping boy and if you are worried or scared or mourning or upset - I will listen and I will talk and do what I can to help but I am NOT going to be an emotional punching bag.
I say this because your husband is clearly - as I said - angry and resentful, resentful of all he has lost, of you and the fact that you are well and can live your life 'normally' if you choose, resentful of how he is forced to live. And he's clearly taking it out on you.
Accepting what has happened and the grieving the loss of your former life is natural but at some point you have to shake it off and move past it or you will self destruct.
I know this all sounds harsh but your husband is a grown man and yes life has truly dealt him a cruel hand but when faced with this people tend to do one of two things - close up and step away - or grow together in support and strength. I see from your posting you wanted the latter. He did the former.
You can't really change this - for him it has to be something he will change from within. He may or he may not. BUT you can change your reaction.
You need to start living your life. You need to tell him you love him, have done everything you can and will continue to do so to support him but if he's not going to help himself then you are limited.
I suggest do take the time to go out for a bit. Spend an hour or two doing the things you love. Even if it's just an hour a day to take a yoga class (to make a friend or two) go to a gym or even join a support group. He is an adult, and he will - likely being as stubborn as he sounds - continue to do the things he's going to do. If falling twice hasn't taught him anything then there is nothing you can do to change that - accept it. He makes his own decisions - I'm not saying abandon him or anything and do be mindful of the time you are gone or try and put a safeguard in place ( a neighbor to come knock on the door to borrow milk? While your gone to make sure he's ok) but do take the time. This will freshen you and lighten your mood. It will feed your soul and banish some of the toxicity and this way his mood may change with yours - it may not but at least you will have done for yourself - and you need this. It's not being selfish - it's self preservation. I used to be a nurse and one of the things that's important since it can be a very stressful job, is making sure that day to day you enjoy what you are doing. Once you stop, then you need to change jobs because staying and being miserable day to day can be as detrimental to you as it can be to you patients. It's the same premise here.
You have to learn to get back some of your joy. Your change in behavior - going out for an hour a day - will send him a message - just make it clear to him what message it is. (Sometimes people need it spelled out) not that you are abandoning him and moving on, but rather - he's a grown and independent man (as he is so clearly trying to say) and you trust that he will be okay while you're gone and he can call if he needs you.
This may make him feel better about his situation - you're not hovering worriedly - and you may even bring something interesting and different home to talk about.
Hugs and we are here to support you.

Hi Cheryl,
Wow...your words hit home. We are 2 years out from dx and so far free from a recurrence, but there is still a distance between us. I cannot even imagine how hard this is on you because it sounds like our husbands are very similar. Pride is a very hard thing to break. Kevin has already said that if he has a recurrence he won't do any tx again. I just said ok, because he can't really say that until he is in the situation. I can picture him refusing to go out with a walker too. I don't know what it is about some people but I think it is fairly common.
I am so glad you have found us and let us into your home so to speak. I know how lonely it can get. I found these forums our last week of radiation and have been here since. I received so much info and support those first few months. I was completely lost and writing here in the forums helped me to learn what we were going through was completely normal. We really have become an extended family for each other, and now you are a part of our family too.
I know everyone has given you tons of advise so I won't go there. I just want to say keep coming here to vent, we really do understand completely. I do agree a heart to heart with your husband might help. You can get firm, or cry, but I know with Kevin neither would work. Hopefully it will for you.
Will be thinking of you and praying if that's ok.
Kathy

Wow!
I must repeat myself; you guys are amazing. So much everyone has been through yet even the ones that are out of treatment still come here to offer advice and comfort- truly an inspiration, so very grateful I found you.

Nothing has changed in Doug, but every time I open this site I get a little more courage to stand up for me!

I tried talking to him, at first gently and then with tears.
He sees nothing the way I do, it seems we are on entirely different planets.
I tell him my fears and he tells me not to worry about it- do what I want, do what I think is best.
There was no mention at all of him trying to change his behavior patterns, just mine.

For so long I thought it was just the 'chemo brain' talking, but more and more I realize it really is just him. He choose how he was going to deal with awful disease and there is nothing I can do to make him change.
He says things like he feels sorry for me having to be stuck in this life, for having a half a man and not a husband , but he seems content to keep the situation like it is.

I am desperately trying to accept our 'new reality' and you would think after all this time it would be easier.
Not so.
He is with me, yet I feel like he is gone. It's a crushing weight on my chest every time I think about what we had, what we've lost.
Without Doug taking any steps to make a new different kind of us, it's like mourning his death over and over.
And the GUILT, oh such awful guilt- but I am learning that is time for me to over come.

I've taken my second step in trying to recover a part of me, the first was joining this site.

I called my mom up and asked her to go play bingo with me tomorrow night. Yep just her and I, no sitter with Doug as he has once again refused.
It will be different for me, but I'm going to try and have some fun, and not hang onto my cell like it was a lifeline.

I have even made a decision, that when Doug has Pacemaker surgery 12/27 I will not hover night and day, but for once let Doug and the hospital staff deal with it. ( I've never left his bedside before)

I won't lie; there is still much heartache and oh so many tears, but thanks to all of you and OCF site I am learning to take one step at a time.

Cheryl, being a caregiver is not an easy job at all. I commend you in everything you have done for your husband. he is very lucky, too bad he cant see the whole picture and realize how fortunate he is.

I wouldnt be surprised if his thyroid and testosterone levels were low and that he wasnt suffering from depression as well. In his situation who wouldnt be upset and not thinking straight? This may be why he isnt able to comprehend anything besides his point of view. It almost sounds like he doesnt see you as his ally but more of someone who isnt fully signed on for this battle. Im sure he would not go with the idea of speaking to any professionals about the situation. It wouldnt hurt getting his blood levels checked as well. Never know it may help.

Hang in there, your new BFFs are here to support not only your husband but you as well. We are here for you both.

On another note, fighting may just be what's keeping your husband alive all this tine. If only he can direct it more towards cancer, and not loved ones, everyone may be happier. Sorry for your troubles, and you have plenty of good suggestions.