Feelings come and feeling go, sometimes they stay awhile sometimes they go quickly. Sometimes I can eat sometimes I can't, sometimes I can sleep sometimes I can't. Sometimes I have I have hope and sometimes I think death. I am all over the board up and down. I feel like I need to know how to feel, but I just can't get a handle on it. I want to do everything to help him, I want to be good. But sometimes I feel like I am just a bad person when I want to say oh dear not again. I can't live with myself sometimes, he has emotions I don't know how to deal with them.
I work full time and take him back and forth for treatments daily which is 45 minutes each way and the the 1/2 hour for the treatment. I come home and feel like I need to spend all my time doing things that he needs.
I am learning to go to my 12 step program meetings, I need them right now.
Anyone have a suggestion?
Pat

Pat,

Listen I think your job is tougher than the patients as have our Tx plan all laid out for us and we have a bevy of experts to consult when anything goes awry but the Caregiver has to deal with all the unknowns and really has no one to turn to for support (except this site).

Hang in there and hopefully you'll hear from all the resident caregiver experts that have been there and done it.

Yes Pat I agree with David, We know what to expect because we are going theu it, buy there is no way for you to kno=w how he could react,. His life has been completely changed and if he is like I was, I still don't kpow how or what I was doing to my woman. I feel for you, but please stick with him because he will need you more and more as he gets a little helpless and weak.

Pat - review a lot of the other caregiver posts. That has helped me the most. I thought I was the only one that was going slowly crazy and found out that it's nearly all of us at one point or another. All we can do is try to help each other through it and go one day at a time.

Cheryl

Pat,

My wife told me post Tx that she would often go sit in the car or another part of our house and just cry. She didn't want me to see it and man it would have definitely put more pressure on me if I had seen it during Tx but she just felt so alone with really no one to talk to that would have understood her. I didn't find this site until 3 weeks post Tx and she's not the computer type unless it's got something to do with gossip.

Pat,

Leave a little time for yourself at least a few times a week- go to your meetings, or yoga, or church, or a walk with a friend. You'll be a better caregiver if you're good to yourself..

hang in there
-C

Hi PAt,
Hang on. I kept positive, but exhaustion and helplessness got to me. I felt like nothing I did eased any of martin's pain, but i know now it did (he told me later). It's so tough but you need to keep strong.
I had a colleague I went for coffee with everytime I was at work around lunchtime, and friends to winge at. And I must say this board was a life saver. And my family in France called almost every day.
What got to me one day was that every one kept asking how Martin was, and at that point I was so tired looking after Martin and holding down a job, that I thought "how about me, no one asks how I am!". But I keot quiet I wasn't sick and i felt bad just thinking that at the time. But it's normal.
As everyone else here said take some time out, even if it is having a cup of tea in the garden, look at the flowers, talk to a friend, and come here and talk
All the best.
cecilia

Hi Pat,

You sound alot like me. While Tom was going thru Tx, I would leave the house two times's a day just to sit somewhere and cry, think, call someone...almost Never cried in front of him...I couldn't bear seeing him see me that way. It made him angry because, I think, he wanted me to be strong. You were working while this was going on, which was fortunate for you. I was constantly running around trying to find things to feed him...to comfort him. But he remained strong and dedicated to showing me how strong he was and still is.
Now, we get the results of his first post-Tx PET today. I know that I do not have to tell you that I am a secret mess inside. I am picking him up at work this morning...he went back to work a week ago...this is the day that I have been dreading as he is so positive that all will be clear!!!
If your hubby is communicating his emotions with you, you are lucky. If not, just try and show him the positive side you have tucked inside of you at all times--later, go somewhere and scream, pray, and then, relax. The best thing that you can do to help him and yourself is to go with the flow...smile, it could be alot worse! And it can get alot better...look at those 20+ year survivors!!!
So, what is this 12 step program meetings you are talking about? AA or another support group?

_________________________
Donna

Donna,

Many of us, me included, had at least one false positive from post Tx scans so my point is don't go over board if his is not all clear. My first 2 post Tx scans had words like "this area can not be excluded" as each one showed some tiny spots in my lungs that weren't there pre Tx. The first one showed a spot and by the second scan it has resolved itself but there was a new spot and by my 3rd scan finally all were clear.

Good luck

Donna,
I am in AA, NicA (stopped smoking), Alanon and just started in Overeaters Ann.
Pat

Pat,
It looks like you have a good start here with just taking the time to put your feelings out there for others to see. This is what helped me so very much during my husband's treatments. Many of my posts were "anger driven" and I spent a lot of time venting online. Now I keep a journal. I write in it often, but not daily. I find the good stuff as well as the bad stuff to write down. One day my boss's shrink called to re-schedule an appointment and she (the shrink) asked how I was doing. I just laughed and said "you should have seen my journal this morning".
I also found a distant friend to talk to and email. I needed someone who was very much removed from the closeness of family so that I could really say what I felt without having to worry about somebody else's feelings.
I haven't posted in a while because my recent anger has been quite overwhelming and I wanted to get it under control before going on a 10 page online rant, but I wanted to let you know that your Post was really a great way to help deal. Don't be afraid to keep ranting. There are plenty of us out here that do the same.

Karen

Karen,
Thanks for the response. I am in a couple of 12 step programs so I have friends and sponsors that I can confide in and vent to that does help. They do not know anything about the disease but from a point of a friend it really does help.
I am also spending time to journal each day when I do my meditations, I have found that this also helps me a lot.
Pat