Day 24 after my husband's chemo/radiation treatment has ended.

It seems to me that Kevin is remarkably worse when I am around on the weekends. He thinks that might be because he talks more when I am around, and talking makes this throat hurt which makes him throw up. Twice now today.

The morning started positively when our friend came by to take him out for a walk. At his insistence I joined them, and we walked about 45 minutes. He felt good and had energy while she was with us, but none after we returned home. He can't muster energy when I am alone with him.

If I leave him alone he sleeps and doesn't eat (and by that I mean cans of nutrition through the peg tube). If I am home he throws up, even though I am not feeding him any sooner than every 3-4 hours, and the amount he will allow me to give him is less than it was during treatment. Seems like a rock and a hard place.

I know this month after treatment is supposed to be hard, but I am falling into a hole here. It is hard to smile and be the cheer leader. We have started fighting, and he says he only wants me around to feed him, wash his clothes, and make sure he takes his pills. The rest he can take care of himself. That said, my formerly fastidious husband hardly ever bathes, he sleeps sometimes 11 hours without leaving the couch, and he is resentful when I remind him to do his oral care.

His psychiatrist has not been very helpful. Since he is sleeping so much, clearly his antidepressant is too strong, and she actually said that since a quarter of a pill was too strong, perhaps I should put it pill in a baggie, crush it, and sprinkle tiny bits of powder in his food to help him feel better. I am not a doctor, but I would think a new Rx would be in order. I have asked for help from her several times now this past month, and I feel put on the shelf every time. We have an actual appointment next Thursday, so hopefully she will change his meds.

When he is up and out of the house, he looks great. Everyone says so. He doesn't look depressed, and he looks like he has returning energy. But at home, this is not the man I see.

I just want to cry.

I called his radiation oncologist yesterday, and he said that this was really in the realm of the psychiatrist. He has been my steady support through all of this, and now I feel shelved by him too. And alone. Not sure what to do, because whatever I am doing now is certainly not working.

It is not like he has been given bad news. Death is not knocking on his door. But he is afraid the cancer has traveled, so I guess he has put his life on hold until he is told otherwise when he has his pet/ct scan after Thanksgiving.

He is afraid to eat because it will taste bad. He is afraid to have cans through the peg because he might throw up. He doesn't want to do any of the hobbies he formerly enjoyed. The RadOnc said I need to make a plan for Kevin that we will discuss at our appointment on Thursday to get him up and around and out of the house, but I am at a loss of what to put on this plan. Nothing that I suggest will he agree to do. He is a stubborn man.

It is so hard to put so much focus and energy into helping the man I so desperately love to feel better, and in return I am left feeling injured and resented.

I really am not bossy in my requests. I say things like "sweetie, have you swished and spit lately? You might cough less if you did that." I have bitten my tongue as much as I can when he says hurtful things, and I am sure he doesn't mean to injure me when he snaps.


Karen...caregiver to husband, 49 yr. former smoker quit 6/14/09.
DIAGNOSIS: 6/15/09, SCC BOT prim., + R neck lymph nodes--HPV neg/P16 pos
PEG IN: 8/13/09, OUT: ?
TREATMENT START: 8/18/09 cisplatin x1, then carboplatin/taxol x5 + 35 rad
TREATMENT END: 10/7/09
FOLLOWUP: after Thanksgiving 09