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