Taking care of a spouse/partner

SonSon

luvher03 said:

My own experience
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 **** 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....

it sucks... (luvher03)
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

luvher03 said:

My own experience
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 **** 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....

I'm so glad I came back to
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.

RE

zahalene said:

To all the above posters....
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.

You are fabulous my friend!
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

luvher03

MichelleP said:

I'm so glad I came back to
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.

to Michelle P and SonSon
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

luvher03 said:

to Michelle P and SonSon
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.

michellep
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.

RE

luvher03 said:

My own experience
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 **** 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....

LUVHER03
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

sue Siwek

luvher03 said:

to Michelle P and SonSon
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.

i think we all go through a
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.

seanslove

luvher03 said:

My own experience
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 **** 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....

not fair
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

RE said:

LUVHER03
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

Luvher03
I'm glad that you clarified yourself. Good luck to you and your wife

MichelleP

seanslove said:

not fair
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.

Seanslove....You are such an
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!

cathlinberreth01

MichelleP said:

I'm so glad I came back to
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.

taking care of yourself
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

cathlinberreth01 said:

taking care of yourself
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.

Cathlin
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

cathlinberreth01 said:

taking care of yourself
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.

Cathlin
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.

SonSon

luvher03 said:

to Michelle P and SonSon
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.

Empathy...
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

luvher03

MichelleP said:

Seanslove....You are such an
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!

love
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

luvher03 said:

love
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....

luvher03
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...

zahalene

RE said:

You are fabulous my friend!
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

A rose by any other name....
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.

newbride

trish07 said:

Caring for spouse
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.

You took the words right out of my mouth
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

trish07 said:

Caring for spouse
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.

I feel like that some days,
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

09wazzu09

Hang in there...
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.