Lily, my husband took really good care of me while I went through surgery, rad, and chemo. Not until I was well again, did he have a serious heart surgery, where I became the caregiver. While I was the perfect patient (grin), he was NOT. Part of this is the male desire to be in charge, I am sure. His condition was not at all the same as cancer, but I learned that I had to just back off, and let him do what he wanted. I made sure he ate and had the proper meds, and otherwise just let him defy doctor's orders as far as what he was not supposed to do. I think backing off is the hardest part for those of us who have a desire to nuture, but I have decided that the male brain is not going to allow us to do what we think is necessary. It is an understatment to say there were some raised voices (grin), but eventually everything got back to normal, to my amazement. I am sure your male patient is just asserting his "right" to make his own decisions. You are not fired, just usurping what he sees as his rightful place to decide what happens. Lily, you are part of a great sisterhood. We understand.

To Lily and all the other wonderful caregivers..


I sit up late at night ..not being able to sleep ,or should I say into the wee hours of the Morning..The strength,courage, determination and comapssion you all show is overwhelming and amazing. My heart aches and the tears flow for all that you go through...

While we as patients have our struggles and issues...you all have you own as well as many of ours.. I can't say which is harder nor would I even want to ..they are probably both in the same and def a situation I wish I had never been put into.

PLease know...I read this forum pretty much daily , nightly and whenever and it is a major reason I have been able to "cope". But It is also the compassion of you caregivers as much as the Pts themselves......You do it for us as well as your loved ones....You all are my caregivers too in your own ways...and for that I admire you. TO be able to get up and do what you do everyday and still come on here and be there for someone else..possibly a million miles away with a face you have never seen or a voice you have never heard......with the same compassion you give to the one you care for daily .....it is wonderful and please know that if your patient is angery or mean or anything .. I can almost be assured it isnt at you ..it is at this horrible disease that takes so so much from us ...like our ability to sleep for one!!! And you are probably the closest one to lash out to ,

and while it isnt fair ..it happens....So for all of you out there..Who deal with the hardhsips of being a caregiver ..Please look at yourself in the mirror...and try to see what I see......and I am sure you will feel somewhat a little better ..when you see that truley amazing person looking back !!

I can only hope..that if I have to go through this again ....( biospy results on thurs) My husband will be able to be 1/2 the person that all of you are...Honestly I don't have the most faith in that ..LOL...( the comapssion part throws him hahahaha) But I know that I will have all of you !


Shar

Shar, that was beautiful! and I needed to hear that. I know my husband cares deeply for me and this had been an awful time for him and our family. I think it is a male thing though. Most of the CG are women and it is indeed a sisterhood. I thank each and every one of them for sharing their expierences as it help each one of us to cope each day and the sun comes up weather we want it to or not. Praying for good results for you. LJ

Lily,

It took my husband almost 2 months after his last radiation session to feel even close to normal again. if your husband is on Fentanyl, that could also contribute to his mood: anxiety, irritability, and depression are all major side effects. If he has just finished treatment, he may be angry that he doesn't feel better yet. My husband thaought he would feel better in a couple of weeks, rather than months.

If your husband follows the same recovery pattern, he should feel like himself again by the end of the third month after treatment.

It was so hard to remind myself that it was the drugs and the pain and not my husband talking when he snapped at me. he told me he was sorry when he felt better - about 2 months post treatment.

Hang in there. It does get better.

I'm not sure it's fair to say most caregivers are women. I do think the women caregivers are more likely to reach out for support. It may be harder for men to be caregivers OR patients because they do not have that tendency that most women do to seek social support in times of stress. And this is a diease where you need social support no matter which side of the patient/caregiver equation you're on!

Nelie

Nelie - it may be because men have historically gotten oral cancer at a 5-1 rate, and still this year get it at two men for every one woman....

Well, it's true that would make it more likely that "most caregivers are women" I guess. Perhpas because I am on the wrong side of this equation (woman patient), I dislike the things that designate one role for one sex. I always bristled a little when I heard "band of brothers" used to refer to the group of patients here who'd been through radiation hell and I can imagine how it would feel to be a male caregiver reading this board and seeing the group of caregivers here referred to as a "sisterhood".

Nelie

Just wanted to add that I may also be a lot more aware of the strong role male caregivers have in caring for wives, mothers, and daughters because I've had breast cancer and there almost all the caregivers are male!

I too was fired on numerous occassions fortunately I had the support of wonderful friends to get me through my husbands battle with treatment...they laughed and cried with me daily. I often said if the cancer doesn't kill him I surely will. Then treatment was over and I was so expecting this miraculous awareness to take him over and enlighten him to be grateful for everyday and to appreciate me. It came but almost two years later. I am so glad now that I gave him the room to find his new normal. Still I never expected it to take so long. Be good to yourself and take breaks whenever you can.
Patience works but so does just a little self indulgence. It can really make you stronger.

I think men can be good caregivers when need be....Not to be sterotypical as I really try not to be..I think women by nature are nuturing ( of course so are some men) so it is just more expected...however ..I think it is expected of anyone who has a loved one in the situation. Some are just better then others.....I honestly can't IMAGINE my husband being as wonderful as all of you are and I hope to GOD I don't have to find out!! He is a great provider and a Good GUY ( when he wants to be ) But Nuturing he is NOT !

somtime I find him lashing out at me over all this !!

All said and done ..I just think this disease is just as much emotional and mental as it is physical maybe more so ....And it isn't a disease for ONE .....It is a disease that effects everyone around . Again I commend all of the caregivers out there .....you are a group among yourselves......to def be on a pedastal in my book !!!

Shar