I have a question and I hope that no one thinks I am a jerk. I was wondering about something that is bothering me.

Last week I got sick with a terrible sinus infection. It was pretty bad and when I brought Harry home from the hospital, the doctor told me to sleep elsewhere because I could make him sick.

So I moved to my couch, which is not terribly uncomfortable, but I have been on antibiotics now for 4 days and I don't want to go sleep in our bed.

I am not entirely certain why except that I don't want to bother him. He is restless at night and I am afraid to sleep next to him because I don't want to hurt him or disturb him.

I got a baby monitor and I can hear him downstairs now so I go upstairs a lot to check on him.

Is this unusual? Should I feel bad because I don't want to sleep in our bed?

Should I feel bad? Because I do.

Thanks,
Cindy

Not unusual at all - my wife moved into the spare bedroom for a time so she could get enough rest. With a compromised immune system, you are very thoughtful not to expose him.

Cindy,

I don't think it is that unusual. Like Gary said, you are being considerate in not wanting to disturb Harry. And you also need a good night's sleep so you can be strong enough to continue to care for your family.

And now I will probably sound like a jerk, but this may also be a way for you to distance yourself a little in preparation for the possibility that Harry doesn't beat this. I am not suggesting that Harry won't survive, but I know it has been on your mind a lot and subconsciously perhaps you feel a need to distance yourself a little bit physically, just in case.

With all you have to deal with, if sleeping on the couch works, do it and don't feel bad about it. You have to do what works for you so you can get through this.

Rosie

Thanks Rosie and Gary,

You said something that I have been afraid to think but that I am feeling and that is the distancing. I don't think that I have ever felt so lonely in my life. We used to talk and our lives were always wound together through work and play. Now I can't talk to my best friend because he is the one who is sick and we are distant for many reasons at this time. It makes me very sad and it provokes a lot of memories back to when things were good.

I feel ashamed though, for separating myself like this. He doesn't ask about my not sleeping with him but I think that he wonders or maybe he even knows. It is hard to say what he is thinking. I used to know but not anymore.

I am not coping very well with this cancer thing. I try but I know that I am not. My friends all think that I am doing well but they don't know and if they could see how really bad I am at this they might change their thoughts.

I feel most of the time like I am on autopilot. Sometimes it feels like this isn't really happening. Like I am outside of all of this just watching it go by.

I hope we can make it through this. It is what I hope for every day, but if he doesn't......

Cindy

Dear Cindy,
This is such a hard time for both of you. I, too, felt the 'autopilot' thing, and couldn't (still can't)understand why everyone has commented on how wonderful and strong and brave I have been through all this. I certainly didn't (and still don't) feel any of those things. We do what we have to do to get through - there is no bravery or heroism involved.

I hope you will take the time to sit with your Harry and let him know how much you love him, and how you will fight this thing with him. If he is anything at all like my Tom, he will need that reassurance from you. Think how alone and lonely HE must be feeling. There were many, many nights that I got no sleep because I was so aware of Tom's discomfort and pure misery. I knew, however, that moving to another room would have devastated him. He often offered to move himself, but I also knew that if I agreed to that, he'd be hurt. We both resorted to sleeping aids to help us along. The hardest thing for us now is the lack of physical intimacy. It is a huge wound to us.....I HATE the PEG because it interferes with simple cuddling. I HATE the lack of energy he suffers, as well as the lack of physical strength. I never say anything about this to anyone for fear they will not understand. Tom and I, however, have talked about it......and we are both longing for the day when things will be 'right' for us again.
We never know the time we have left with those we love. I don't know that distancing yourself from Harry is the right thing to do right now, but I am speaking only from my perspective - and from my view of marriage. How will you feel if things don't come out 'right?' How many hours of being with your husband will you have missed?
It is so very hard to talk about the 'what ifs' when an 'if' is a real possibility. We have had to force ourselves to address the hard questions of finances, his business, our possessions, etc....not easy, but necessary. My humble advice would be to get cozy on the sofa and let the feelings and fears pour out. Good, cleansing tears never hurt...
I hope I didn't come across as 'preachy,' as I didn't mean to be.
I will be thinking about you, and praying for peace in your heart.
Nicki

Cindy,
my wife had a nervous breakdown in my post Tx phase, she didn't think I was going to make it. She suffers from PTSD and chronic depression so she was already well medicated. I was pretty beat up after the end of treatment (I am a week shy of 2 years post Tx now). My anger and occasional verbal abusiveness (which I don't even remember) didn't help matters either. She really needed some space for her own sanity.

Being a little more transparent with your closest friends might be helpful for you also. There is a lot of therapy to be gained in venting. They still won't be able to relate unless they have been in your shoes.

What you are experiencing are the stages of grief, not because he may or may nor survive, but because you are greiving your previous pre-cancer life together. Some counseling and/or a support group would really benefit you right now.

The 5 stages of grief are denial, rage & anger, bargaining, depression, and finally acceptance. Please note that they won't necessarily come in order and some may occur simultaneously.

I have a therapist that I see every week. For a long time it was really helpful and after each meeting I was able to walk tall and face the disease head on. But that has diminished over time and the further that we have gotten into this thing the harder it has become.

As far as intimacy goes... we were already fighting about sex and romance before his diagnosis. Now all of the arguments seem so petty and I wish that I would have just given in instead of being so damned hard headed and principled.

Our marriage was on the brink when we found out about the cancer. We are stronger now but for all the wrong reasons. I am just hoping that when this is done that we can mend the broken pieces of our lives.

Love was never the issue here. There is no doubt by either of us that we both love each other beyond words. But my husband is the kind of person who believes that he must sacrifice his own happiness for mine. Often he mistakes this as an excuse to leave my life. His reasons are simple.... if he removes himself from my life I will be better off. It is something we have been fighting about for a long long time.

Now I look back on every argument, every disagreement, every principle that I just had to stand up for and I wonder if any of it really matters.

I think that I stay on the couch because I have a little peace there. I am away from the disease that I am hating more each day even though I feel so rotten that I at least have the option of taking a respite from this madness and he does not. I feel guilty if I walk away and do something that is supposed to be fun, or if I take time for myself, because he can never do that. The disease is every moment of his life and it is not fair that I can occasionally walk away from it.

People always say, "Take time for yourself", but I can't because that is time away from my responsibilities and the things that need me the most.

There will be time for rest later. There is no time to waste today.

Cindy

I agree with each and every word that Nicki has posted. Distancing yourself would be so painful for your husband and he is already dealing with having cancer. How does Harry feel about it? How is Harry dealing with his feelings of depression and fear? Focusing on this might make it easier to deal with all that is going on for you. I'm not saying neglect yourself by any means. But Harry has so much to deal with and to think about right now that worrying why you are staying on the couch seems a waste of energy for him. Tell him why, explain it to him, give you and him some relief. There is no set of rules for dealing with cancer, all we have is the experience and knowledge of those that have faced treatment before us. Your role in this is as caregiver, Harry needs you, alot!! When you're feeling really, really crappy and depressed, just want to scream and holler and cry.......think of how Harry feels. I was the patient and that helped me alot. When I felt like pitying myself and focusing on how I felt, I would think about my kids, my husband, how they felt and how I didn't want to add anymore to their stress. It helped me so that I didn't get wrapped up in my feelings and make the disease all about me, because it wasn't, cancer is a family affair.
I hope you feel better soon.
Minnie

Wow Minnie.

I agree 100%. I am going through something similar to Cindy in that I feel bad when I am not with my mother on hospice. I go every day and then I feel guilty that I should stay there longer. But, I have work and other things to do. I rarely take time for myself, but it is so important to do that..My own mother wrote me a note (because she cant speak.) before going on hospice to be strong otherwise I was of no use to her. That really helped me and made me stronger. Also, someone told me that it was important that my mother thought she was not a burden. I try hard so that she doesnt feel that way. Also, when my mother first got sick, she pulled away from people and the family. Someone told me that when people have cancer, they are sensitive that people dont want to be around them. I believe it is important to not treat him differently..to try to keep some normalcy, CIndy. Believe me, I know it is hard. Trust me. I left my mother today in her hospital bed in the house so sick and I want to cry every day that I am there..But I try to stay strong. and Cindy, you need rest and some fun in order to do that. Please try to take some time for you but dont let this disease ruin everything you care about. I am thinking of you Cindy...and praying for all of you
Stephany

Cindy,
if you don't take care of yourself, no one else will. It takes tremendous strength and focus to be a patient and also a caregiver. It also takes a positive attitude. Maintaining your mental and physical health has to come first.

In AA thay have a little pamplet about staying in the "now". The past is gone and NOTHING anyone does will change it - let it go. The future is not yours so worrying about it is futile also. All you have is today - right now. Stay in the moment and the battle becomes a little easier. It is insanity to get into the "woulda, coulda, shoulda".

Most of us have been blessed with tremendous healing in our marriages as a result of this disease. My wife and I were going through similar trials to yours and I can say that today we are closer and more together than ever, although we had some rough moments during the treatment and post recovery phase - and that mostly because of me.

Sex will naturally go on the back burner for a while as a result of many aspects of the treatment. It was the last thing on my mind as I was fighting for my life.

Maybe it's time to change therapists. Sometimes we outgrow them and need to find a fresh perspective. These are issues that you should be able to find some help for in therapy. I commend you for staying in therapy. I have had a few bad therapists over the years that I have "fired".