Hi, Colleen
I recently read an article on Science Daily (which I cannot put my hand on at the moment) that basically said that if you physically acted happy (smile, great posture) it actually helped mentally. If you - AND your husband - can get out of the house for even a short walk daily it will start to help. I believe that one of the factors that helped my husband's recovery was that we walked our old dog (now waiting at the rainbow bridge) every day that it was not pouring down rain.

My brother-in-law also gave me a quick lesson on meditative breathing - that helped during trips to the doctor, and those bad times at night.

Best wishes - you both will get through this!

Maria

I think the process mentioned in the Science Daily article is also know as the "Fake it Until You Make It". . . . . . and it does work! One other thing that helped was when I took my son to see a really funny afternoon movie. I actually saw him smile, something I had not seen in a long time! Meditation, getting out, walking the dog (or borrow the neighbor's dog if you don't have one) all help to give both patient and CG a different perspective, and even if it's just for a little while, it sort of gives you a breather and a little renewed energy.

Fake It Until You Make It .. that does sum it up pretty well!

Also remember that while family can be wonderful, sometimes talking to a professional - a counselor, pastor or doctor may be what you need to do. I had a pretty spectacular RA flare about a year ago that would have been a lot less painful had I taken my own advice :-).

Remember, it is NOT being selfish to take care of yourself. It is sensible.

Maria

I can barely believe this is all normal ... But good to know--- I am at wits end and honestly have thought I can't go on...but then feel bad as its "him " going through this-the pain,the disability etc. then lately with him glaring at me ( not my husband at all) , which upsets me more than I can say...today after a very long day and night spent in the hospital with him -and up all nite, he glared and lashed out verbally...and had to bite my tongue ... It's like sometimes I feel I'm bleeding love and pain and strength over this too for him ,the strength being sucked out of me,until I'm zombie like.... It's like I go from hurt and scorned , to ready to kick him in the butt! Then I offer suggestions from this forum (that he won't go on)- buy the stuff people suggest and things , and does he try it?! I guess if it was me, I feel if I was miserable , I would try anything to make it better? Suggestions would be welcome. Difference btwn male and female perhaps? Idk

My son only joined this forum for a short time and only because I urged him. After a short time, he told me it depressed him to see what others were going through. He was already in therapy for depression so I understood. He didn't seem to want my suggestions and I thought maybe it was because I was his mother and being a 33 year old (at the time) it didn't go well with him to have his mother telling him what to do or even making gentle suggestions. So - I just printed out all the positive ideas I found here and I surreptitiously left the pages by his bedside while he was sleeping so he could "notice" them when he awoke. That way, it wasn't his mother telling him what to do. A couple of days later his attitude did improve.

Colleen, the only suggestion I would have is that if you buy stuff to try it out on your husband, just get the very smallest quantity if you can. I had bought the large economy size of a powder that would add calories (don't remember the name) and the health food store guy assured me it was absolutely tasteless but when I put about a scant tablespoon of it in my son's milkshake, and he took a very small sip of it, he said it tasted awful and would have no part of it. Tastes change so rapidly that something palatable one day can be completely horrible the next day.

" T" - If you get something together for Caregiver Survival, depending on what the admins think, I would love to put it on my own personal website where I have a section for OCF related information.

It's just as difficult, and definitely more for the patient, and there are two sides of the story. He is probably thinking deep, about life, the past, and the future. When diagnosed with cancer, all of a sudden you think, prepare for death years before many of your peers, significant others will, and that can be difficult, and some don't understand.

Maybe he is being treated differently than before. If he worked, now he is home all the time, which takes some getting used to for both parties. Maybe you would see each other a few hours each day, work, come home and sleep. Now it's 24/7. Maybe his or your routine is now disrupted, and now either has to cater to the other, compromise their routine, which can cause problems.

Maybe he doesn't like all the special attention you or anyone else is giving him, even tine of voice, and just wants to be treated normally. Sometimes it's the opposite, some friends may have disappeared, afraid to talk or visit, treating one like it's the plague.

I go to all my dr visits, tests, diagnosis, surgery by myself, always did. A few times a sibling went with me when I was in very critical condition, and I did not like it at all! They would speak on my behalf, dr speaking to them, like I was invalid or something, asking questions out of line, saying things that were not true, were misinformed, misinformed me, exaggerating, etc. I took back control real quick, and had a few arguments when one stepped out of line, argued with health providers, effecting my treatment or care. I can speak for myself, and more in tune with my needs than anyone is. There is a difference in being on the sideline to help, when asked or planned, but someone taking total control of everything without me involved, asking is not me, and many others, and would not let it happen.

Maybe he is worried about future finances, how the bills will paid. What if he can't work? how will you both manage, including continuation of health insurance.

Sometimes you just want to be left alone, and rest. If he needs something, he will ask or try to do himself.

Just playing the devil's advocate here, (because there came a time when I was that devil) it is also very difficult for the caregiver who desperately loves the patient and is in a quandary as to what to do - especially when her survivor refuses to take in nourishment or hydration, not able to clearly remember when his meds are due and taking some meds more often than prescribed - and she/he sees him wasting away and in some cases an emergency trip to the hospital becomes necessary. I doubt that in some situations, the patient really knows best. And who is to decide who knows best? For each of us it is a different situation and as a wise lady told me a long time ago from this forum - sometimes you just have to put your nurse from Hell hat on and do what you have to do. At one point in his Tx my son was refusing to eat or drink, and sinking deeper into depression. I finally got my courage up and told him that if he could not start taking something in, then I would call my daughter (a police officer with a gun) to come help me push him into the car and take him to the hospital to have a feeding tube put in him and he knew I would have done it, because I had the phone very handy. For him, that did it. He started eating and drinking again. Some people call this "tough love". Whatever it is, later when I was on the way home, I cried buckets in the car and almost had to pull over I felt so badly for yelling at my son who was suffering so.

Another point I think is important to make is that there has to be a method of recording meds, as well as everything that goes in or comes out of the patient. I made two copies, one for me and one for Paul and I suggested he could record everything so we would both know whether he was on schedule with the meds. We did get to a point where the doctor would not renew the pain meds any more and Paul took to overloading on Ibuprofen. When I saw how much he was taking I called the doctor and was told he was taking way over the daily limit that was safe, otherwise it could damage his liver. I had to hide the Ibuprofen in my car and only give him small daily amounts in the ibuprofen bottle. As a caregiver, what works for one may not work for another. Being a caregiver is a learn-on-the-job activity. You try different things until something works.

Both comments as patient and as cg right on.... Trust me I KNOW this is hard for him . we have been married 25 years... I can see..., and I know it's hard on caregiver as well and you can't fully appreciate what the other goes through unless you have done it before yourself, I get it. My heart is breaking for him.Literally feels like my heart is being cored out of my body watching him suffer so, and wasting away. I purposely am careful ( trust me) what I say/ do as he does not want to be mothered, treated differently etc. but what do you do when they are hurting themselves, sometimes you have to intervene.....we just came home yesterday from having a fdg tube in ( 50 lb weight loss) and he took 1/3 of what was prescribed yesterday, and just announced that's all he's doing today too?! Okkkkk? So why did we bother getting one? Apparently sips of water have been working so well?! He told me he was the patient and to leave him alone. I gave him a copy of his orders and said he might want to review calories and water recommended on a daily basis first and we are now leaving him alone... If looks could kill, those glares would have done their job a long time ago! So what the heck... Am I supposed to let him loose another 50 lbs.... ? Was hoping he would get some calories on board -and some good fluid intake before Tuesday when we are supposed to get final chemo ( which has already been held once)...

Thanks Colleen. I may be difficult to some, but I'm not, we'll, lets be polite, and say be unwise. I know my illness pretty well, side effects, treatments, but know when to raise the white flag lol, and seek help, and most always listen to, and follow my doctors suggestions, advise.

I also know what it's like to be a caregiver, and see a family member suffer, die. I had three brothers suffering illnesses that either paralyzed or severely debilitated them, causing their deaths at young ages, 26, 48, 52. It was not easy after two had passed, Then felt disappointed for my third that I coud not help for a while when diagnosed with cancer, and unfortunately, he passed away from a UTI two months later, while I was in the hospital myself, near death from chemo. I felt guilty I wasn't around, thinking things may have been different if I was, and believe my brother was so worried about me, he did not want to trouble anyone, but it went too far, and shut down his kidneys. I could not even go to his funeral being in critical condition, and doctors would not let me leave. I has to grieve his loss from my hospital bed, and finally went home 4 months later. Its difficult even now, three years later.

So sorry for all you have gone through. We too have had our share of loss and pain. None of us know why things happen or what is in store for any of us. But it is hope that we must all keep.