CSN Login
Members Online: 11

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

a_oaklee
Posts: 161
Joined: Nov 2013

My husband was diagnosed with clear cell RCC with bone mets 2 years ago.  Since then I have really appreciated the knowledge that has been shared, and the compassion and support you have given to me, so that I can help my husband.  I am asking for some advice on ideas that may help me.  It's so difficult sometimes and I know that this isn't the place for me to share with all of you.  Caregiver worries are different.  I do realize that there is a caregiver thread on this site, but it has very limited visitors.  Do you know of another website that would be helpful for me?  Is there anything that you can share with me that has helped the people in your life?  Thank you.  Annie

 

Stros2013's picture
Stros2013
Posts: 31
Joined: Aug 2012

Annie,

 

Take a look at Smartpatients.com.  There seems to be a pretty active contingent of caregivers on the site.

 

Best of luck

CC

a_oaklee
Posts: 161
Joined: Nov 2013

CC:  Thankyou very much for responding to my request for help.  I will check out Smart Patients website.  It's helpful to know there is a caregiver section that is active.  

garym's picture
garym
Posts: 1651
Joined: Nov 2009

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

foxhd's picture
foxhd
Posts: 1897
Joined: Oct 2011

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.

sblairc's picture
sblairc
Posts: 84
Joined: Feb 2014

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. 

twinthings's picture
twinthings
Posts: 399
Joined: Jun 2013

Hi Annie,

I pray I am never in your shoes.  I really cannot imagine watching my husband or, God forbid, one of our children have to deal with cancer.  It must be an overwhelming sense of helplessness, for you.  It sounds like your husband is a lucky man to have such a compassionate wife.  I wish I could offer advice and words of wisdom but, I have none.

My husband is as loving and caring as any girl could ask for.  In our 32 year marriage he has cared for me after roughly 12 surgeries, never ever complianing.  And I've let him, graciously!  But, this is different.  I have found it really hard to open up to him about my feelings of fear of recurrence, my feelings of being a cancer survivor (that still sounds strange to say), my anxiety at scan time (this Friday...YIKES!) and so many other thoughts that occupy a large corner of my mind.  I think more than anything, I don't want to be THAT girl.  That girl that thinks every ache and pain is a cancer lurking.  I don't want to be seen as weak.  I've always been level headed, laid back and pretty easy going.  Cancer has changed me.  Cancer has made me paranoid and negative.  I don't voice these things to him, or anybody for that matter.  I just do the best I can to keep my crazy from showing around him and the kids, and every other person, for that matter.  I just act like it's no big deal, meanwhile, inside I'm quietly freaking out.  Still, 9 months later.  Despite all the voices in my head, it's a very lonely feeling.  If I were to reach out to a support group (not cyber) I think others might see it as a sign of weakness. 

So, kudos to you for the love and support you give your husband.  Don't lose sight of both of y'alls emotional needs.  I think my dear sweet hubby thinks he's got my every want and need covered and, for the most part, he does.  But he really is clueless, bless his heart, when it comes to my emotional well being.  My fault, not his.

Sorry for the rant.

Sindy

 

 

GSRon's picture
GSRon
Posts: 1211
Joined: Jan 2013

I truly feel that the Caregivers out there are real Angels..!!  And I saw a suggestion that a Caregiver often needs a break...  take a day or two "off." to do something for "You."  Perhaps that would be helpful...   There are few boundaries here.. just no fighting... all else is pretty much open...  Holler, scream.. etc.

Ron

cubsfan9
Posts: 43
Joined: Oct 2013

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
Posts: 161
Joined: Nov 2013

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.

 

NanoSecond's picture
NanoSecond
Posts: 517
Joined: Oct 2012

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's picture
mrs_blkjak
Posts: 87
Joined: Apr 2013

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. 

GSRon's picture
GSRon
Posts: 1211
Joined: Jan 2013

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
Posts: 161
Joined: Nov 2013

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.

NanoSecond's picture
NanoSecond
Posts: 517
Joined: Oct 2012

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.

a_oaklee
Posts: 161
Joined: Nov 2013

I would love to hear some good exciting news.  I will stay tuned Neil.  I believe it's worthy of starting a new thread. 

a_oaklee
Posts: 161
Joined: Nov 2013

Hi Mrs. Blk.  Thanks for posting.  I'm so impressed with you and how you have helped your husband.  I would think that your past year has been all about your husband and your quest for treatment.  And you've done a fantastic job in helping him.  My past two years have been all about my husband too.  I feel guilty thinking about myself or my needs.  They seem so trivial in comparison to a person fighting for their life....

Strange thing happened to me...I needed to go to a new doctor (for me).  They asked me what medications I'm on and I couldn't remember the names.  But I had a big list in my purse of all my husbands medications.  Then I went back to our family doctor and we talked about my husband instead of me.  The nurse had to call him back into the room, because we never addresssed the issue of why I was there.  These two events are so trivial, but symbolic.  I'm not taking care of myself. 

You are correct about all the changes in our lives.  The loss is staggering.   I try to count my blessings and make a practice of it.  Maybe that's how I have managed the past two years.  Thankyou for offering to correspond with me.   

a_oaklee
Posts: 161
Joined: Nov 2013

Excellent speaker...needed a tissue. 

Thanks Ron

Billy's Wife's picture
Billy's Wife
Posts: 23
Joined: Jan 2014

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

foxhd's picture
foxhd
Posts: 1897
Joined: Oct 2011

from all of us. There is so much that everyone can share in how cancer has affected us. For caregivers the issues can make one feel helpless. It is very emotionally painful. I wish more caregivers would express themselves here. Opening up to others is very therapeutic.  It is an opportunity overlooked by many. This forum is not for patients only.

Billy's Wife's picture
Billy's Wife
Posts: 23
Joined: Jan 2014

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

Arleen

Subscribe with RSS
About Cancer Society

The content on this site is for informational purposes only. It is not a substitute for professional medical advice. Do not use this information to diagnose or treat a health problem or disease without consulting with a qualified healthcare provider. Please consult your healthcare provider with any questions or concerns you may have regarding your condition. Use of this online service is subject to the disclaimer and the terms and conditions.

Copyright 2000-2014 © Cancer Survivors Network