Would you mind giving a caregiver some helpful ideas for emotional support? For me.

garym said:

Support groups...

Annie,

Check around for support groups in your area, face to face connections can be very beneficial. Cyber hugs are nice, but they don't hold a candle to the real thing.

Hang in there,

Gary

open up a bit here. Start a topic relating to caregiver issues. There are many of you here. I'm sure you will get a response. You can also ask for private messaging if you wish. Good luck.

foxhd said:

You can also

open up a bit here. Start a topic relating to caregiver issues. There are many of you here. I'm sure you will get a response. You can also ask for private messaging if you wish. Good luck.

This feels like a safe place for me to come as a caregiver. I have a different situation than yours but with a relatively recent surgery for my husband, I still consider myself still a caregiver.  I lurked for a while before posting here and the information is very helpful. 

I do see a therapist "in real life." I started after we got home from the hospital and I found myself overcome with anxiety about recurrance. Seeing her has helped me immensely (once I found someone I felt like I connected with). 

If you start any caregiver threads for specific topics,  I would be more than willing to contribute as I can. 

Good Morning, Annie!

I would second the suggestion to visit Smartpatients.  There are several very helpful threads in the Caregivers section.  I have received a lot of support/comfort/reassurance from reading the various posts.

Being a caregiver is a challenge (notice the understantment!!).  It sometimes feels like walking a tightrope over the Grand Canyon.  You need to support and encourage your husband but not enable him...he needs to do the "normal" things he is able to do.  I found myself wanting to do everything for my husband at first and that didn't work out so well!!  I find that I am the 'researcher' and must tactfully and gently share information with him.  We are getting better in this area...I know he listens to what I say and he  now speaks up and asks questions when we go to the doctor's.  I know this is all very hard for him, and I try not to be resentful...but sometimes is it hard!  We often can't do things because he isn't feeling up to it...I can't cook the kinds of meals I used to...  I have my good days and my bad days, just as he does. 

Suggestions?  Communicate!  Encourage one another!  Look for the positives!  Realize that you are going to have those bad days and that is OK!! Find a friend!! (I have a friend who makes sure to call me regularly to chit-chat about things other than cancer, invites me out to lunch, and with whom I can 'let my hair down' when I need to and just vent.  That helps a lot!).  You are not alone...

a_oaklee said:

Caregiver?

Thank you all so much for responding to me with all the ideas, compassion, and encouragement.  All of you helped me feel better today.  Not so alone.  Each and every one of you gave a gift to me, and it's so appreciated.

My husband and I are just in two different worlds.  He doesn't do any research and doesn't ask any questions per se at the doctors visits.  Consequently, physicians seem to read that they don't need to say much.  He has never had a conversation regarding prognosis.  He doesn't want to know.  He is very optimistic about being cured.  He is very hopeful, and if he has those kinds of conversations it will have a detrimental effect on him (he says).  I've read everything I can in the past two years and have noone to share with.  It was my husbands wish that noone know that he has/had cancer (except our kids).  It drives me insane, but I respect him, it's his health and his wishes regarding privacy.  So, I can't talk to anyone, and he doesn't want to talk about "it" with me.  I've become reclusive.

Sblair:  Thank you for sharing.

Twin Things:  You nailed it when you said "an overwhelming sense of helplessness".  That's it in a nutshell.  I appreciate you sharing with me.  I'm so happy for you that you have a wonderful husband.  I think sharing your feelings of anxiety with your husband is an act of trust and intimacy.  I wouldn't think of it as weakness at all.  But I am glad you shared that thought, because perhaps my husband thinks its a weakness too.  Good luck on your scans on Friday.

Garym:  I would love a support group meeting face to face, but cant do it in my small town/city.  Everybody knows everybody and I'm honoring my husbands wishes. 

Fox:  I appreciate that you responded to my question and gave encouragement that's it's ok to post here.

GSRon:  I love how you think.  I am going to give it some thought.

CubsFan:  Thank you for sharing your personal experience and some ideas.  I hardly feel like a "caregiver" anymore.  I was during the surgeries.  But I just don't know what to call myself.  "The wife"?  Sometimes my husband does need some help, but he doesn't like it coming from me.  I think it's a manly thing...  I've tried to explain to him that sometimes it sure feels like rejection.  He has gotten very quiet and doesn't share much with me.  It's quite lonely.

 

Hi Annie.  It has really troubled me to read what you have been going through.  This is not a disease that anyone should ever confront "alone".  In fact it is vital to identify - and then work with - your own custom-built support "team".  This team should not just be his doctor(s) and/or you, BTW.

Although I may be out of line to suggest this it sounds very much like his emphatic state of denial may be more of an expression of depression and that he may feel that he has to cover it over with an air of bravado.

I know that Fox thinks I overdo the research "bit" but my thinking is that knowledge is power.  Yes, there are lots of aspects of this awful disease that at times are downright scary.  But, for me at least, the best medicine for that is just to try to "face the brute" head on.

Does your husband have anyone else in his life that he feels he might confide in? 

mrs_blkjak said:

In my opinion, you absolutely

In my opinion, you absolutely need to find someone to talk to. I think it's great that you are respecting your husbands wishes, but this is not about only him (and I mean no disrespect in saying that). My whole world has been turned upside down by my husband's diagnosis, as I'm sure yours has been. Not only are you now in a caregiver role, but you are undoubtedly grieving the life you imagined you'd have, feeling scared, missing some of the reciprocity that you had previously in your marriage.....I could go on and on. I really feel like you need a friend to talk to, if not many. If it were not for the friends that have held me up over the last year, I think I would have gone insane! I hope you can talk to your husband about your feelings and let him know that you will continue to respect his wishes as much as possible but that you need to address some of your own emotional needs too. I am always willing to talk as well, so feel free to message me or communicate in a thread. But someone asking you how you are doing when you're needing someone to care is so important. 

I snagged this video from SP, but this is too good not to share...  yes I will admit, watching this video made me cry a bit..

https://www.youtube.com/watch?v=ivjlBstqu_o&list=TLfdF2-Kvg_JkAfauM6o9saoefVu-Cxi_Z

Ron

a_oaklee said:

Thanks Neil...

Thanks for posting Neil.  I think it was very kind of you to be thinking of me and for trying to help.  I totally agree with you that I need a team, and that is why I was looking for ideas of what other spouses do to help themselves.  In my opinion, my husband also needs to have a team.  He is content with it being the doctors and myself.  He has always been very private and quite strong.  No, he does not have anyone besides me, and he doesn't feel the need.  We have been married a long time and as anyone knows sometimes it's not easy and you can't have your own way.  He wants noone to know what we are going through.  He's the patient, it's his medical condition, and I have to respect that.  Or at least I will say that it's just one of those things that you go along with.  You were not out of line re comments on depression and bravado.  I appreciate any thoughts.  He thinks talking about any of it is depressing.  For him it's not helpful, for me it is.  I agree with you that knowledge is power, but sometimes I really do have to take a break.  I've been thinking of you too, and have been looking forward to a new thread from you in regard to your new plan.  I hope you are well.

Well Annie, as you know, you have the full support of everyone here - and myself of course.  It's too bad we can't all just get together somewhere  - if even only in "virtual" space. 

It sounds like you are dealing with one tough cookie - but in the end I agree that you have to try to honor his wishes, even if they may seem counter-productive.

As for me I hope to be able to post some very unexpected and exciting news tomorrow. Stay tuned.

I didn't find this website until after I lost my husband.  I posted our story when i first joined but have felt out of place.  My heart breaks reading all of your stories and I feel guilty because you are the patients, so far I have not had cancer myself.  But it is always a possibility for anyone.  I lost my mother to breast cancer at age 63.  My father was her main caregiver at the time but I wasn't far behind.  Then 11 years later I began that walk again with my husband and this time it was hands on. He was 54 at diagnosis.  I also felt guilty because he lost his battle and I don't want to discourage anyone.  Everyone's experience is different!

It is so generous and loving of Sindy to say that she wouldn't want to walk in the shoes of a caregiver even as she,herself is a cancer patient.  This RCC journey has to be one of the hardest any cancer patient ever faces.  I watched my husband face with all the anxiety you guys describe feeling, countless scans, MRI's, recurrances, bloodtests, radiation, surgeries, sutent, a clinical trial. 

He too didn't want friends to know how bad things were so some of his friends were shocked when he was facing his final battle.  It broke my heart for them as well. I gree with Annie that it was his battle and I had to respect that.  But that doesn't change how hard it is.  I too stopped taking care of myself.  I never missed a mammogram because of my Mom until his last few years then i missed three years worth.  I am now catching up with my own health stuff because it is hard to go to doctors after all he went through and getting so much bad news.  I'd rather never go again. Just like Fox, Sindy, Dijinnie, Neil, Ron  to name a few my husband had great strength and courage.  He believed he could win this war and he gave it all he had!  I wish he had the chance to meet all of you I think he might have enjoyed sharing anonymously like this.  He at least would have lurked.  But then I think he would have wanted to share to help everyone else the way you guys do.

 It is hard for me not to share about regular stuff so this journey changed me because I had to keep some things to myself even though my heart was breaking.  I did find a therapist and an still seeing her.  I think that saved me from going insane.  If I can help anybody please let me know.  I have all this information and no place to put it now.  I found this website because I am now searching for a way to help.  Cancer, all cancer has to be cured once and for all!  My husband feared that it has become big business and they don't want to cure it.  I have trouble with that because everyone knows someone who has had it so  how could that be?   

In closing I think you guys are the most selfless and brave people ever anywhere!  When we traveled to India for a clinical trial and my husband had a seizure there because we learned then that he had brain mets, I emailed our kids that their father was the strongest, bravest person they would ever meet--that's all of you too! You encourage others when they're down and you applaud each others victories.  You are among the angels my husband and I met on our journey, and there were many, it was quite a story.  Annie and any other caregivers that might want to talk post me privately or on this site.  Since I got to know some of you by lurking I can't help but to check up on you.  You are all in my prayers.

Arleen

Thanks Fox for saying that, I know you mean it.  My husband would have liked you alot! 

Arleen