I feel like a traitor even posting this. My husband is the one dealing with cancer. But, I'm here watching him each day along with our two young sons. I'm mad! I'm so friggin' mad that I can't see straight. Ok, maybe I swing from absolute depression, to anger, but never any peaceful feelings or, god forbide, happiness. I'm TIRED. And I'm tired of being the strong one. Am I awful? I hope not, but I don't want to hurt my husband's feelings by talking about it. I pray every night that our life will get back to normal, but I'm more intelligent than that I guess. It's a fairy dream. I guess what I'm asking, is for others to tell me whether I'm a selfish asshole, or if this is normal. He doesn't take any control of his condition.....I'm the nurse, plus cargiver of the kids with no help within 300 miles. They've been here for part of his surgeries, but as a whole, it's just me. When they call, it's to inquire about him. Which I totally understand, but what do I do???? I'm tired of crying.
Mandi

Hi Mandi.......When I was going through my surgeries, treatment and then a long long recovery I often thought that I was so glad this was happening to ME and not my husband because I wasn't sure I could be as strong and helpful as he was. I wasn't sure I could be the "perfect" caretaker, if there is such a thing. I've always thought that as bad as cancer is for the patient, it has to be 100 times worse for the caretaker. As a caretaker one must feel so helpless, so much out of control and yes, everything is left up to the healthy caretaker; it's a tough job. No, you are not an asshole for feeling as you do, you're human with a heavy load to carry. You have never done this before, its a new experience and a very difficult challenge. Someone you love deeply is hurting and there is nothing you can do but be supportive and pick up the slack were it's needed --- and there is plenty of that with a sick husband and two kids. This too shall pass. This life you're living now will not contiue on forever and your husband will get better. It just takes time. Healing and recovery can take a long time, but slowly, one day at a time you will begin to see improvement. Don't ever think this is a permanent situation because it isn't. It really isn't.

The American Cancer Society offers many many different support groups. I am not a joiner and I usually shy away from support groups but as I said in my post to Rosie, I also had a 13 year old son whom I felt needed someplace to vent, someplace that would give him a positive spin on the whole situation he was going through at home and most importantly he could see for himself that not all people died from cancer and that things would get better, back to his normal. So while my son was attending his Kids Konnect meeting my husband and I were in the other room attending a cancer support group ourselves. Mandi, it was one of the best experiences I had when dealing with my cancer. I would encourage you to find a support group to help you with some of the emotional things you're going through right now. It will be helpful for you to find a voice in all of this -- and you'll meet people who are feeling the exact same way you may be feeling right now. As much as the support group helped me, it helped my husband, the caretaker even more. I had some idea how difficult this whole cancer situation had been on him, but hearing him talk freely about his feelings in a safe place was good for both of us. You don't have to bare this burden alone, Mandi. And speaking from my experience with The American Cancer Society, you won't find a nicer group of people doing their best to make a difficult situation just a bit easier for all those involved. Additionally, they may offer services to help you out with day care or housekeeping. Here in Minneapolis The Am. Cancer Society will pay for housecleaning on a monthly basis. Every little bit helps.

Things will get better, Mandi. I know there were times during my treatment and recovery when even I didn't think I'd ever get better, but I did. Your husband will too. Keep posting! Sincerely, Donna

Mandi,

My husband has had surgery and is at the end of his radiation treatment. I feel about the same as you, so I think it is normal. My boys a both teenagers and I feel like I need to keep it together for them, but it is wearing very thin. We also own our own bussinesses, so I am trying to keep up with that too! My husband is working trying to help doing the best he can. I do feel guilty complaining because HE is the one sick not me. I have been thinking about getting some help to get me through this. To me this feels like our lives will never be the same, and all this will NEVER end. Thanks for posting and asking this question because you made me feel a little better, I now know someone else feels the way I do.

Mandi, Please don't be so hard on yourself. I know how you are feeling.......I really do. As a caregiver to my husband, this was all thrust upon us as of last August. Before that (oblivious to the cancer that was befalling him) - our lives were so different. I was a different person in retrospect. Much happier, more carefree. Now with each passing day - I am grateful that my husband is here with me and for the blessings we have...but I also worry so much about the future, and what it holds. This whole cancer thing and how it has rocked the boat is always on my mind...24/7. I have learned to deal with a lot of the aspects of it...but the fear and uncertainty is something that I have a hard time with. I have no children, but I do have a full-time job to manage and being a caretaker all the hours of the day and night. It's frustrating....but never, never would I consider my husband a "burden" in any way to me. It's just when I think back before August 2002 - how things were so much better and I yearn for those days to come back. Like you, I know in reality, life will never be the same and it's something we both have to deal with. Thanks for bringing up this topic - it seems quite a few of us needed to get this off our chest! Hang in there girl - you always have a "shoulder" here in this forum to cry on - or to just let loose and holler!

I know I'm from the patient's area on this one, but several years ago I was on the caregiver's side of the fence, my first wife had malignant melanoma, eventually passed away from it.

Mandi, Donna, cnilson, you are all feeling NORMAL feelings. I learned a couple of things from my experience from my first wife I'll share if it helps.

First, even though your partner is ill and needs your help, you have to take care of yourself first. That may sound cruel, and it doesn't mean that you should't take care of your partner or neglect them, but make time for yourself. You can't be a good caregiver if you're mentally and physically shot. In our case, with oral cancer, we may not be able to eat solid foods. Don't feel guilty about chomping down on some good food. You need the calories and nutrition also... plus you need the mental comfort of the good food.. feeding both body and mind.

Toward the early stages of my wife's illness, I managed to cook big meals, and went to the gym 3 times a week, basically built myself up. Darn good thing I did, because at the later stages I would have completely been tapped out physically with runs to the hospital, nursing home.

Second, see if you can find a support group of caregivers. This group should be caregivers exclusively, and excluded patients. That way you can talk freely, and you'll find out no, your'e not an asshole for feeling the way you do. There's a nationwide group called Wellness Community, that was set up primarily for cancer paitents, but also has support groups for caregivers. I was lucky enough to be able to participate in one of those, and it was a tremendous help. Strangely enough though, our caregiver support group at one time had a higher mortality rate, mostly due to stress related illness and suicide, than the corresponding patient support group. So, apparently the stress of being a caregiver can be fatal also.

Do something away from your partner... Shopping, movie with friends, etc. Take a little time to get away and forget the situation.. recharge the battery's, get out the frustration.. Mine was just hitting golf balls, or hiring a flight instructor and taking flying lessons for a couple hours. Anyway the golf vented my frustration (as I hit the ball, mentally thinking "here cancer, take that") the flying required complete concentration, shoving other problems, situations out of my mind. At the end of the lesson I was wrung out mentally, but emotionally I was re-charged.

Anyway, just some suggestions from someone who has experienced both sides of the coin. Neither side is fun to be on, we just cope the best we can.

Hope this all helps, take care of yoruselves.
Bob

Hi Mandi,
What you are experiencing are the stages of grief!
It is normal to grieve when anything in your life if altered, not just when people die. It is normal to grieve for the life that you had before cancer came into it. We, and probably everyone on this site, understand your pain. Stages of grief include denial, sorrow, bargaining, anger
and finally acceptance. You can be operating on several different levels of these simultaneously and they don't neccessarily happen in order. My wife recently started counseling to deal with it and is finding a little relief. Hang in there - you'll eventually find acceptance. And maybe a support group in the meantime to get through the rough spots.

Bob and Gary...thanks for the advice. I know in my case - It can be so overwhelming at times - I feel like I'm losing my mind! But I try my hardest to keep things in perspective (although at times I can't help but be a complete basket-case!). Anyways - thanks again for everything.

Bob - As a personal note, I would like to express how sorry I am on the loss of your wife. You said she had passed away from malignant melanoma - this struck a chord with me, because I lost my brother at age 50 to the same disease. He lived with this for about 2 years - but in the 2nd year this disease had quickly spread like wildfire throughout his body. I lost him in 1997, and my dad in 2000 to complications from a stroke. Anyways, what you said about feeling free to "chomp away" at food even though the "patient" cannot is something I know I had a very hard time doing in the beginning of my husband's illness/treatment. I had incredible "guilt trips" snacking on things I know my husband loved but couldn't eat - like potato chips for a snack, or even a juicy steak. Even now - although I am feeling more comfortable eating around him, I am still careful on what I buy and still feel bad when I bite into something I know we both love - but is on his "no-can-do" list. When my brother was ill with the melanoma - my whole family altered everything, so my brother wouldn't feel left out when we ate - but the guilt we had eating around him was enormous, because in the later stages of the disease - he couldn't even manage a few bites of jello. In the beginning of his diagnosis - he was on a strict macrobiotic diet - lots of veggies, fruits, and tons of homemade juices - carrot and apple, garlic, you name it - he had it - but even as "healthy" as all this was - it didn't do any good in the end. Sorry if I went on so long about this - but with the loss of my brother and my dad - and now my husband with this whole cancer thing - it's just a way for me to vent some pent up aggravation. Thanks for listening - and thanks again to you and Gary for the helpful advice - I hope all caregivers will take this to heart and will be of comfort to them.

Donnajean, I know what you are feeling some days I hate to wake up I too am a caregiver and some days I wake up and wonder what I am going to do with the rest of my life. My husband is in the Pallitive mode at this time and everyday I wonder what it will bring. They can not do nothing else for him so I watch him waste away to nothing and accept the phone calls from concerned family and try to deal with all there questions on how is he doing is he eating and so on and I just want to say if you want to know why don't you come by and free me up so I can have some time to myself? Then the guilt overrides the need and I just go on like everything is alright and cry while I am alone washing dishes, Mowing the lawn, taking out the trash etc etc I love my husband very much but I guess I am scared of what tomorrow is going to bring also. So hang in there and vent when you need to and life will hand you only what you can bear. I really try to take good care of myself also but it is hard when you have no one to eat with or no one to talk to. You are in my prayers as everyone here is. Bobbie a caregiver

Hi Bobbie, Nice to hear from you. I am sorry to hear of your husband's condition. It is rough dealing with all of this, as you very well know - and I remember how incredibly bored and lonely I was when my husband was doing his in-hospital treatments. After work, all I did was come home and plop myself on the couch (by the phone) and wait for him to give me a call - and when he didn't call I was a nervous wreck. I would visit him as much as I could - but it's amazing how "different" a home can be without the usual day-to-day activities when a loved family member isn't there to share things with you. I lost interest in a lot of things - I didn't want to watch TV, I had no appetite to speak of, chores got kind of kicked to the curb and my favorite pastime - shopping - didn't even excite me. (and anyone who knows me, knows that's BAD!). As far as the "crying spells" - I never cry in front of my husband - but even now, out of the clear blue - even when things seem to be going smoothly - I start to cry for no apparent reason - I catch myself and pull myself together quickly when this happens, because no matter what - I have to be strong for my husband and I can't let all this get to me - or I'm sure I would have a nervous breakdown. Anyways Bobbi - you hang in there and be strong, and also know you can let out as much steam as you feel necessary here too. God bless and take care.

To all of you caregivers

I too have experienced all of the guilt anger and frustration you have. I've spent my adult live as a nurse and it doesn't prepare you for anything when the illness is someone you love. I've watched my husband suffer since Nov. and he has completed his chemo and radiation one week ago and MRI in a month. My nursing knowledge is a hinderance because everyday the thought of Is it worth it? comes back and I wish he'd find some peace.He is determined so far to continue this horiffic battle. Do I feel guilty yes daily angry that too but I continue to function with a full time job and a 15 yo daughter.To be truthful it is my saving grace. I act like I have great hope and am very supportive but the negative attitude of this being a losing battle keeps coming back.So I look to this forum and always find something that helps. Everyone of those here suffering and their frustrated caregivers give me something to make me continue to try and I am forever grateful to each and everyone of you.
Diane