Cheryl - I'm so glad you came here and reached out to the wonderful family that is OCF. Your story of experiences and feelings and raw emotions brought tears to my eyes and I'm usually a very "hold it together" person. Before logging on, I had been thinking of all the "un-initiated" to this disease and was wishing for someone to be able to really tell them what a patient and his/her caregiver are really going through - to try to make them understand and then maybe be more supportive. You have done that so eloquently and with the sweetest love anyone could have for the special person in their life. From others' posts I've seen over the years, there are many survivors who react just as your husband is doing. It is so difficult, especially for one who has always been so in charge of his life and accustomed to being in control. He's grabbing on to whatever he has to keep whatever shred of control he still has. For a caregiver, it is difficult more than words can say to be able to know when to be soft and when to be tough and then feeling guilty when you see the suffering that this horrible disease brings with it. When family members or friends come to your house who don't realize what this disease does to someone, just keep and show them a copy of your first post. Maybe it will bring a tear to their eyes, too - and get them moving in the right direction to offer help. You have received such excellent suggestions above - the only thing that comes to my mind is that sometimes the meds a patient is on will make him lash out and react badly to all those around him, especially those closest to him. Perhaps you could check with the doctors about this? As others have said, you do need to take care of YOU, so that you can be able to continue being the amazing and loving caregiver that you are. Please stay with us and let us know how you and Doug are doing.


Anne-Marie
CG to son, Paul (age 33, non-smoker) SCC Stage 2, Surgery 9/21/06, 1/6 tongue Rt.side removed, +48 lymph nodes neck. IMRTx28 completed 12/19/06. CT scan 7/8/10 Cancer-free! ("spot" on lung from scar tissue related to Pneumonia.)