Hello Everyone,
I am Charlotte, wife of Tom who posts frequently on this forum, and caregiver to him while he was in treatment and recovery. This post is me introducing myself to you here, and also asking for your help.

Tom and I are co-editing the exciting and upcoming book from OCF, Getting Through It. The table of contents (TOC) is in its third version, which will be posted soon. Version 2.5 is up; if you haven't yet checked it out, this will give you a good picture of how the book is developing

General format is question/answer, with answers coming from you, the members of this forum. If you choose to respond, you will be identified by first name and state. Please keep your responses brief, on the topic, and limit each response to the issue presented. If you have other thoughts or topics to suggest, please post those separately. All of the questions submitted thus far for Chapter 8--Your Spouse, Caregivers and Children have been included.

Lots of us are nervous about seeing our thoughts in print and may be hesitant to jump in here. Please let us hear from you. The book is anecdotal, meant to represent the experiences of those who are "getting throught it" day by day. We aren't looking for the "experts", just those of us who've been there and can give comfort and guidance to those who need it.

Here's what I need from you now: If you wish, please respond to the following two questions.

1. What attention do I need as a spouse? It's happening to me, too!

2. How do I deal with the guilt that it's not ME?

Thanks, everyone. I look forward to hearing from you.
Charlotte

Charlotte,
These are very tough questions! I almost think that you need to break them into smaller bites.

Question 1, What I found was that everyone would tell me that they were praying for Erik and they were always wanting to know how "he" was doing, and after having my feelings hurt many times because they didnt think of me too... I finally began saying "WE" "We are doing okay!", "We could really use our lawn mowed." "We had a really bad day today" or "Erik is having a really good day, but frankly I'm really struggling."
As caregivers we tend to put ourselves last all the time (a mom thing too) and I just realized that people needed to see how I was doing too, so I started interjecting "me" and "we" into my conversations about Erik.
When I began doing that, it brought on an awareness to the people around us, that this was a "Family thing" not just an Erik thing.


As for the 2nd question,
I dont know how to deal with the guilt. I have a very strong faith, and I try every day to hand the saddness and fear and guilt to God, because I cant do this one alone.
Every time I look at my husband I see his scar, and I can look in his eyes and see the pain and the uncertainty due to this retched disease. I wonder if sometimes he doesnt ask "why me and not Jenn?" I know that he would never wish this on me, but I cant help but wonder. I know that God has his reasons in allowing (not making it happen) this to happen, and now looking back into it I can see some of the reasons that it was Erik, not me. I could have never been as dignified in this struggle as he has been.


Something else that I did was after people began offering helps here and there, I started a notebook with thier names and phone numbers, and when I needed something I just went down the list of people and picked one for the job I needed done. I called it using my resources. Plus then I wrote next to thier names what they had done, so when this was all over, I could send them a thank you, and I didnt have to try and remember what they had done during this scatterbrained time.

I hope this isnt too discombobulated, and you can use some of it!
More questions please!!!
Jennie

1. What attention do I need as a spouse? It's happening to me, too!


ITS A WE/US SITUATION. ITS NOT ABOUT WHAT A GREAT JOB YOU ARE DOING AS A SPOUSE, ITS ABOUT HOW YOU ARE HANDLING THE SITUATION TOGETHER AND WHAT OTHERS CAN DO FOR BOTH OF YOU

2. How do I deal with the guilt that it's not ME?

YOU DEAL WITH IT ONE DAY AT A TIME AND HANDLE IT THE WAY YOU WOULD WANT YOUR SPOUSE TO DEAL WITH THE SITUATION IF IT WERE YOU.

YOU TALK ABOUT IT AND NOT FEEL SORRY FOR YOUR SPOUSE BUT TRY YOUR BEST TO PUT YOURSELF IN THEIR SHOES TO GRASP A BETTER UNDERSTAND OF WHAT THEY ARE GOING THROUGH TO BETTER HELP THEM.


Charlotte,

this is what helped me and how I partially dealt with our situation. I hope this helps you and glad I can help.


Lily

Jennie and Lily,
Thank you so much for sharing your experiences. I know that others will find them meaningful and will benefit from what you have learned "the hard way".

I have posted all of the questions submitted for this chapter here under the subject, "Can You Help?" Please take a look and see if you'd like to respond to any of the other issues raised. All contributors are welcome!
Thanks again,
Charlotte

Hi Charlotte, I thought I'd give the first one a try about the attention I need as a spouse.

It was easy for me to vent to my sisters and friends about my feelings but the person I really wanted to talk to was Jack. One day we were going about our normal lives and the next day all the rules changed. After 25 years of marriage I didn't know what to say to my husband and the silence was deafening. What I need as a spouse is to still feel that I am the other half of a couple, 2 people who talk to each other and make decisions together. I need to feel we still have emotional and physical connections, and that there's hope for making new dreams to replace the ones cancer has taken from us.

Regards JoAnne

I posed this caregiver question to my husband and this was his response:

He said that during my diagnosis, surgery and radiation that all thoughts of himself left and he coped by focusing on me and the girls. I suspect that may be how men caregivers deal with it. My husband took on the role of doing whatever was needed to make me comfortable and whatever kept homelife consistant for the girls. He was, in my humble opinion, the epitome of caregivers. He set aside his own needs to take care of mine and it certainly made our already strong marriage even stronger.

Hi Charlotte

I've been away for a few weeks ... hope it's not too late to add a few thoughts. I posted a few comments on the project pages. But, here's a few more....

1. What attention do I need as a spouse? It's happening to me, too!

This was a tough one for me and Ken. Lily hit the nail on the head about it being a "We" disease. My toughest battle was to get Ken to understand that "WE" got cancer ... not just him. This cancer has completely changed my life. I was not prepared for that - so I didn't know how to ask for help, or what help to ask for.
One thing I wish I had known earlier in the process:
The critical need to march myself to my doctor and let her know what is going on. Being better prepared for the depression and exhaustion would have been a blessing.


2. How do I deal with the guilt that it's not ME?

I am still working on this one. I often wonder if having the cancer would have been easier than being the caregiver - selfish, I know. Open communication with my husband has been the best way for me to deal with this guilt. Opening the door and letting him know that I wish it had been me - that I struggle with his cancer every day - helped him to admit that he wished it was me too! Again, it's not me or him, it's "WE". Puts a whole new light on the 'in sickness & in health" part of those ol' wedding vows!

As a caregiver, a couple of other notes --

give yourself permission to fall apart, cry, yell, kick the wall, etc. I was afraid that if I started to cry, I wouldn't stop - but holding it all in sure didn't help. First, admit the fear - then release it. You gotta go through this journey, no way around it.

Take life one day at a time. Literally. What appointments do we have today? What meds does he need right now. Do I need to have something refilled today? Do I need the docs to call in something? Class 2 narcotics (i.e. morphine) require a hand written Rx (at least here in AR), so if Ken was getting low on the strong pain killers, I needed the docs to write out the RX -- much easier done during office hours when a nurse or staff member can help push it through the system.

Also - not all pharmacies carried some of the stronger meds regularly. Let your pharmacist know your situation and ask that they keep a refill quantity on hand for you. They are a wonderful resource - if they know what's going on.

Gotta run for now ... will add more when I get a minute!

Thanks!
Carol Richards

Wow! You guys are amazing. Thank you all for your powerful comments. I am downloading, cutting and pasting into the book as we speak.
Cheers,
Charlotte