Carol,

I agree with every one and especially Gary , We dont know what goes through ones mind at a time like this ( or any really) We all cope differently. I can't even Imagine what you as caregivers go through ..The only experience I have had ..besides being a mom LOL.. Was taking care of my gramma for the summer when I was 15 ( while grandpa worked) She had minears disease ( spelling?) So while it wasnt life threatening she could not do for herself. I feel so much for all of you care givers out there..for the love and compassion you have and most of all the Strength..To help us through and Get yourself through..I dont think it is a bad thing that you are on the meds...At times I am seriously considering going on them now 4 months later... STill hard ..different ya know . I need people around ..That is my personality...I didnt nessacarilly want to go out in public right away ... But I wanted and I needed people around. I was lucky in the way I came through it..I can only say if and when I ever have to do it again ...I only hope that my caregiver will be as strong and compasionate as those I have met on here .

P.S. Do any of you give lessons...LOL... Hubby sure could use them ..hahaha

Thank you everyone..I think for a minute I might have just freaked out about this...it was boiling up in me...(this is not about me as stated) I look at my husband..and I feel sorry for him..and hope he will make it...I just go..with the help of stronger medication now..making better judgements calls..I actually feel stronger myself..I believe...we will make it..also..thanks again...

Dear Carol, I would take "a small issue" with something you said above-ie: this is not about you. It is, in fact, about you too. Caregivers who are family members are joined at the hip of loved ones going through this battle. P;ease don't downplay or worse yet, bury your emotions during this time. You will need to stay as physically and emotionally strong as possible and that can be hard to do. Wishing you much strenght. Amy in the Ozarks

Amy is correct that this disease affects the caregiver, turns their life upside down, causes great emotional stress, all of it. I think what the people on the thread are trying to express is that the feelings and emotions of the patient are on a different level then a caregiver, it's not as easy for the patient to "think as clearly" as the caregiver, as it's the patient suffering the physical side along with the emotional side. I know for a fact that my husband didn't understand some of my emotions during treatment...........how could he?
With that said, every situation that takes place in the course of treatment is about both the patient and the caregiver..........I guess I would simply suggest that a caregiver realize there are going to be times that a patient will be unreasonable and with good reason. Then is the time to support the patient and help them deal with it their way.
MommaP, I think you are doing a fantastic job and Amy is giving good advice when she says not to lose yourself nor forget yourself in all of this. Your husband will probably do more that you don't understand during his road to recovery, trust me! It sounds like you have a good grip on it now.
Minnie

I think having been on both sides of the equation, like Gary, there is no role that is easy. My mother was in very bad shape and for months after they told her she would die in a 4-6 weeks she realized she may be around a bit longer and suddenly took an active role in her care. Up to then she even refused to change her ileostomy bag. As she took over more it was particularly hard for me to give it all back as I was the one that felt I had to do everything possible to keep her alive.

We reached a point of honest and straightforward communication for perhaps the first time in over 40 years. I learned to let her run her own show and I never questioned her decisions. I also learned to speak up in a nice way when I wanted to do something. I also learned how to ask for clarification in a non-threatening way so I could try and understand her position in my own terms. This was the toughest because, as Gary says, we can not read minds and should not. Sometimes guessing is better than trying to emphathize, but always creates ambiguity.

Mommapez, in my experience, my kids wouldn't come near me for weeks when I was at my worst. I would have done anything to just have them lay next to me in the bed and hug me but they couldn't do it. Once I got up and around and went to some of their functions, they came around.

Again, there is nothing easy on anyone in this journey. Find your strength in any way you can but always be considerate of those around you.

Ed

Thank you for your replies..To Uptown..our daughter is what she refers to as a daddy's girl,in her twenties not married, not because she is weak, but because she adores her father and is just like him. We were so concerned about her, that we tried to not tell her about the cancer until we had all the answers as suggested by a social worker and of course our decision and we did not want her just to know how sick her father was. He actually almost died on us, but she is unaware of that at this time, (he is still in treatment). Her father did not want her to see him in that state. She was so upset when she found out, I had to tell her because she continued to call and ask about him. When she found out that he did not want to see her she was so upset. You can imagine how you would feel if your wife or someone close to you said you had to stay away. They do alot together as a family. We all work shift work so it is hard to do things together, but they had special things they do like going to pancakes breakfasts etc. It was not until our oldest daugher spoke to her and convinced her that these were her fathers wishes. Not only was I very upset but my daughter and I were now under doctors care. He realized that when he came home he must see her and when he arrived she was going to leave and I called her back to speak to him because he was ready to see her. Now all is well, she visits everyday when he is home and he misses her. He has gotten over the fact he has a trach and a feed tube and she is there when he is putting liquid into his body. She is a person who would help and stand beside you and give of herself, she has proved this time and again. She is really family oriented more than anyone else or anyone we know. I think I will have to let it go..and get on with it..and be thankful if he makes it. We seem to really need him now. Thanks again. Carol..

Hi Carol, I have a daughter your daughters age.......shoot, I have a couple of them in that age range In your last post you stated that it hurt your daughter that her father didn't want to see her. That really wasn't the case............he didn't want HER to see HIM. I think you're a "mother bear" like me, I'm almost over the top protective of my kids. When I read the way you wrote it, and the way it appeared that you are interpreting it.........hell, I'd be pissed to. But try thinking of it the other way around......he probably wanted nothing more then to see his child, but it was her feelings he was trying to spare. Just thought this snippet might make you move past it easier, it's tough to dump emotions we have built up in us.