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Taking care of a spouse/partner

lily33
Posts: 27
Joined: Jun 2009

I've been caring for my spouse for over 5 years as he battles kidney cancer. We are both in our early/mid 30's and been married 11 years. Are there any other spouses around our age dealing with cancer and marriage issues? It seems that although all marriages go through difficult times because of cancer...younger couple sometimes have somewhat different concerns. Anyone out there?

trish07's picture
trish07
Posts: 141
Joined: Jul 2009

Although I think there may be differences for more elderly couples that have been together for years and years,I feel many couples regardless of age can relate with you. We have been together for 7 years,battling cancer for the last 2. There are times I feel like I can't breath...my life has been plucked from me and I'm not even ill. I stay up late at night and get up early for a small amount of peace...I'm exausted from lack of rest. I always read what you post and relate to your out-pouring of emotions. I don't even feel like a woman anymore..I feel like a hired maid,cook,financer,counsler,servant,etc.etc.etc.! My husband tells me how Lucky I am not to be ill{o.k., I know I don't have cancer}but I certainly do not feel Lucky. I have no true Joy in my life...just going thru the motions to get thru another day that was just like the day before and the one before that. I love my husband...I just wish he would show me a small amount of empathy for all I do and try to understand that my life has been turned upside down also because of this horrible disease.

gthufford
Posts: 34
Joined: May 2009

My wife is just entering her last 4 week cycle of chemotherapy, and we agreed on Sunday that we will be separating once she is feeling better and able to cope without me. We have been told that may take up to a year, and I will not abandon her while she is sick, but we both a agree a separation is necessary, and that our marriage is effectively over.

The cancer last year was a horrible experience, but the chemotherapy has been worse for both of us. The prognosis is very good for her health, but the prognosis for our marriage is dire.

I've read a lot of posts of people who got divorced after chemo therapy, and most say that the cancer / treatment just highlighted marital problems that had always existed. For us, cancer / chemotherapy has destroyed what was a beautiful marriage of nearly 13 years. I mourn what we have lost.

I relate to your comment, "I feel like a hired maid, cook, financer, counsler, servant, etc. etc. etc.", but I can honestly tell you that I would happily do all of it for another year of chemo if my wife would only trust and appreciate me. Instead, she just tells me that I can never understand, that she does not trust me with her feelings because I don't understand, and she even went as far as to tell me that she would pick another man from her therapy group to comfort her physically if she gets sick again instead of me. Ouch.

She has surrounded herself with a group of cancer survivors who tell her that it is OK to stay negative about life and to only trust members of the "cancer club." Her main support mentor is 1 month away from his 5 year mark, and he has more unresolved cancer issues than my wife. He still goes to the hospital once every other month or so to get a blood test because he is so sure that the cancer is back. By the way - he divorced his second wife shortly after his chemo was over - a road map for our divorce. This is who she seeks counsel from. This was with the blessing of her therapist, who knows how hard this has been on our marriage.

By the way - I have made some huge mistakes during this period, but who wouldn't? I take my share of the blame, but I am human and can only bend so much. For nearly a year, I have been the only breadwinner, and for the last 6 months I have been the primary caregiver to our children. I have done everything that my wife has allowed me to do - which is everything that needed to be done around the house and for the kids, but nothing that would help her cancer recovery - she won't let me go there.

My post may be wandering from the topic, but we are a 39 year old couple going through a tough time.

Cancer is evil.

lily33
Posts: 27
Joined: Jun 2009

trish07 and gthufford,

My husband and I have been married for over 11 years. Our relationship since the day we met has been loving and wonderful. Ever since my husband was diagnosed with cancer over 5 years ago our marriage has slowly started to deteriorate. We love each other dearly, but the strain of his constant struggle and my stress over holding our lives together has taken its toll. We find it difficult to find comfort in each other as both of us have changed so dramatically due to the trauma that cancer has constantly placed in our lives. I understand what each of you is going through. I feel I've been cheated out of my happy marriage and my future with my husband.

lily33

zahalene's picture
zahalene
Posts: 624
Joined: Nov 2005

My marriage also bit the dust after cancer (mine).
It has been over 23 years since I was first diagnosed and over 13 years since my (now ex) hubby left me. So I am looking at this from a much longer perspective than any of you guys have yet had a chance to develop.
The one thing I wanted to say is that I believe it is a huge mistake to make any permanent or irrevocable decisions while in the midst of, or even for awhile after, the cancer experience. Cancer changes everyone it touches, the survivor as well at the caregiver. But, those changes are not always, by any means, for the worse, AFTER THEY HAVE BEEN PROCESSED AND ASSIMILATED. And then, also, you have the effects of stress, medications, etc. on the mind, body, and spirit, which are making it virtually impossible for anyone to think, feel, and evaluate 'normally' during the crisis time.
I truly believe I am a kinder, gentler, more compassionate person than I was before cancer. Too bad my ex did not want to stick around and get to know the person I am today. I think he would have been pleased.

gthufford
Posts: 34
Joined: May 2009

Zahalene (I love that user name!),

Thank you so much. I am going to copy your post and share it with my wife. When we decided to separate (we now have a target date of Nov 1 for the separation), we agreed that we would give it 6 months and then re-assess. My hope is for a reconciliation at that time, but there is no stopping the separation at this time.

Thank you for your insight!

zahalene's picture
zahalene
Posts: 624
Joined: Nov 2005

close your mind to any possibilities. Three months is long enough for almost anything to happen. And it always does in the cancer world. Sometimes it's good, sometimes not. But things WILL change.

RE's picture
RE
Posts: 4606
Joined: Feb 2004

I think you are right Zah, had he stuck it out he would have like the post cancer you. Now, when I read your post it made me recall how during treatment I noticed that I was far more sensitive (emotional) and I was meaner as well. I talked to my oncologist about this and it was explained to me that a side effect of the drugs was a tendency to be more agressive or ornery and of course sadder (who wouldn't be). Once I understood this it allowed me to try harder to be kinder and it also gave my husband a bit of insight into why my character was somewhat altered. It was not my fault, it was a reaction to the drugs. We both worked at derailing the situation with humor when I would be a bit ornery; it worked like a charm. Just sharing a memory that came back while reading your post, now I don't mean to say that you were ornery I am saying that I was ornery, I don't think you could be too ornery. Hugs to you Zah!!!

RE

zahalene's picture
zahalene
Posts: 624
Joined: Nov 2005

Oh I was ornery all right. But my (now ex) hubby and I did not have the kind of relationship that allowed us to deal with it as constructively as you and yours did, so I just stuffed it and went into a sort of perpetual withdrawal. Rather than lash out as I wanted to do, I would become non-responsive. Which really frustrates somebody who is looking to pick a fight anyway (him)! LOL
Of course this did even more damage to an already emotionally arid relationship. But for various reasons (all unbelievably stupid, in hindsight) we did not get the help and support which would have given both of us a better understanding of what was going on and how to handle it. I doubt that the final outcome would have been any different, but it might have made things easier on both of us at the time.
So, I'm just saying to others out there who may be having relationship issues on top of cancer issues...you are a physical, mental, and emotional, and spiritual person all rolled into one, so guard against letting cancer (or any other crisis in life) create 'tunnel vision' to the point that you ignore any part of your overall health.
God bless.

soccerfreaks's picture
soccerfreaks
Posts: 2801
Joined: Sep 2006

Trish, let me go on record, once again, as saying that I believe you have a much harder job than your survivor husband has.

Given the choice of dealing with cancer as a survivor or caregiver, I would say 'Give it to me' every single time. I would not wish it on my loved ones.

I feel for you.

Your husband needs to understand that he is being extremely selfish. I don't know the details of his battle, or yours, but it needs to be made clear to him that for every hardship he has faced, you have faced not only that one, but also the caring for him.

He needs to know, as I do, that without my wife, my significant caregiver, I would be dead.

I would be dead.

I salute you, trish, and wish you the best, including a realization by hub that you are at least half of this team.

Hang in there. He is apt to come around. He is.

Take care,

Joe

newbride
Posts: 142
Joined: Jul 2009

Trish I know how you feel -- that's exactly how I feel sometimes. Sometimes I think the cancer patient does not know how much we are suffering as well and how much our lives have also changed. We've been together 3 years, married for 3 months and we use to get away on weekends, go to shows, go out to dinner, etc that all stopped in March after 1st surgery the only little break we got was our wedding and honeymoon and the cancer came back like a riptide!

pattynonews's picture
pattynonews
Posts: 176
Joined: Aug 2009

I feel like that some days, I have been sitting here for 10 hours just taking care of Jack today, and he is having one of those days where he just sleeps, Im so lonely, I even feed him when he is sleeping so he gets what he needs, but I need some attention I need to thought of as not just his caretaker anymore and some days that is how I feel, just his caretaker, I was told once, that Jack has the easy part in this bad situation he has the cancer , we the caretaker/wife have to continue doing it all and living life beyond his cancer, how do you do that, It has been a year with cancer, I hope im strong enough to keep going forward

soccerfreaks's picture
soccerfreaks
Posts: 2801
Joined: Sep 2006

Cancer is not genetically predisposed to ruin marriages or other relationships. Call it evil if it makes you feel better, blame it for your travails, cite it for psychic dysfunction, do what you will, say what you will, mesmerize yourself with the notion that it is not your fault, that cancer is to blame for everything, and the truth, the single, the utter, truth will remain: cancer is not evil.

Cancer does not ruin marriages or relationships. It does not.

It is certainly an enabler and a convenient scapegoat. I understand that it brings hardships, great hardships, along with fear and anxiety and even inconvenience.

But I am not buying.

Lily intimates that perhaps young folks have different issues with respect to this cancer jag. I would argue that she is correct in at least one way: younger folks tend to be more self-centered, more self-absorbed, more for-the-minute types, especially these days. You know: "what have you done for me lately?"

That would be a gross misjustice to the majority of young folks dealing with cancer as either survivors or caregivers, of course (and even those who are not, on more careful consideration). Most are enduring, most are coping, most are adapting. If anything, young folks tend to adapt better than us old Baby Boomers. For the most part.

I stereotyped, purposefully, to illuminate lily's own stereotype, that somehow older folks do not experience or understand the issues that the 'younger' folks face.

That is complete nonsense.

As it turns out, many people who have lived together for a great many years actually continue to love each other. I know! Who woulda thunk it?

And since they are not so young and vibrant and strong and energetic any more, when they provide care for a loved one it is probably even more taxing than what some of you are experiencing and lamenting about.

Being old, incidentally, does not mean they do not have desires, does not mean they do not crave physical AND emotional affection. Those things do not disappear when you reach a certain age, as far as I can tell. These people simply know well enough to subsume those needs for the immediate needs of their loved one.

If your love, the love of your life until cancer destroyed it or brought its evil ways into your lives and all of that garbage, isn't worthy of that, that subsuming of your own needs, then I would argue that it never was.

Cancer simply speeds things along and that it only does for the less resolute of us or for that which was going to happen anyway.

Don't blame it. Don't use it as an excuse.

It is what it is.

You are what you are.

Take care,

Joe

lily33
Posts: 27
Joined: Jun 2009

Joe,

After reading your response I will admit I'm angry. Actually very angry. I appreciate your point of view simply because I believe that everyone has a right to their opinion. However I do not believe you have a right to judge any marriage that you have no intimate knowledge of what-so-ever. Your journey may have filled you with the belief that you can judge others as you see fit...I do not.

Don't you DARE act as if you know ANYTHING about my marriage or those of any other cancer survivor/caregiver. My experience IS different because I had to deal with my husbands cancer at age 28. Did you have to figure out how to raise a 2 and 4 year old, and go through 9 months of pregnancy on your own while sitting by your spouses side in intensive care for 3 months? NO YOU DID NOT. You do not understand that experience. I will be a widow before the age of 35 Joe and raise 3 kids on my own...sorry to tell you but that IS a different experience then someone dealing with cancer at age 60. My experience is no better or worse than yours, but it IS different.

Also Joe, you have some nerve insinuating that gthufford or my marriage is suffering because we are shallow and self-centered. Do not dare to insinuate that our marriages were always doomed because cancer is destroying them. You have no idea what I or any other caregiver has given up for the love and care of their spouse. Congratulations Joe that your marriage has survived. How about some compassion for those of us struggling instead of judging. I was under the impression that this site was to HELP others cope with their pain...not make them feel like inadequate spouses or caregivers. And by the way Joe...cancer is evil.

lily33

soccerfreaks's picture
soccerfreaks
Posts: 2801
Joined: Sep 2006

As a wonderful and intelligent lady wrote on this very site, when a respondent apologized for disagreeing with her original post (and I paraphrase), "If I just wanted to hear from people that agreed with me, I wouldn't post in here."

As an equally wonderful and observant lady responded to me today regarding posts on these boards (and, again, I paraphrase), "Sometimes people do not post to get opinions but to get permission to do what they are going to do anyway."

I cannot, I will not, apologize for expressing my opinion, unless, after re-reading, I consider that I was grossly unfair or even myopic. I will not apologize here. I will say that if I 'rubbed salt in wounds' that was certainly not my intent, is rarely, if ever, my intent.

I responded to what I consider a stereotype about the old relative to the young and the relative effects of cancer on the lives of each. I responded with the comment that the young are more self-absorbed, more self-centered.

I IMMEDIATELY followed that with the most important proviso that I was providing a FURTHER STEREOTYPE and that most young people are not self-absorbed nor self-centered. Perhaps this was missed in the translation. Perhaps someone was reading what one wanted to read or needed to read. Perhaps it hit a nerve?

As for judging without merit, without knowing what you have gone through, while it is almost certainly a waste of breath, I beg to differ. On the one hand, my judgement, if you want to call it that, and I assure you I was not judging anyone, my assessment was based on what has been provided. It can be no other way unless I know you personally and I do not, of course.

So, I am speaking from the facts as presented, not just in the post/responses here, but on these boards. I know of no other way to respond.

On the other hand, to presume that I know nothing of your trials and tribulations, that I know nothing of what a caregiver goes through on behalf of their loved one is extremely prejudicial in its own right.

I must assume that I know more of what you have gone through than you could possibly know of what I have gone through. I care enough to read, you see, and to try to help, whether I am successful or not.

I was 10 years younger than you when we lost our second child, full term, at birth. I was less than four years older than you when I laid on the floor next to my mom's gurney as she passed her final breaths. I was not much more than 10 years older than you when they split the bottom half of my face in half to replace half of my tongue while dissecting my neck as well. I was but two years older than that when they took out a lobe from my lung, and when they kept me in the hospital for nearly an entire month for an infection that they thought would kill me rather than cancer. I watched my wife through all of this, I saw her suffering, her anxiety, her grief. I think it is fairly common knowledge that I consider the caregiver's job more difficult than the survivor's. I think you know that firsthand if you read responses to your own posts.

And just for the record, Evil: 1 a: morally reprehensible : sinful, wicked [an evil impulse] b: arising from actual or imputed bad character or conduct [a person of evil reputation].

Since these are typical usages for the word EVIL, I assumed that we all used them. By these standards, I would argue that cancer is not, cannot, be evil. It is not sentient. It does not have morals. It is a biological existence, a biological event. People are capable of evil. Cancer is not.

I say again: It is what it is.

You are what you are.

We are what we are.

Take care,

Joe

lily33
Posts: 27
Joined: Jun 2009

Joe,

My original post simply asked if there were any young caregivers out there whose marriages/relationships were stressed. I believe that young caregivers do have some different issues-I never said they were more important than an older caregivers issues. For some reason you assumed my comment disregarded the struggles and emotional impact cancer has on older couples. I never said such things yet you obviously were offended for some reason. Everyone experiences stress and trauma in different ways. Just because cancer deteriorates or destroys some couples relationships doesn't mean their marriages were not strong and committed from the beginning.

People were brave enough to share their struggles in the hopes of finding comfort and support. You are entitled to your opinion. However, do you have to share it with such sarcasm and judgment? It just saddens me that your opinion was delivered in a harsh manner without any concern for the feelings of others.

lily33

gthufford
Posts: 34
Joined: May 2009

Well said Lilly - thank you - ttys.

gthufford
Posts: 34
Joined: May 2009

Joe,

You are free to your opinion. However, one of the differences between my post (an others) and yours is that you are judging us and our situations with very little information. You may feel entitled to do this for some reason, but it really is not a fair or compassionate thing to do. Shame on you.

This forum is great because it allows for a diversity of view points, all of which are valuable. However, I question your motives, and you need to know that your post does nothing but rub salt in the wounds of those of us going through tough times. If your intention was to cause more pain to an already difficult situation, you have done so.

Luckily, there are a number of other positive people who have actually offered constructive advice. Thanks to all of them - they make it worth posting difficult and personal issues on this website.

By the way - cancer is evil.

RE's picture
RE
Posts: 4606
Joined: Feb 2004

Lily I have read several of your posts and have not answered them because I was unsure how to do so. I am a three time cancer survivor, I was one of the caregivers to my sister and to my dear mother. I was home as a child while I watched the cancer drama unfold with with my parents. I watched in horror and dismay as my parents handled the first battle poorly, my dad was less than gallant. You see he could not fix it so it made him angry (he is a grab it by the horns kind of a man), happily he came around when it returned for a second, third, fourth and final assault. Then I come here and read your posts, I understand you have some real issues, that said it is important that you too understand that when you post something you are reaching all sort of cancer experiences and people. Some will rally around you while others may take offense or be confused by what you state. I myself was somewhere between offense and confusion along with sadness and hope for your husband and children. I am one of those who has a husband who rallied for me, never once became angry or wished I was just not there. I realize you did not say that, but your tone leans to that and can be interpreted in that way. I have seen both sides of cancer relationships and I can tell you from personal experience that when it seems as if your marriage is done with time it can survive. I do not think it is anyone’s intention to bash you or those in similar situations, it is just as a cancer survivor I cannot imagine how I would have felt had my husband expressed himself in like terms. We survive and some thrive because putting the medical aside we have reasons to, we are loved, desired and cherished. I myself felt as if my husband had been short change as I certainly am not the woman he married. I have one mauled breast, and one missing breast along with many surgical scars and lifetime after effects of cancer treatment, my husband assured me in no uncertain was I less in his eyes. I too was a stage 4 cancer, that was 12 years ago and although I have had to battle it again I am still here, we are still here and that is triumph over adversity. It would been easy for my man to move on, he makes much more money than I do and there are gals out there who would have moved right in. I am rambling because there is so much your post has awakened in me. The what if’s…..what if he did not want me because I am not the woman he married….it is a harsh statement that you most certainly have every right to make but please understand when you do there are those like myself who feel like we have been assaulted in a sense. To me it said you see cancer people as less valuable, you may not have meant that but that is what I heard. From your words it sounds as if your husband is stable as he is working and you say the medication has little side effects so it would seem to me he could live much longer than you are predicting, as I said I was a stage 4 twelve long years ago. I will stop now as my thoughts are swirling, just wanted to post another view and to say that we may not be who our spouses married, but we are of great value and we are worth the effort. I truly wish your husband, your children and you a good resolution to the current turmoil you describe especially for the children as I was once in their shoes and it is vivid in my mind what it was like to see the sadness in my parent’s lives as they struggled to learn how to have a future with cancer.

RE

MichelleP's picture
MichelleP
Posts: 254
Joined: May 2009

Thank you RE, I've read the prior posts many times over and wanted to respond as well, but couldn't find the words. You said "exactly" what was needed. Thank you so much! And I hope the others will calm down and realize that you're correct!

PS Joe....You're right too!

Thanks again!

esined
Posts: 22
Joined: Jul 2009

I just want to thank you for your words. I(caregiver) got online line after an argument with my husband(survivor) with feelings of anger and frustration for the changes cancer has brought to our lives. Most of the time I find the postings support my thoughts and feelings and help me to know I am not losing my mind because others feel the same way. But in this instance I find that I was blaming him for what he cannot change,(he would if he could) and that he is giving me what he can. With no judgement on the discussion, it has reminded me he is worth the effort.

esined

zahalene's picture
zahalene
Posts: 624
Joined: Nov 2005

'Blessed are the peacemakers...'

sue Siwek
Posts: 281
Joined: Jun 2009

lily, i am old,, 64. i have been married 42 years. when my husband and i started on this journey i too had trouble dealing with his cancer. everyday something new came, chemo not working, blood clots in the lung. he had just started a business with our sons and could no longer guided them. so i watched my oldest child at the age of 31 lead. this was not new to him but here he was his father with cancer, a new family and a new business to run. it was stressful for all of us even though my 4 sons were ages 31 to 21 they were afraid to lose the father they loved all those years. i know you are afraid but so are your children and your husband. i know with young children you must be thinking how will i care for them if he dies. often young couples both have careers and live on both incomes, that can be a problem. i am just wondering if you feel that your children will be better off without their father? i will not judge you just suggest that you get some help. ask the doctors to suggest a therapist that you can talk to. this was very helpful to both my husband and me. also, a mild anti depressant can help. often people think they just have to be strong...well this is overwhelming and you both need to ask for help it is out there for the asking.

sue Siwek
Posts: 281
Joined: Jun 2009

lily, i am old,, 64. i have been married 42 years. when my husband and i started on this journey i too had trouble dealing with his cancer. everyday something new came, chemo not working, blood clots in the lung. he had just started a business with our sons and could no longer guided them. so i watched my oldest child at the age of 31 lead. this was not new to him but here he was his father with cancer, a new family and a new business to run. it was stressful for all of us even though my 4 sons were ages 31 to 21 they were afraid to lose the father they loved all those years. i know you are afraid but so are your children and your husband. i know with young children you must be thinking how will i care for them if he dies. often young couples both have careers and live on both incomes, that can be a problem. i am just wondering if you feel that your children will be better off without their father? i will not judge you just suggest that you get some help. ask the doctors to suggest a therapist that you can talk to. this was very helpful to both my husband and me. also, a mild anti depressant can help. often people think they just have to be strong...well this is overwhelming and you both need to ask for help it is out there for the asking.

luvher03
Posts: 8
Joined: Jul 2009

I have read all the posts and felt a myriad of emotions...but i want to comment on the original post alone. My partenr was diagnosed in June and since then NOTHING has been the same.....all of a sudden the split responsibilites we had became all mine...my life ceased to exist w/out cancer...everywhere I turned it was there affecting something else...I hated it and hate it still...i do believe we will get through this but it doesn't make it any easier...her loss is my loss and her grief is my grief. She will be getting a bilateral in a few months, her hair will fall out in a few weeks, and she has been sick A LOT so I feel alone in this marriage we have. My needs are no longer being met by her and her needs are increasing... It is a difficult thing for me to reconclie, however I have leaned heavily on friends for support, to vent, to glean strength from. Of course this isn't what I wanted, it isn't what she wanted either. I will admit I have been an ass on more than one occasion due to frustration. It is hard to live in the fear of the unknowing....will our kids be motherless, will I be wifeless...but if so, how can I make today count. EASIER said than done. What I am trying to ineffectively say is that I struggle daily with this invasion not only in her body, but in our life. I am tired more, I feel more negative than I used to, financially strapped, stressed, lonelier, and I blame cancer. I am 32 yrs old. I believe if we were together 1 yr or 40 yrs, i would be prone to feeling the same as I do today. I feel like life was great, we were coasting along happily then BAM! We will be celebrating our 6 yr anniversary 2 days after round 2 chemo....which means nasuea and vomiting and fatigue...how romantic....(note the sarcasm) I vaccilate between sarcasm and true sadness. I don't know if i am helping or not, but i wanted to share my experience without demeaning anyone elses. It is hard and it sucks and it's not fair. I am trying to stay positive and do okay sometimes...but it is hard, it sucks, and it's not fair....

SonSon's picture
SonSon
Posts: 186
Joined: Jul 2009

I take care of my mother-in-law and I feel a lot of the same things you have expressed. My care for her (her son - my husband - travels most of the time and is nearly useless when he IS here) consumes just about every free second of my day. And there are nights I can't sleep because of crisis that happen. I love her to bits - she is a lovely woman with some really witty things to say from time to time. But, dammit, this cancer has invaded my whole life. I can NEVER go out to eat with my husband, I am NEVER alone with him, when he is here it is clear that his entire focus is on her...and on top of all this I am the one to watch her slowly die. I don't think it will be the cancer - I think she will just slowly starve to death.
I really can appreciate the resentment you have about the cancer and the life it is sucking out of your marriage, love life and daily life.
I hope that you and your wife work hard against the cancer and succeed. And, hopefully, your marriage will be stronger and richer for it.

MichelleP's picture
MichelleP
Posts: 254
Joined: May 2009

I'm so glad I came back to this thread and read the additional comments...I really am! I posted another thread because I was feeling frustrated with my husband. But when I read some others here who are complaining about themselves only and forgetting about the terrible disease their partners are fighting it just made me feel ill. I started to actually question myself because of a few cranky moments that I've had from my husband. BUT....there is no way in He** that I would "ever complain about my own needs" while he is fighting this. It upsets me beyond words to read such things here. What they heck are you people thinking about? Yourselves and yourselves only, that what. Would you change places with your partner? I doubt it! Maybe as someone here said "nasuea and vomiting and fatigue...how romantic.." How selfish can you be?

The thing is....with maturity comes love...real love. Not the kind that complains because they aren't getting what they want. Real love is when you care for someone no matter WHAT. And that means 24/7 care if needed. Sitting by their bedside and reading to them or just making them laugh. It's laying next to them and holding them at night for comfort. Making sure they are eating right and taking their medications. Taking them to doctors appts and learning anything and everything you can about their disease and how you can help even MORE.

I have been house bound with my husband since February and ya know what? Even if I did have someone to come in and help me, which I kinda wanted before reading this thread, I'd rather be next to him than anywhere in the world.

All I can say is shame on selfish people....shame.

luvher03
Posts: 8
Joined: Jul 2009

All I can say is shame on people who judge what I am FEELING. I may not deal with it like you, so perfectly and full of joy to be around my ill spouse all the time. Shame on people who do not read my words….but instead pick out phrases. Yes, I said "nausea and vomiting and fatigue...how romantic…but RIGHT after that, I stated “note the sarcasm” and also said, right after that, that I vacillate between sarcasm and true sadness. You have no right Michelle P to call me selfish for sharing my feelings…especially when I am admitting my shortcomings in this new arena of caregiver. I am having a hard time with this new lifestyle of working full time, juggling 3 kids and their activities, traveling 4 hrs round trip for a one hr appointment which causes a juggled work schedule and kid sitters…chaos. So yes…I come here to vent so I can get it off my chest here and NOT TAKE IT OUT ON HER! How is THAT selfish? It is a normal reaction, the one I am having. It is not the norm so I balk a little and am trying to find my way through this so I can be the best support she has, so I can continue to be her rock. Your words were NOT encouraging. Perhaps you could have shared what helps you keep things in perspective so that you always have plenty to give. I could use some advice and support. Not judgment for not being you. My last words in that post were: “But I wanted to share my experience without demeaning anyone else’s. It is hard and it sucks and it's not fair. I am trying to stay positive and do okay sometimes...but it is hard, it sucks, and it's not fair....” This is hard, it does suck and it is not fair. If anyone thinks it is easy, it doesn’t suck even at times, or that it is completely fair, then share your secret with me please. My wife will even say this…she thinks it is hard. She thinks it sucks. She thinks it isn’t fair. This is her 2nd cancer. Her 1st one was Non Hodgkins Lymphoma she had 14 yrs ago while pregnant with her firstborn. Now she has breast cancer. Now I am a caregiver. Now we learn how to get through this one together. But that doesn’t mean I have to like it Michelle. And to SonSon; thank you so much for your words…it is nice to have someone understand and I too hope that your marriage will get through this as well. Your words meant a lot to me and I am sorry for what you are going through.

trish07's picture
trish07
Posts: 141
Joined: Jul 2009

There are no selfish caregivers here. I think before you rush to judgement you should first recall that Lily [the one that posted this topic] has been a support to you when you needed a shoulder [should I push or just support?] We are all caring no matter what. We make sure they are eating right and taking their meds. Driving [some of us several hrs.] to Dr. appts. Learning anything and everything we can about their disease. And we are all doing it 24/7. Another thing we do 24/7[including you] is being the strong one, the rock that everyone connected to our loved one goes to for reassurance. And we cannot buckle,ever, because we are not only the caregiver for our loved one but them also. This is where we go for support, this is where we find "OUR" caregivers.

sue Siwek
Posts: 281
Joined: Jun 2009

i think we all go through a myriad of feelings. as i have stated before i am married for 42 years. somedays i am tired, angry and yes feel put upon. i do believe a cancer diagnosis for a spouse pretty much means the other may as well have it to. a caregiver can and should have bad days we are human. i have to keep reminding myself that i am the healthy one and i wouldn't trade that for anything. yes it is often lonely and no one else can understand what we are going through. invite friends in, see family and try to find some joy in life. leaving may not be the answer because you may be saddled with guilt and maybe not. i guess it won't be easy either way.

SonSon's picture
SonSon
Posts: 186
Joined: Jul 2009

luvher03 - I don't think I was being judgemental in my comment - for sure that is not what I intended. I was trying to empathize with you in that I feel some of the same feelings.
There is nothing selfish about missing "normal" days, wanting to be able to interact with your loved one in the same way as before the cancer or resenting how it's changed your life.
I for one am not one to judge as I have been guilty of being quite cross and ugly at times in my own frustration with the cancer and what it is doing to my mother-in-law.
So, if I came across poorly to you please accept my apology.
Fatima

cathlinberreth01
Posts: 38
Joined: Jul 2009

Hi Michelle

I may be out of place to comment on your post. Also I am not a caregiver but a cancer victim so I am NOT speaking out of experience, but what I hope is common sense and my observations of my partner.

Of course I think a caregiver needs to step up when their partner gets cancer. However, I don't think 24/7 care is realistic for ANY caregiver. I think a caregiver can only care for someone if they are managing to get some basic needs met outside the caregiver-cancer victim relationship. I try to schedule time with other friends to get support elsewhere. I know my partner CAN'T be there for me all the time. I have had other friends come check up on me and bring me food. I encourage her to get some help from her friends. Because I can't be all the support for her because I am so sick.

We are all human and all have needs. Caregivers sacrifice a LOT, but if you are giving more than you have, you CAN get resentful and tired and frustrated. I don't want my partner to resent me, so I encourage her to spend time with others for her to get support. I CAN'T know what it is like for her to see me ill and have to do everything around the house now. It must be EXHAUSTING. She tried to share her frustrations with me ONCE before and I just felt bad because I couldn't do anything to help the situation because I am powerless with this stupid cancer. I felt guilty, but she wasn't wanting me to feel guilty, but to just have me hear her frustrations. We talked about it, and we figured out that she needs to vent with friends who can hear her and empathize. I am unable to do that for her all the time because I am too close to the situation.

You can't put all your eggs in one basket. You can't be the ALL in ALL for someone. You need support from others to feed you to keep going.

I pray that you CAN complain about your own needs here or in another forum or with friends. Your needs are valid, just as much as your husband's.

I think it is odd that you were feeling frustrated about your husband but instead of talking about that, you went off on the earlier posts being "selfish". I read them and didn't feel like they were out of line or being selfish (except Joe's confused me). I thought that they were human. I thought they were real.

I wonder what it going on for you that you got so reactive over the other posts? I hope you figure it out.

Good luck to you and your husband. It doesn't sound like things may be going well.

MichelleP's picture
MichelleP
Posts: 254
Joined: May 2009

I'm sorry that 24/7 caregivers might not be realistic to you. I may have moments yes, but they are very far and few between. Perhaps I'm from what they call the "old school" when commitment actually meant exactly that. I admit that I have had moments of frustration yes, but I would never ever put myself and my "needs" above my husbands. I have never ever as you said been "resentful". And no, you're correct in saying that I can't be the ALL in ALL for someone. But I will do my best and won't blame my partner for that.

Yes, there were indeed earlier posts who were selfish...that's my opinion and I will stick to it. You are also entitled you yours and I respect that. There is nothing for me to figure out....already done that.

And as far as Joe, I've never met anyone who is more "in tune" to this disease and how it affects the caregivers. Joe has been a blessing to me and so many others here. I am beyond grateful to have met him and honored to have been blessed with his advice.

MichelleP's picture
MichelleP
Posts: 254
Joined: May 2009

I'm sorry that 24/7 caregivers might not be realistic to you. I may have moments yes, but they are very far and few between. Perhaps I'm from what they call the "old school" when commitment actually meant exactly that. I admit that I have had moments of frustration yes, but I would never ever put myself and my "needs" above my husbands. I have never ever as you said been "resentful". And no, you're correct in saying that I can't be the ALL in ALL for someone. But I will do my best and won't blame my partner for that.

Yes, there were indeed earlier posts who were selfish...that's my opinion and I will stick to it. You are also entitled you yours and I respect that. There is nothing for me to figure out....already done that.

And as far as Joe, I've never met anyone who is more "in tune" to this disease and how it affects the caregivers. Joe has been a blessing to me and so many others here. I am beyond grateful to have met him and honored to have been blessed with his advice.

RE's picture
RE
Posts: 4606
Joined: Feb 2004

Luvher03 if your wife has not yet checked out the breast cancer boards on this site please encourage her to do so, you can post for her if she does not wish too. There are a few men who post with their wives with questions and concerns and they seem to draw strength from the support they get there. The breast cancer board has many people going through what your wife is and they can relate.

Also there is a website www.heavenlyhats.com where you can complete a small request form and they will forward a hat package free of charge to your wife. I received one while I was having chemo and it was so nice to get and made my day when it arrived. In addition to that the American Cancer Society often has hats and wigs at their facilities that they will give to your wife at no charge. Once you know what treatment your wife will receive you can call the American Cancer Society and they will forward a brochure with information regarding her treatment, I found this to be very helpful.

I am here to tell you that once treatment is behind you and your wife things will get better just give it a bit of time. As a cancer patient I am much more aware of my body and probably wave the red flag more than the normal person and your wife will probably too but that is what keeps us alive. I truly wish you and your wife the best!

RE

MichelleP's picture
MichelleP
Posts: 254
Joined: May 2009

I'm glad that you clarified yourself. Good luck to you and your wife

seanslove's picture
seanslove
Posts: 71
Joined: Jul 2009

luvher03,

I have not posed here much in the last week as I fear all I have to offer is negativity,which will halp no one. However,I am on here daily and read the forums. I guess I am searching for the next answer to a never ending amount of questions. Through others experiences I do find some solis. I understand the concept of coasting along,as we had just celebrated our six wedding anniversery when my husband became ill and now have been together for seven years. It's not fair as I have watched a once strong man at the age of 45 become a man who looks pyschially to be near 80.
I also understand the mental,emotional,and finical end of the whole process. You stay home to care and begin one by one lossing everything. All you have left in the end is the hope for being together when it's all over:and even that is unknown. I feel for those who this horriable life altering event has destoryed all they held sacred. No one can ever know what anothers battle with this is doing to them,as everyone is different,and everyone copes in a different fashion.
What I can say,is this forum,has given me so much support and made me feel as if I am still human and he is still human. Otherwise,I believe,I would feel as if we were a bad joke in a sci-fi movie. Your right,It sucks and it is not fair. I have watched so much pain and suffering in front of my own eyes in the last few months that I do not know where to begin.
Staying positive is only a momental state of mind for when you look into the eyes of the one you love,because outside of there,the ability to do so starts to go away. I have learned not to talk to any of my friends about this any more,as they really don't understand and turn away now. I have also learned to sta to myself,as by doing so I stay more upbeat for him. And in the end that's all that matters. My feelings and emotions play no part in this fight,as this is a fight for his life and must be fought on his terms. THerefore,I take no offence at his bad moods,at his hatefull remarks,or his on going growing need for care. It is a natural part of life that we can never be prepared for and thus must move forward with in hopes of regaining what has been taken away.

MichelleP's picture
MichelleP
Posts: 254
Joined: May 2009

Seanslove....You are such an inspiration to all caregivers. Sometimes when I feel down myself, reading your posts and the love you share with your husband gives me strength. As you said, it's a natural part of life that we can never be prepared for and thus must move forward with in hopes of regaining what has been taken away. And will all the wonderful support on this board....we'll make it!

luvher03
Posts: 8
Joined: Jul 2009

It's not like I don't love her. She is the reason I am who I am to this day. I kow that there a few who think I am selfish for "feeling" frustrated...(or being human) but that does not mean that my love for her has waned. Her touch, her smile, her smell, her voice, her being are all things that stop my heart and ache for more. Her laughter fills the room and the love she has for our children are beyond compare. I could go on and on about the feelings and commitment and desire I have for her, but this specific site is for caregivers....and my undertanding is that I can share the loss and unfairness of the dream shifting here. My feelings do get hurt when I am labeled selfish, when the love I have for her is why I come here in the first place. Thanks to all of you who have shared your experience strength and hope with me. You are all a Godsend and I appreciate your words more than you will ever know....

trish07's picture
trish07
Posts: 141
Joined: Jul 2009

You are right, this sight is for caregivers,a place where we can feel safe to share our individual experiences. A place where we can pour our emotions without reservation for fear of being ridiculed or attacked. I must say that I welcome constructive views from others, there certainly are times that other perspectives are comforting. But, I never expected to feel like I had been slapped in the face and kicked in the stomach. Please continue to come here, as I will... for most will rally around with love and understanding. Bless you and your family...

09wazzu09
Posts: 3
Joined: Aug 2009

My wife was recently diagnosed with CRC in the past month. We are 34 years old with a 4 year old and a 10 month old. We've been married for 7 years. This has been the most difficult time for the both of us. My wife going through all the testing and surgery, me, wondering about the future. Last night, the light bulb went off and realized the most important thing is that we communicate with each. From her pain to being a single Dad. I'm new to this, and await for the upcoming journey. Stay strong and positive.

Doris_Holman
Posts: 9
Joined: Jul 2009

We have only known about my husbands cancer for a little over a month. He has testicular cancer. They removed his right testical to get rid of the cancer but it had already spread to his lymphnodes in his abdomen. He is now going through chemo for it. I couldnt imagine what it would be like to do this for 5 years. The doctor seems to think that after the chemo the cancer should all be gone. I hope that is true. He is 30 and I am 29. We have 3 kids together. We just had our third one 3 weeks before we found out about the cancer. My mother in law is scared that I am going to leave him. I have no plans on it. That is the last thing I want to do. She says that cancer causes alot of couples to split. I know it is hard. My husband was the sole provider for our family. Has a great job with the electric company. He is now on short term disability. He only gets half of his pay. I need to find a job but how can I with 3 children and a sick husband? I cant. If you need someone to talk to write me back. I am a good listener and I can try to help you in any way I can.
Take care
Doris

lily33
Posts: 27
Joined: Jun 2009

Doris,

I am 33 and my husband (35)has been battling kidney cancer (now stage 4) for over 5 years. We have a 3, 5, and 7 year old. I understand your fears all too well. I constantly wonder what I will do when my husband is unable to work (he is also the breadwinner). I wish I had words that would alleviate your fears. You have a tough road ahead of you but you have to pull it together for the kids. There were days when I knew I would have not gotten out of bed if it weren't for them. Just take things one day at a time. If you focus on 10 different tasks at once you will go crazy. Every day I make a list of the things that need to get done. Then I pick the most important ones and focus on that. You will really start to prioritize and find out that some of the things that you worried about before aren't worth your energy. My thoughts and prayers are with you and your husband as you begin this journey.

lily33

pattynonews's picture
pattynonews
Posts: 176
Joined: Aug 2009

I can't remember life before cancer, we found out 3 months after Jack and I got together he had cancer, And we love each other dearly, he is my soul but I will be the first one to admit, I get angry over it too, It's hard not going out and having fun and doing all the other things we use to do, we are both in our 40's and this was suppose to be a second start for both of us, and new beginning, it was a new relationship, and yea there are days Im so mad, and upset, but I would have it no other way, I know what I am doing it making Jack better, and I know no one would take care of him like I do, I stay on top of his doctors, all his meds, his supplies , if I don't who will, and he wants no one else, I don't know what it is to have a normal life anymore, I call it living the life of the double sword, I don;t love Jack less because he has cancer, I just did not know that I would feel so alone, most of the time now, His therapist told him one day, Jack you have the easy part, Patty has the hard part, she goes through everything you are going through plus her own feelings Being a caretake is so hard, but I am also thankful Jack is so caring, and not mean or nasty He tells me he loves me everyday ( sometimes wakes me out of a dead sleep to them me ) he still always holding my hand, And we were at the cancer center yesterday and this patient was being so nasty to her caretaker, and I just wanted to say something to her, Jack gets in hiw moods and I tell him just becasue you have cancer there is no excuse to me nasty, Just like we are the care taker you too have to show the same respect, We are here by choice, we want to be here, because we do love our love ones, wow I just answered my own question, Why am I here, becaus I do love Jack and I want him to have the best care, Sometimes you just have to write it down to see it

newbride
Posts: 142
Joined: Jul 2009

Patty you took the words right out of my mouth. All I can say is WOW. I feel like I could have totally written that myself. My husband and I are also in our early 40's just starting our life together. He was diagnosed with the first tumor 8 weeks before our wedding. The second tumor showed up the last day of our honeymoon!! We have not spend one day of our married life without cancer, without a hospital visit or some sort of surgery - ironically enough his second surgery was on our 1 month anniversay!!! Would I have walked away had I known this before we decided to get married? Not in a million years! Like you I too am on top of the doctors, etc in fact I was telling a friend tonight that my husband said all the doctors ask about me. My friend said I must have made an impression, I told her "Well, I hope it was the one that says don't bullshit me I am one step ahead of you and I know how to do my research and homework".

Right now he is gettign the most aggressive treatment possible -- 2 doses of radiation a day and a 24 hr chemo drip. They just did another biopsy this morning on something they think might be another tumor -- if there is another tumor in the middle of all this aggressive treatment I think we might be doomed but I am not giving up and I will not let him stop fighting.

ruthelizabeth
Posts: 146
Joined: May 2009

When we got the diagnosis (papillary renal cell cancer,metastacized to lungs and lymph nodes and now subcutaneous tissue), I told my husband (now 7 years, 1 month, 5 days) that he didn't have cancer; WE had cancer. I may not know what he feels like or exactly what he's going thru, but I do all I can for him and share as much as he'll let me. I know somewhat more than he does about the drug he's just started on and also what the dr. is saying about possible outcomes. He knows more than I do about the specifics of how he feels.

He's still active and busy and as positive as he can be, given that this drug is a response to unexpected, rapid regrowth and spread of the cancer. When I'm with him, I'm as positive as I can be. Our love has always been strong (even on the occasions in the early years of our marriage when I walked the dog and screamed -- it is possible to love someone and have moments when you're not sure you like them). This has brought us even closer together.

Lately he's been a tad less patient with situations -- which is understandable. I am trying to find a way to get my foundation more stable as my concentration at work isn't as good as it could be. Since hibernation isn't an option, I'm just doing the best I can.

If I'd seen this coming, would I still be here? You betcha. I can't imagine him going thru this alone. Nobody should have to be that tough.

Beckymarie
Posts: 358
Joined: Aug 2009

Yes, being a spouse of a cancer patient is very difficult. Your life changes in a blink of an eye. My husband and I had a very active social life and now it is day after day of managing his cancer....meds, doctor appts.,insurance issues, etc. We have been doing this for 6 months and can't say it has gotten any easier, just adjusting to a new way of life. My husband's prognosis is not good and I need to be there for him. Hang in there.

John23
Posts: 1832
Joined: Jan 2007

It isn't the cancer that ruins a marriage, it's the drugs, the painkillers
and the anti-depressants. These drugs change thinking and moods,
it can create anger, or degrade normal feelings and actions.

It amazes me that so many care givers ignore the situation,
instead of recognizing it as a drug problem and learning how
to deal with it.

As a cancer victim, I fear dying. It's a real fear, and well founded.
My wife is not dying. She may be suffering with me, but she
will be alive after I die, just as you care givers will be after your
spouse dies.

As a care giver, and one that is not facing the end of your life,
you do not know the fear of never seeing or hearing a thing
you've come to love (or hate) ever again; a total fear of losing
everything, all at once, memories included...forever.

That is what your dying spouse has on his or her mind, and
that fear is overwhelming. Your words, and comments regarding
how bad tolerating the situation is for you, is shallow to one that
is facing inevitable death. You will get over it, they will die;
you will face another tomorrow, they will never again.

Try making each and every moment count. Don't give advice,
give love and attention. Make that honeymoon happen again,
try to re-light the candle and live; It'll go further than any
medication available.

(my 2 centavos)

angelsbaby's picture
angelsbaby
Posts: 1160
Joined: May 2008

Right on,,, My husband was very scared and now that i am alone and when problems come up i just think this isn't crap compared to what he went threw with the colon cancer and dying to. I miss him.

michelle n

SonSon's picture
SonSon
Posts: 186
Joined: Jul 2009

In defense of caregivers and the hell they go through - they will never just "get over it"... We will be scarred in our own way.
You have the trunk of the elephant while others may have the leg, the tail, the belly...
It is perspective and we all need to respect that every party suffers regardless of their perspective.
As for me and my mother-in-law I am trying to make her days lovely and find any excuse to make her smile - or, a real prize - laugh.
As for memories, sounds, sights that one may never see after they die...I personally believe that death is just a stop along the way...and that we will have opportunity to see all that we have known and also new things we have never known.
Not everybody can wrap their head around that idea - but that is what I have and would hope someone else would find it comforting as well.
Fatima

my two guinees

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