Hi Everyone:

As I have been following the current thread about caregivers and their feelings, it occurs to me that maybe we are getting a bit caught up in the semantics of depression vs. "being down" when maybe we should focus on the underpinnings of what the feelings really mean for us.

Everyone that has posted has echoed the same sentiment in one way or the other. It is an overwhelming, exhausting, and at times, overpowering experience to be with and care for someone you love who is undergoing cancer treatment. Like the person undergoing treatment, the partner/caregiver doesn't get much sleep because he/she watches, listens, and waits to be sure all is okay in the middle of the night when breathing is often difficult and sputtering and choking replace snoring as "normal". But, both the patient and caregiver still get up the next morning and go to radiation, go to work, and fundamentally do what needs to be done to feed and care for children. In a sense, both are survivors in the process and should be honored but often aren't because the "patient" receives most of the sympathy.

There are indeed days when caregivers are too overwhelmed and exhausted to function and respite from friends and medications are often helpful in those circumstances. As Dee mentions, medications can enhance the caregiver's ability to be present to the client and help calm the fury of fright that is always present in the caregiver's mind.

I remember trying to share with Dave how I was feeling mid-radiation, and while he understood where I was at, he was simply too physically and emotionally drained to be present back to me which was difficult and at times, made me angry then guilty for feeling angry.

Overall,the hardest part for me was the sense that despite sudden adversity, life goes on in mundane ways such as sports practices and paying bills. I stood in many a cold hockey rink at the crack of dawn this past winter wondering when it would be light enough out to call and check on Dave who I had left "sleeping" at home. I probably would have left an open phone line beside him if I could have just to calm my own pervasive fear and worry over "divided allegiances" to my children versus Dave.

During that time, I felt all of us around Dave were vulnerable and when I finally realized that I could acknowledge it,work with it,talk about it with my kids,and go forward. The epitomy of my neurosis came one morning when I took my kids out for breakfast and couldn't reach Dave for the big "check in" phone call. My oldest son picked up that I was exhausted and becoming out of control anxious(not a good combination for moms on a good day let alone a mom with a partner having radiation) and he calmly and sweetly suggested I drive back to our house and check on Dave while the boys would stay at the restaurant with my family. Such wisdom from the mouth of babes! My son focused not on what was wrong with me but on what was right about my love for Dave and the message got through and I was so very proud of him. Of course, I drove back and checked on Dave who verified that I had finally lost it and then thanked me for being crazy enough to care so deeply about him.

Part of what got me through the hell of radiation was to share with my boys(11 and 6) how I felt and how very scared I would be if one of them were sick...but how very present I would be just like I am for Dave. Role modelling love comes in many unexpected forms and here was one way I surely didn't sign up for but the lessons Dave and I and the boys have learned are invaluable. When one member of the family is ill...the whole family unit becomes ill. Mandi, at some point, this hell can be reframed as opportunity. Time heals... and right now,Mandi, you need more time.

Frank & Dee-you guys remain my heroes for the grace and dignity you demonstrate every day.

In short, there is no magic recipe for wading through this high water-but maybe one isn't needed because somehow, somewhere, with help of meds or not, but mostly with inner resolve and love for our partners, we do it and get through it...every day...and I'll give all of us caregivers a pat on the back and say we do it well.

Sharing the oral cancer experience with Dave has taught me that having a situation look pretty on the surface or run smoothly may no longer be a necessary goal for me. Instead, finding meaning in the joy and pain that is real love and sharing it with others is far more meaningful.

Okay, I'll get off the soapbox and give someone else a turn.Did I mention I also learned I'm irreverent when it counts and seemed to have grown some testosterone based appendages that I'm really proud of...?

In Solidarity,

Kim

[quote]Originally posted by kcdc:
Hi Everyone:

Did I mention I also learned I'm irreverent when it counts and seemed to have grown some testosterone based appendages that I'm really proud of...?

In Solidarity,

Kim [/quote]LOL, I don't think you have or you wouldn't refer to "them" as appendages.

Kim,
Your post is so insightful that I think I'll print it and post it beside my desk...to read during those times when fear and loss of confidence sneak into my day.

Thanks,
Anita

Okay, so maybe I can't really function as a male if I can't get my references to anatomy correct!

Anyway, thanks for poking fun at me (god knows Danny G does it all the time!).

Thanks also for the kind words from Anita. The pedestal you elevate this message to is a bit lofty but I humbly accept the praise with gratitude. It's easy to speak from the heart when you have had good mentors-and Dave. my boys, and the trusted circle of friends here at OCF continue to amaze me with their wisdom every day.

The other thing I meant to say earlier and didn't is that the post-treatment "watchful waiting phase" becomes almost more of a curious hell for caregivers than the active treatment phase is because the survivor has survived and relaxed some while the co-survivor/partner remains on high alert. I'm still trying to figure out how to process my feelings around life in the post-treatment zone.

Kim

Kim,
As you know, I live alone and mostly cared for myself throughout my ordeal ( with my mother, sister and girlfriend, who was busy with her own family and career, nearby ). I didn't have any actual caregivers around all the time to yell at and take my frustrations out on. Not a bad deal really...I only yelled at my mother and sister in the very beginning!

Danny G.

Kim,

I need to thank you too, your post brought me to tears and gave me strength in knowing I am not really as alone in this as I appear to be...I think I will follow Anita's lead and print it out for future inspiration. My husband is still in treatment (30 rads done, 13 to go!) and we still face the likelyhood of a neck dissection, but I'm already anticipating the "watchful waiting phase" because I know it will be a difficult time too. I think I keep looking for "and end" and what I need to keep in mind that there is really no end...and that is probably a good thing.

Keep the faith everyone...
Jan

Well All, I stayed away for a couple days, cause I didn`t mean to offend anyone.......to Kim and Dave, who have met Frank, thankyou for your kind words.....After being called a freak a couple of weeks ago, he needs to hear good things. An unplanned trip to the doc`s this week brought us another abcess. We have a clothes basket full of medical supplies....We both have come to realize the light at the end of this tunnel will probably be that bright one Frank sees, if you catch my drift...If you take a look at his picture,you can see the results of 7 surgeries in less than 2 years.....and yes, he limps because his leg bone is now his jaw bone....but right now he`s excited about the return of the hummingbirds to Downeast Maine.....he has managed through all this crap to regain the wonder of childhood.....he has never once complained about losing the ability to eat or talk or smell his beloved lilacs.....he has managed to go from 118 lbs, less than 2 yrs ago to 180 lbs with a peg tube.....for awhile he was stuck on blue pepsi `cause he liked the color.....I can truthfully say that he has won the battle with cancer, even if it takes his life, he truly has gone beyond the physical....if you asked him, he would just say he`s doing what he can, he doesn`t consider himself a hero, but he truly is on the hero`s journey, and I feel like the bumbling sidekick. We`ve fought lots of monsters but that`s part of the journey. We still have a healthy, although warped, sense of humor. We decorate him for holidays, latest was bunny ears.....we don`t look for the light at the end of the tunnel, but we stop at every little twinkle along the way, and from the bottom of my heart I feel truly honored to part of this journey.........again, thanks Kim for your kinds words, will tell Packer......to All Be Well.....Dee

dee
By no means was I offended by your words. You express yourself beautifully and both you and your husband are heroes in this journey whatever the end of the tunnel brings you are both blessed to have a great love for each other and life. I somewhat envy that. I'm curious to know if packer was a positive person throughout his life. Unfortunately my husband has always been lacking a positive outlook little makes him happy except our 15 yo daughter . His losses are far greater because he can't see any light.No self pity here. I'm very use to it after 21 yrs but it does make my journey more difficult but manageable. I wish you both the best and enjoy maine
Diane

Dee,
God Bless you both. Please give Packer a hug and kiss from Maryland. You are an inspiration.
Hold each other tight and be proud,
Mandi

Hi, Dee- When did Packer have the flap? It must have been successful if he is walking on the leg, and bone still in Jaw? I had one and it failed it took ten days which is rare usually fails right away. I assume he has had his for awhile. That is so great that it worked. Do not worry about the limp it will go away, leg fills out and if you walk and exercise, the dog walks and a little gardening will do it and it will get as good as new. This summer I even wear sandals with heels and it works. You explain to him how good that makes my leg!