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