Hello caretakers and patients...

I wonder how I can be more helpful as a caretaker...John, (known to folks on this site as my 40 yo adorable husband, nonsmker, T2N2, s/p surgery, with trach and G-Tube, s/p taxol x 3, radiation now on 7 of 32 with cisplat and taxol in the last few weeks) is understandably!!!... totally pissed at times...especially with being tired...I know that he is most comfortable with me...he doesn't show or share his anger with anyone else...I listen and listen and hold him (when he's not too achey)...try to keep our 3 year old busy and as quiet as possible...but, not sure if there is anything else I can do...

any advice would be great...thank you all,

Sara

I am pissed too! I guess I don't know what else to feel. Tired of being sick, tired, vomiting, gagging, in pain, the weight loss! Sounds like youv'e heard it all from your husband. Tell him I said to get on the bulletin board & scream & yell at us, cry all he wants to, we can take it!! I know my wife feels helpless also, but damnit if she doesn't give up. You & her are stronger than I am for sure. You just be there for him, but keep your chin up & be strong. He will get through this & so will you.

Sara,

Erik is spot on. If you don't get angry through this thing, you aren't human. That is strictly from a man's perspective. My wife, GOD BLESS HER, is the true warrior. I was just along for the ride. I was so rough on her at times that I can't believe she didn't just haul off and punch me. Actually, she may have and the meds kept me from remembering . God put woman on this earth to bear the pain of childbirth, walk by our side through everything...and push us when we can't keep up with them!

Ed

Sara,
It sounds like you are already doing a great job! I was very pissed too at times and took some of it out on my loving wife. They were difficult times in our marriage.

He has a ways to go and it will only get worse. I would recommend a support group for you to better understand the changes that he is going to go through and to obtain better coping skills for yourself. We are always here to help also.

The treatment will really beat you both up. Just take it one day at a time.

Working on acceptance and possibly a spiritual reason or solution for all of this is the best I can come up with.

Sara,

I agree with Erik. Get John on this website. We have all been where he is. Don't take is anger personally, just be honored that he shares his deepest feelings with you. You are truly a patient and caring wife and mother. I have a 4 and 2 year old and sometimes it's really hard having the kids around when you're so tired. You have to be "on" all the time. Sometimes my husband would take them to McDonalds to eat and play for an hour so I could decompress so to speak. Hang in there! You caretakers are wonderful people. Even though it's hard for you to see your loved one suffer, we couldn't possibly get to the other side of recovery without you.

God Bless you and John!!!
We're here for you.
Lynn

Hi Sara
Well as a carer and a patient I would say you are doing a great job.. the first job of a carer is to understand that you are always wrong.. the second job is to learn to swing from ceilings and climb walls.. it looks better from up there..
you are doing ok lady..
love and hugs
Helen

Hello all,

You are so wonderful...I cried (so nice to share and hear the guy perspective)...and I belly laughed (come to think of it , i am always wrong and yes, I'm am learning to climb walls) and thanks for the suggestions...

Lol,

Sara

sbk: Hang in there kiddo. This is difficult treatment he is going through and we all give our saintly caregivers a bad time. Because the treatments get to be too much sometimes. However, my wife, who takes such good care of me, has had to straighten me out a couple of times to get my attitude in place. A quiet discussion on the patio with her talking and me listening usually did it. Of couse, I am used to obeying after 25 years, but her points of the effects I was having on the kids and the house in general rang very true once she pointed them out to me. By all means, though, have your hubby look at this site. It can give him some ideas on how to cope as well as whats coming. Perhaps he can deal with it better if he knows whats ahead. Be careful with that, though, because I didn't want to know anything until my treatments (rad/chemo) were over. Surgery didn't matter because I already knew what to expect after that having had them before. So hang in there and help him to understand the frustration which causes the anger.

Sara,

If you would like to bounce thoughts off someone that has been through what you are going through (and getting ready to go through) feel free to email my wife, Susan ([email protected]). She will tell you plenty of tense moments that I even laugh at now (even if I don't think they are funny and still take them personally!). I don't remember some so I just bob my head and go along with it, not believing I could have even possibly been like that! God bless you and fasten your seatbelt...it will get a bit tougher before it gets better.

Ed

Ed you are one in a million..
my husband would no more admit he was wrong than fly to the moon.. 2 gold stars for that... now I am the patient as well as the carer it is real fun at our house..
love and hugs
Helen

Sara-

As a fellow caregiver/wife I am feeling your frustration and pain. I was there not so long ago and reading your post brought it all back. Know that you are not alone and that we have all been there...with the "pissed off" moods and the feeling that no matter what I do he's not going to like it. I had to keep reminding myself, sometimes every second of every day, that it wasn't my husband speaking but the cancer. That helped me not to lash out too much at him. Not that I'm a saint and didn't yell at him at times. Sometimes yelling was good for my sanity too. He would just sit there and watch me yell and cry and then he would finally hold me and comfort me...seemed like a strange reversal, but it felt good. I must say that what really helped me was the wonderful people in my support group. I don't know how many family and friends you have that you can really count on, but you MUST take this time to say YES to their offers of help. I didn't have a small child tugging at me for my time and care so I can only imagine how difficult it must be for you. I hope you have someone that can give you a break and watch your toddler for a few hours or maybe even a sleep-over. If you are anything like me you feel like you will be burdening your family/friends with too much...but believe me you MUST do this because you will be no good to anyone if you don't take some time for yourself. During the worst part of the treatment...the middle and end...I had to take a leave from work and had my sister & mom running errands for me...my husband just didn't want anyone to see him or be around him when he was feeling and looking so miserable. It took every bit out of me to do all the things that were needed, from GI tube feedings to remembering all the medications that were needed to cleaning humidifiers, etc. etc....you know the story. I don't know what I would have done without my support group who just showed up at my door with my dinner and my husbands meds...no questions asked. I also forced myself to attend caregiver support meetings at the cancer care center where my husband was being treated...it was a big relief to just sit and bear my soul without worring that I might be burdening my husband who already had enough to deal with just fighting the cancer. Last but not least one of my biggest mental unloading was to send weekly updates via emails to family and friends. They always sent uplifting responses that helped not only my husband but me. I usually went into the detailed reality of what being treated for tonsil cancer really means...something that most people never realize.

Well...that is enough for now. You are a true blessing and I'm sure...even though he may seem "pissed off" all the time...your husband knows just how blessed he is to have you by his side. Hang in there and keep coming back to the OCF...everyone here is wonderful!

Sara,

I truly believe it's more diffucult being a caregiver than the cancer victim. We seem to show are anger to the one we love the most. My wife is a nurse and is a great caregiver as well as a great human being. I was so lucky to have been married to her for the last 32 tears. Will be 33 years on Sept 18th.

I don't have any advice for you as I feel you are doing as fine a job as can be. Take comfort in knowing your husband knows this as well. Your love and concern for him shows in the tone of your posts. I hope all goes well for the both of you and your family.

Your Friend, Dan

Hello fellow caretaker!

Now that we're 7 months past the heat of treatment I can tell you these sage words of advice. Hang on to your hat, don't take it personally and... Ed (my survivor) will attest to this - know you STILL can (and have the right to) stand up for yourself! Sometimes its easier to just take it and accept its alot of fear, anger at the disease, disappointment at the prospect of shattered dreams, feelings of inadequacy and exhaustion talking but there comes a time in every faithful caregiver's life when you look your irradiated and withered loved one and say, "I'm sorry you have cancer. I know it's tough for you and you gotta know it's kicking my butt, too. Cancer doesn't have the right to invade your body and you don't have the right to abuse me. We're on the same page, fighting the same ugly battle. If you have something specific you want/need - tell me or I will assume what I'm doing is right and in your best interest."

I don't know your personal situation or the stage your husband's treatment or recovery but as he becomes more able - let him do some stuff for himself. Like I have come to accept (and it makes me feel like a schmuck) you can't be everything all the time.

My heart goes out to you. It's a time when you feel your loneliest and hurt SO bad (for yourself and your hubby). I don't know that I have many answers but I have a willing heart and ear.

Hang in there and rationalize that it's hard for our cancer warriors to rationalize when every ounce of energy is spent trying to kill the enemy (and it isn't us, even though we feel like it some times). God bless you and repeat...

"God, grant me the serenity to accept the things I cannot change, the courage to change the things I can and the wisdom to know the difference."

I promise - it's a bear but it gets better as everyone gets used to the "new normal". Some days are a breeze and others... well, you can guess my choice of words. Some days there's less anger and resentment on your part and theirs. Take those precious moments when the wind dies down to remind him how much you love him and empathize with what you believe he's feeling ('cause we'll never really know).

Amen to all that..
The most important thing for any carer is not to lose sight of themselves.. we all put ourselves third.. 1st patient.. 2nd cancer.. 3 me..(well maybe if I have time).. hard lesson but not a good one..if the carer goes down so does the whole pack of cards..
thank god for this forum and my all my friends on it...
love and hugs
Helen

Sara,
You hang in there sweetie. I, too, as a caregiver cried so much and felt so alone at times. While Dan slept off the treatments (especially from late middle to after end), I cried and prayed and just "nightmared" about the future. My biggest support was comfort after praying to God and a small support group from our church that really helped (from meals to just saying I love you and I care). My boys are grown, but it has been very hard for all of us. It must be very hard to have a small one running around with so much energy! Although, I love little ones and I am sure it is also a highlight! I walked our dog everyday and cried for Dan and others and ask God for healing. The rest is really out of our hands. But every nite I came to this board and got so much encouragement at other stories and bravery. You and your family are in my prayers!
Debbie

Hello everyone,

Thank you, thank you, thank you...your words mean so much. last night, poor John just lost it...actually, it was kinda funny...he through a few snack packs of chocolate pudding on the kitchen wall...I sure in years to come it will be one of our funnier moments :-)...really, how much pudding can one person tolerate!!!!...so I called his sister and she came over and they cried and cried...it was the first time that he could share his fear and anger with someone besides me...he's much clamer...and I had a good cry too!

Thanks for the advice and support...you are such a strong, wise, and funny group...

Love ya,
Sara

Thanks Sara!

For sharing a very funny visual. I agree totally, sometimes I think can I really live the rest of my life on yogurt and pudding? I have to tell myself to keep concentrating on what I can eat rather than what I can't, but it doesn't work very well sometimes.

Hang in there. Tell John we love him.
Lynn

Sara
Wow I'm impressed.. Tell John brown walls are very 70's.. glad you ducked lady... chocolate shampoo no way..
love and hugs
Helen

Sara,

Tell John I am so jealous. Chocolate pudding is my most or second-most favorite thing in the world to eat. From about week 4 of radiation, chocolote first tasted like pure salt and now almost 8 months post treatment, it still tastes a bit like chalk and cardboard. I simply refuse to accept it, though, and even ate some yesterday just in case it tastes like it used to!

I am so glad of the progress, too!

Ed