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

Diane, I understand completely. I think from the moment we first hear the word "cancer" - our instincts direct us to the negative, and the thought of it being a "losing battle" always rears it's ugly head. But since your husband is determined to forge ahead in this battle - that should give you the strength and motivation you need to continue on with hope in your heart. In spite of all the terrible aspects of cancer - I still believe there is always hope. And as hard as it is sometimes to go through this as a caregiver - I know I would never give up - as long as my husband is willing to fight this battle - I am too. It's ironic as my husband has mentioned - that he survived Viet Nam as a young soldier back in the late '60's - been shot and wounded, had tropical sprue, malaria and to this date other health issues including PTSD...only to have to wage a battle that is going on in his own body. But anyway, I just wanted to say...be strong, and hang in there...you're not alone and neither is your husband. Take care.

Thank you all! You have no idea how hearing from you has made a difference in my outlook. I was starting to think I was a monster.

My husband has stage III left tonsillar and base of tongue cancer. Only 8 weeks out of RAD and chemo (no dissection) we found a spot on his right lung that was suspicious. There was no easy way to biopsy, so a lobectomy was performed.

It has totally taken the fight out of him. After braving the prior treatments without using his PEG once, the second occurance was too much.
I've seen him endure the lung surgery (with a benign result) only to develope a resigned attitude. When we should be celebrating the good news, he is depressed beyond words and refuses to eat. I know it is part depression, part anger.....part pity. I just want to shake him and love him to death at the same time.

That, coupled with the care of two boys (9 and 12) were about to get the best of me. Thank God that I found all of you. You give me hope for a better day.

I will definitely look into a support group. I guess I always knew they were there, but "I could handle it".

Love to all,
Mandi

Hi Mandi,
There were some really bad days that I thought about giving up and then the next day I somehow pulled through it. I found myself on my knees a lot and without God's help, I didn't have the strength - but his strength is perfect. My faith got me through some very hard times.
Just because you lose an occasional battle doesn't mean you have to lose the war. I just finished reading Lance Armstrong's book and he had cancer in three places at the same time, not only lived to tell, but won the Tour de France 4 times afterward! I too have bounced back and forth between depression and self pity. I would talk to the oncologist (or whoever coordinated his meds)and see if there is something that will help - even counseling. This is a very humbling disease. Since our spouses are "mirrors" of us in many ways, this may help to explain your confusion and depression also. I will probably start cognitive therapy pretty soon myself (at my wife's urging).

Mandi, you are NOT the monster! This disease is the monster. You are a devoted, loving, caring wife and mother. Your strength, support and courage will help your husband in ways you may not even realize. I have heard it's true that many cancer patients experience depression - and this is something to definitely discuss with the doctors. There is treatment and help for that. A family's world is turned upside down with this diagnosis - and there is so much to absorb with all the questions and answers, treatments, side-effects, follow-up tests, emotional aspect....and the never-ending sense of uncertainity about the future. It haunts us all to some degree or another. But you are showing great strength in handling this - although you may feel like a complete wreck - just keep being the great wife to your husband as you are. In time you'll see - things will get better.

I agree with all the posts right above mine here with this addition. Post treatment depression is a reality, especially for a second time event. I know in my own case if I had not been put on anti depressants, (Paxil) I would have put my head in the oven. He may need counseling with a doctor trained in survivors, and capable of writing the Rx for a serotonin reuptake inhibitor. After about 3 weeks on it, my mood and attitude did a 180 turn.......

I have Dennis on an anti-depressant. Zoloft-50mgs once a day. This was prescribed before the cancer was diagnosed, but he continues to take it.

I'm at a stalemate with wondering where this disease ends. I know it is a survivor's platform....but what about those who are wondering about whether they are seeing their loved ones die? This is what I'm dealing with.

I see him sleep 18 hours a day. (a man who never slept over 6 a night) One who worked at least 12 hours a day and pulled most weekends. Now he can't fill the bird feeder in the back yard.

Has anyone been told what the signs are that your loved one is not getting better? Has any doctor come up to you and told you what is really going on?

Mandi

Without seeming to dismiss your concerns, perhaps more than one person in your household is clinically depressed and in need of some assistance. It is something that you might consider for yourself, and it is not uncommon for the caregiver to be under as much stress as the patient, enough to sometimes require medication to get things back in balance. I don't remember how long your husband has been out of treatment, but using myself as a scale, I was 8 months out before I really wanted to spend anytime out of the house, most of that time I was laying around, napping, sleeping an interrupted sleep all night and into the late morning, (up with meds, bathroom, etc. on and off all night long) and watching TV, feeling weak, depressed and basically like a slug with no energy. The treatments took the wind right out of my sails. When I did start to come back it was a short walk down the driveway, then a week later down the street, then a week later around the block. It just doesn

Hi Mandi, How long has your husband been out of treatment, or is he still currently going through it? I can tell you honestly that my husband also sleeps "all day" literally, except occasionally getting up for the bathroom and to have a small meal, etc. I think like Brian said, your husband...my husband...and anyone else going through this, are most defintely changed people. And we, the caregivers are changed too. Let's face it - this is a life-altering experience, not just for the one battling the disease - but for everyone else in the family as well. Like you, when things seem especially bad for my husband - I can't help but think the "worst case scenario" - and Lord knows, everyime I turn around - I don't know how my husband is going to be feeling or what mood he is in. For the past 2 days now - along with the other problems - he has had bouts with nausea and vomiting and a "pins and needles" feeling in his stomach. When I hear things like this - it's so easy to lose your head without getting a professional's opinion as to what's going on. I guess what I'm trying to say is - I realy do understand how you feel Mandi. But I am learning not to stress myself out so much without getting the facts. It's oftentimes, easier said than done...but I'm doing my best to handle things, as I know you are as well. We just have to be strong and keep forging ahead and look at life from a new perspective. I'm not saying I'm some kind of "ms. sunshine" always upbeat and whatnot - I get in the same depressing rut about this a lot too. But for the most part, I'm trying to keep my wits about me - as I'm sure you are trying to do too. I hope this helps you to some degreee. Take care.

Wow! It is really extraordinary when you just "happen" upon a thread that hits home and you think you are reading about your own feelings and emotions, but theyr'e someone elses

Brian,
I appreciate your concerns, and yes, I'm also being treated for depression. It is something that I've dealt with for years, and many things have happened lately to test my stability with the condition. But, I really feel as if I'm going through all the emotions that my husband has but won't question. You are right.....(as always! I will take a list of questions with me on Tuesday when we see the oncologist. Hopefully that will clear many of my concerns.
Thank you,
Mandi

Mandi and all other replys
Everyday is a challenge you think your having a positive day and then something slams you. I still am able to not show any of the concerns I voice here to my husband and daughter but here i feel free to let it out. Believe me you are all my saving grace. Another nurse in work helped a friend through this battle and just learned all the treatment didn't work and the next step is unsure. My husband is going for his MRI next week.
All I kept thinking today is is he going to have to go thru more? My good old rational self knows everyone is different. But my doubtful side gets in the way and says no more misery please. Your all right about this being a total life altering experience .Believe me I still intend to keep my best positive side out there for him and my daughter. I just need this outlet to vent so I don't explode. Thanks for the opportunity.Since I can't say it to anyone this really helps
Take Care all
Diane

Hi Diane. Your comment was very well put. It's like some things you just can't talk to your friends and co-workers about. It's not that they are uncaring people - but unless you know someone who has had a person go through this type of cancer - people just don't understand what we're going through. I have my mom and siblings - and since I had a brother who passed away in 1997 at age 50 of malignant melanoma - they DO know what cancer can do to a person. However, they don't see what my husband has to go through with the constant, never-ending phlegm problem, the swallowing difficulties and choking, etc. that are exculsive to head and neck cancer patients. So what you said about this site being an outlet to vent is so true - what a blessing for this - otherwise there would be a lot of "exploded" wives around the country! Wishing everyone here all the best always. Take care.

This is a very good thread. I am going through the same issues as others...worrying about the sleeping, slow progress, etc. He is almost 6 weeks post treatment and we both had expected him to be further along by now. I don't think the doctors adequately prepared us - maybe they didn't want to discourage us since we were so looking forward to the end of treatment.

I think that the other dynamic that sets in for caregivers is exhaustion. I know that in my case - and I assume everyone elses - I have had to take over doing all the things my husband used to do as well as keeping up with what I have always done. Then there is the insurance mess to wade through and the added financial stress of being the only wage-earner. By the time I go to bed at night, I often wish I would just quietly die in my sleep. Then I get up the next morning resolved to do the best job possible coping with what has been handed to us.

Here is quote from Amelia Earhart that I like: "Courage is the price that life exacts for granting peace."

Anita

It's amazing how we all have the same feelings and are able to vent them here . I also get overwhelmed by all of this and sometimes go to sleep at night hoping his suffering has ended and I just find him dead in the morning.Do I feel guilty oh yes but realistically enough is enough and if he goes for an MRI and he"s not cancer free what else are they going to put him through. He choses not to take the antidepressants he was perscribed and his mood truly shows it . I drop hints but get nowhere because basically it's his life and doesn't take pain meds just the xylocane viscus again his choice. But this leaves me stuck watching his agony.I will be continuing to show none of this feeling to him That was one benifit of 21 yrs as a nurse I'm pretty good at it. Again thanks to all of you for allowing me to vent. If it gives anyone support who also has these feelings to know your not the only one I'm gladTake Care Diane

Dear all,
I never thought that my "selfish" attitude would have such an impact. I was so scared that I was the only person here dealing with the stress this closely. I was honestly worried about being black-balled.
Thank you all. You've made me feel stronger. I think guilt had played such a major part in my outlook up until now. I had to be reminded that I'm not alone. We are all waging this war on an hour to hour basis. Granted....some hours are easier than others.
It's hard when you are optomistic, and it's worse when you are pessimisstic (sp?) Life intrudes and gives you a daily wake-up.
But, thanks to this forum, we are all in good company, and I'm glad that I poked the bubble of faith. Of coarse we all have it, but it feels threatened at times.
God Bless,
Mandi

I read this thread yesterday, and I`m going to echo Brian, I think there`s a lot of clinical depression going on here. I think about the newly diagnosed people and their caregivers reading this thread, and I want to tell them that all caregivers do not feel this way. I am truly thankful each and every day that I can make Frank`s journey a little bit easier. I realized I`m not the star of this show we call life, I`m a supporting player. Am I on antidepressants, damned right I am, we`ve been in this fight for 5 years,no, it does not get easier,it feels like living on the edge of hell. Would I trade places with anyone else in this world ? No, I wouldn`t. I can`t even imagine living inside Frank`s life,or accepting all his loses. So many of us caregivers beat ourselves for not being able to do more to help. I have never ever resented any of this,I`m just thankful that I`m on this journey with him.Every minute of every day is a blessing. So, please to all the new folks joining us on this journey, understand that we all don`t feel the way that the previous posts indicate. Depression clouds the sky, and there`s a lot of darkness in these posts, and to all caregivers who are feeling badly, please get some help, for yourself and for those who need you.......Dee

Dear Dee and Mandee

There is a big differrence between depression and frustration from watching someone you love in agony. The topic is coping, fear and anger . Dee I'm glad you are coping well and hope you continue to do so. Mandi the purpose of my answering your post was to help you and myself vent. We cannot vent this frustration to the person who is struggling to survive or to our chidren. Here is a good place. Not everyone choses to speak to a professional or take a pill because life is rough and you can't at that moment see the end of the tunnel. So you let it out in this manner and puff for the moment it's gone. Mandi if you were clinically depressed you would find it difficult to get out of bed to care for your 2 kids and husband. Please anyone reading this area do not take this as a feel sorry for yourself caregiver club . All sides of this stink for all envolved and I'll gladly admit it.I also hope noone feels guilty about their postings and Dee we all have different opinions and do continue to make each day a blessing for the ones we love.
Diane

I have to agree with Diane - there is a big difference between depression and just sheer frustration over a loved one's misery in coping with this illness. I love, appreciate and cherish each and every moment with my husband, and don't take any day for granted - like I used to. I don't consider myself "clinically depressed" - but I am depressed only in the fact that I wish I could do more to help my husband - and the fact that everything takes a lot of time in the healing process IS depressing and frustrating! I know that there are some people who's spouse is diagnosed with cancer - actually bail out and leave that person, at a time when that person really needs the love and support of their mate. I would never leave my husband - and will do all I can to help him - but I am just so mad about this disease and how it turned our world upside down - that it's good just to let it out in a forum where people really do understand! Like I mentioned in a previous post - friends and co-workers, as well-meaning as they are - do not realy understand and see how this effects a person in their day-to-day lives, as only the one that is going through this disease and their loved ones know.

Donna Jean

I think you worded what I was trying to express much better than I did.Hopefully this will allow others to vent in this forum without feeling guilty about their internal aggravation. So we can continue to give the ones we love the love and care they need.
Diane

Dear Dee,

I never meant to insinuate that I'm bitter over the fact of caring for my husband. Just the opposite.....I love him so much that it hurts.

It hurts to see him go from a robust 180 to 135 in 6 months. It makes me cringe to see him struggle to swallow. It tortures me to watch him gasp for breathe when he sleeps. It pains me to take his boys to baseball practice because he is too weak. It kills me to have to promise him that they will not put in another feeding tube, because he can't handle it.

My intention was never one of bringing other caregivers "down". Only to assure them that they are not alone in their feelings, if they happen to be less than "up".

You are blessed to have the outlook that you do. I am only looking for the same strength that you have achieved.

Until then, I hope I can rely on others in this forum for help.

Mandi

Hi Everyone:

As I have been following the current thread about caregivers and their feelings, it occurs to me that maybe we are getting a bit caught up in the semantics of depression vs. "being down" when maybe we should focus on the underpinnings of what the feelings really mean for us.

Everyone that has posted has echoed the same sentiment in one way or the other. It is an overwhelming, exhausting, and at times, overpowering experience to be with and care for someone you love who is undergoing cancer treatment. Like the person undergoing treatment, the partner/caregiver doesn't get much sleep because he/she watches, listens, and waits to be sure all is okay in the middle of the night when breathing is often difficult and sputtering and choking replace snoring as "normal". But, both the patient and caregiver still get up the next morning and go to radiation, go to work, and fundamentally do what needs to be done to feed and care for children. In a sense, both are survivors in the process and should be honored but often aren't because the "patient" receives most of the sympathy.

There are indeed days when caregivers are too overwhelmed and exhausted to function and respite from friends and medications are often helpful in those circumstances. As Dee mentions, medications can enhance the caregiver's ability to be present to the client and help calm the fury of fright that is always present in the caregiver's mind.

I remember trying to share with Dave how I was feeling mid-radiation, and while he understood where I was at, he was simply too physically and emotionally drained to be present back to me which was difficult and at times, made me angry then guilty for feeling angry.

Overall,the hardest part for me was the sense that despite sudden adversity, life goes on in mundane ways such as sports practices and paying bills. I stood in many a cold hockey rink at the crack of dawn this past winter wondering when it would be light enough out to call and check on Dave who I had left "sleeping" at home. I probably would have left an open phone line beside him if I could have just to calm my own pervasive fear and worry over "divided allegiances" to my children versus Dave.

During that time, I felt all of us around Dave were vulnerable and when I finally realized that I could acknowledge it,work with it,talk about it with my kids,and go forward. The epitomy of my neurosis came one morning when I took my kids out for breakfast and couldn't reach Dave for the big "check in" phone call. My oldest son picked up that I was exhausted and becoming out of control anxious(not a good combination for moms on a good day let alone a mom with a partner having radiation) and he calmly and sweetly suggested I drive back to our house and check on Dave while the boys would stay at the restaurant with my family. Such wisdom from the mouth of babes! My son focused not on what was wrong with me but on what was right about my love for Dave and the message got through and I was so very proud of him. Of course, I drove back and checked on Dave who verified that I had finally lost it and then thanked me for being crazy enough to care so deeply about him.

Part of what got me through the hell of radiation was to share with my boys(11 and 6) how I felt and how very scared I would be if one of them were sick...but how very present I would be just like I am for Dave. Role modelling love comes in many unexpected forms and here was one way I surely didn't sign up for but the lessons Dave and I and the boys have learned are invaluable. When one member of the family is ill...the whole family unit becomes ill. Mandi, at some point, this hell can be reframed as opportunity. Time heals... and right now,Mandi, you need more time.

Frank & Dee-you guys remain my heroes for the grace and dignity you demonstrate every day.

In short, there is no magic recipe for wading through this high water-but maybe one isn't needed because somehow, somewhere, with help of meds or not, but mostly with inner resolve and love for our partners, we do it and get through it...every day...and I'll give all of us caregivers a pat on the back and say we do it well.

Sharing the oral cancer experience with Dave has taught me that having a situation look pretty on the surface or run smoothly may no longer be a necessary goal for me. Instead, finding meaning in the joy and pain that is real love and sharing it with others is far more meaningful.

Okay, I'll get off the soapbox and give someone else a turn.Did I mention I also learned I'm irreverent when it counts and seemed to have grown some testosterone based appendages that I'm really proud of...?

In Solidarity,

Kim

[quote]Originally posted by kcdc:
Hi Everyone:

Did I mention I also learned I'm irreverent when it counts and seemed to have grown some testosterone based appendages that I'm really proud of...?

In Solidarity,

Kim [/quote]LOL, I don't think you have or you wouldn't refer to "them" as appendages.

Kim,
Your post is so insightful that I think I'll print it and post it beside my desk...to read during those times when fear and loss of confidence sneak into my day.

Thanks,
Anita

Okay, so maybe I can't really function as a male if I can't get my references to anatomy correct!

Anyway, thanks for poking fun at me (god knows Danny G does it all the time!).

Thanks also for the kind words from Anita. The pedestal you elevate this message to is a bit lofty but I humbly accept the praise with gratitude. It's easy to speak from the heart when you have had good mentors-and Dave. my boys, and the trusted circle of friends here at OCF continue to amaze me with their wisdom every day.

The other thing I meant to say earlier and didn't is that the post-treatment "watchful waiting phase" becomes almost more of a curious hell for caregivers than the active treatment phase is because the survivor has survived and relaxed some while the co-survivor/partner remains on high alert. I'm still trying to figure out how to process my feelings around life in the post-treatment zone.

Kim

Kim,
As you know, I live alone and mostly cared for myself throughout my ordeal ( with my mother, sister and girlfriend, who was busy with her own family and career, nearby ). I didn't have any actual caregivers around all the time to yell at and take my frustrations out on. Not a bad deal really...I only yelled at my mother and sister in the very beginning!

Danny G.

Kim,

I need to thank you too, your post brought me to tears and gave me strength in knowing I am not really as alone in this as I appear to be...I think I will follow Anita's lead and print it out for future inspiration. My husband is still in treatment (30 rads done, 13 to go!) and we still face the likelyhood of a neck dissection, but I'm already anticipating the "watchful waiting phase" because I know it will be a difficult time too. I think I keep looking for "and end" and what I need to keep in mind that there is really no end...and that is probably a good thing.

Keep the faith everyone...
Jan

Well All, I stayed away for a couple days, cause I didn`t mean to offend anyone.......to Kim and Dave, who have met Frank, thankyou for your kind words.....After being called a freak a couple of weeks ago, he needs to hear good things. An unplanned trip to the doc`s this week brought us another abcess. We have a clothes basket full of medical supplies....We both have come to realize the light at the end of this tunnel will probably be that bright one Frank sees, if you catch my drift...If you take a look at his picture,you can see the results of 7 surgeries in less than 2 years.....and yes, he limps because his leg bone is now his jaw bone....but right now he`s excited about the return of the hummingbirds to Downeast Maine.....he has managed through all this crap to regain the wonder of childhood.....he has never once complained about losing the ability to eat or talk or smell his beloved lilacs.....he has managed to go from 118 lbs, less than 2 yrs ago to 180 lbs with a peg tube.....for awhile he was stuck on blue pepsi `cause he liked the color.....I can truthfully say that he has won the battle with cancer, even if it takes his life, he truly has gone beyond the physical....if you asked him, he would just say he`s doing what he can, he doesn`t consider himself a hero, but he truly is on the hero`s journey, and I feel like the bumbling sidekick. We`ve fought lots of monsters but that`s part of the journey. We still have a healthy, although warped, sense of humor. We decorate him for holidays, latest was bunny ears.....we don`t look for the light at the end of the tunnel, but we stop at every little twinkle along the way, and from the bottom of my heart I feel truly honored to part of this journey.........again, thanks Kim for your kinds words, will tell Packer......to All Be Well.....Dee

dee
By no means was I offended by your words. You express yourself beautifully and both you and your husband are heroes in this journey whatever the end of the tunnel brings you are both blessed to have a great love for each other and life. I somewhat envy that. I'm curious to know if packer was a positive person throughout his life. Unfortunately my husband has always been lacking a positive outlook little makes him happy except our 15 yo daughter . His losses are far greater because he can't see any light.No self pity here. I'm very use to it after 21 yrs but it does make my journey more difficult but manageable. I wish you both the best and enjoy maine
Diane

Dee,
God Bless you both. Please give Packer a hug and kiss from Maryland. You are an inspiration.
Hold each other tight and be proud,
Mandi

Hi, Dee- When did Packer have the flap? It must have been successful if he is walking on the leg, and bone still in Jaw? I had one and it failed it took ten days which is rare usually fails right away. I assume he has had his for awhile. That is so great that it worked. Do not worry about the limp it will go away, leg fills out and if you walk and exercise, the dog walks and a little gardening will do it and it will get as good as new. This summer I even wear sandals with heels and it works. You explain to him how good that makes my leg!