Care giver to husband w/stage IV

you post pulls at my heartstrings. 

You have found a wonderful place here on the forum, as there are many caregivers, whose expereince you will gain allot of comfort from. 

I cannot help very much, being on the other side of the coin. 

Sometimes the weekends are quiet here, so just keep checking back, and soon you will see people eager to help you in any way they can. 

Until then, blessings and peace be with you. I tell people that Cancer is my physical problem, but the family shares the emotional side. 

Sue - Trubrit

miserable for everyone involved. Possibly there is some 'roid rage' going on but if not I'm not sure why he's lashing out so much. Even though stage 4 is not a death sentence I'm sure you have both thought this might be it. I would ask him if these are how he wants his final days spent? Your final memories of him? How he wants to go out? I'll bet not. Get some psychiatric/mental help, good luck, he sounds stubborn. You shouldn't have to take his nastiness, you didn't do anything!

Easyflip/Richard

Hi Amy, I totally understand what you were saying. My husband doesn't tell me everything and from time to time, he is short tempered too. I am angery and miserable with the whole situation too, but I don't think 2 angers will make things better. I learn to suck up many things, and I am a kind of getting used to keeping doing the things I need to do while I have tears in my eyes.I don't know how many people out there really understand our pain, heartache, fear, worries,exhaust, helplessness,hopelessness,depression and so many other emotions that I even can't describe as a wife and a caregiver. This disease truly affected each aspect of our life and I have to make decisions based on my husband's overall health. I have to admit this is not easy and this is very physically and mentally challenging,especially we don't have any family member who can give us a hand. Anyway, Amy, I am very sorry for what you have been through, and sorry I don't have suggestions for you. I hope you can find your way to comfort and ease up yourself. Take care.

Amy K said:

No Antidepressant

Hi Jen, no he is not on any antidepressant, though the oncologist told me the pill he takes to improve his appetite will also improve his mood. Not seen any evidence of that, though. 

 

 

 

 

 

 

I would try to get him to take something.  My husband takes Remeron.  Which is also appetite enhancer and it was helpful in some ways.  I actually prefer my husband to be moody and angry than depressed...that just kills me and I can't find the words to make him feel better.  His biggest sadness is not seeing our three old grow up and I so get it, I can't wrap my mind around that or what I can say to make it easier.

Fight for my love said:

When I just arrived the U.S 5

When I just arrived the U.S 5 years ago, cancer hit us. Fortunately my husband stayed NED for a while after the treatment, but I lost my career path and I had to think very hard and look very hard  about how to change my career path and do something I will be good at doing. During his NED time, I picked up new skills and new knowledge. When I was ready to look for a job, his cancer came back. Obviously he needed lots of attention, so I had to give up job hunting. For now, we don't know what is going to be next because his CT was clear, but CEA got elevated, yesterday just did a PET. So I don't know what I am going to do next, a kind of wondering...

Same here, pet/ct beginning of jan was clear, but cea is elevated. 

Amy K said:

Marie who loves kitties:

My husband is 73 yrs old. I am a bit younger at 56. He was first diagnosed in Aug. 2014 and has been on Chemo since September 2014. He has stage IV colorectal cancer with mets to the lymph nodes and abdominal lining. He had surgery in August 2014 of an exploratory nature. That is when they found the grapefruit size tumor in his bowel. They removed the tumor along with portions of his large and small intestine. He does not have a colostomy, thankfully. His chemo regimen consists of these drugs: Avastin, Leucovorin, 5-FU, and Oxaliplatin. One of those drugs (I'm unsure which) is sent home in a pump that infuses over a 48 hours period. That particular drug makes him quite ill (excruciating back pain). That pain is somewhat managed by taking 2 hydrocodone every 4 hours until that drug is out of his system. We live in the Mid-West United States. 

Like I said, I completely understand that he has plenty to be angry about. That doesn't mean I like to be his verbal whipping post. I try my best to understand and see where he is coming from but many times his anger just makes me angry in return, which then begets guilt and it becomes a vicious cycle. Yes, you can be sure I will be discussing these issues with his oncologist next visit. Thanks for your post and your kindess. 

-Amy K-

Amy, if I'm not mistaken, it is the Avastin that is causing the back pains.

Keep at his doctors and onc nurses to see what kind o frelief can be given.

For your own care, you may want to look into Imerman Angels - a one on one Cancer support  matching system - for both people going through cancer and for caregivers.

It's so hard - my husband - the caregiver, did not seek any outside support, women tend to be more open to it.

Please know that just like they teach in AA - "It's the bottle talking, not the person you know and love"  the same when going through cancer.  Pain and fear just makes us all not ourselves.

Hope you find some support that will help you keep your strength to support DH.  

Peggy

Hi Amy and welcome.  You will find many helpful people on this board as I have.  My husband started his colon cancer battle in December 2012, sounds similar to your husband's.  He went through 12 rounds of Folfox with the 46 hour pump at home.  He had some issues (more of the cold sensitivity and neuropothy) and had another bowel obstruction after 5 treatments.  They removed the oxaliplatin for the remaining 7 treatments.    His cancer came back 3 months after being declared NED.  It was in his small intestines, more surgery, more chemo and many more health issues the past year.  Sadly, he passed away from this horrid disease 3 months ago.  I'm sorry to share that news, but I have been a caretaker on a similar path as you.  My husband was 8 years older than me.  I have worked full time for 34 years and thankfully had a good job to come back to after I took FMLA absence for about 2 months. 

My husband had that rage soon after starting the Folfox cocktail.  I think it was the steroids, which were adjusted quite often since he tolerated the chemo pretty well with no nausea issues.  He also was not much of a talker.  I was just as scared as he was, maybe more so, maybe less.  He did not have many male friends and did not want to be known as a cancer patient so he tended to keep a very small circle of people around him.  That meant this small circle had to take "the good, the bad and the ugly"  I kept my cool and tried to cry in private.  It upset him more to see me upset, I'm crying right now just thinking about it.  It's funny how our roles totally reversed when we entered "cancerville".  He was always the optimist and I the pessimist.  I had to be optimistic, it was the only way I could get by day to day.  Even though my husband always wanted me to go to work (he was worried I was missing too much time) he liked having me right next to him, whether he was napping, watching TV or reading.  I enjoyed that time, too.

I'm mostly just sad now for all the needless suffering he and so many on this board go through.  I admire the fighters, cheer them on when I can, and mourn with others like me. 

This is a good place to come to vent, ask for advice, or share good and bad news.  You will likely find others you can relate to on this board as I did.  BTW, we were both on anti-depressants, something he swore he would never take.  I have even more prescriptions now to help me sleep and grieve and still function.  I don't mind asking for help and you shouldn't either.  His oncologist may be able to refer you to a caregivers group you can attend.  I go to a bereavement group once a week and I have found it SO helpful. 

Linda

Meowycat said:

Dear Amy,I right to you with

Dear Amy,

I write to you with all the love in my broken heart. I lost my mother the first of this year to metastatic colon cancer (stage 4 with mets to bone and lung). My father and I were her caretakers over the past three years. So what I want to say to you is that:

1. You are a beautiful person inside and out. Caregiving is both grueling and rewarding at certain times. Although all you will see at this point is sleep deprivation, emotional strife, and feeling not appreciated.

2. FOLFOX and Avastin were grueling for my mom. She was always mild mannered, tried not to complain. But the amount of different pain, side effects (sleeplessnes;sleeping, fidgeting, mouth sores, itching, headaches, etc) were brutal on her. She was weak, not hungry, light sensititve, hearing sensitive, etc. We tried to be as considerate as we could. But she would get snappy if I made too much noise. It's the combo of the drugs and emotionally how it affects them. Evey patient deals with their disease differently. Some people cry more, some people get more testy. But if your feelings are getting hurt all the time or someone is yelling at the caregiver a lot then the onc should be involved.

3. "Jangled nerves", crying, feeling like your life may be passing you by (that you have sacrificed for someone you love) is all normal. I would feel bad for feeling that way, then feel bad because I snapped at her, then feel bad for snapping-it's a vicious mindbleep. Your feelings will get hurt. You may hurt his feelings. My mom sometimes would say things that were not like her and not remember she said them. I chucked it up to the chemo combos.

4. My mother was a "loner" all her life. During the last year my friends not wanting to leave me in a sea of despair started coming by the house and bringing some much needed different energy. It broke up the monotony of the day and helped everyone feel slightly better emotionally. Not everyone is lucky in this respect. Just like you are doiing this alone. I at least had my Dad. So you get big points in my book.

5.You should speak with the onc. to see if he can receive some type of palliative care-an aide a few hours, volunteers to come by the house, a non denominational spiritual advisor. They do help. The aide even for two or three hours let my Dad and me run and do errands or just sit down and have a decent meal without our nerves being shot.

6. I resigned from my job to stay home for a year to take care of my mom because my Dad just could not physically and emotionally handle it at his age. And he was so good and never complained. I will tell you it was the best decision I ever made for me. It is not for everyone. It is very hard emotionally and physically. You feel isolated from society at times and as if you are a shell of yourself. But when my mom would say she felt safe when I was there or that when I was being stern and pushy it was because she knew I cared that meant the world to me. In my situation I feel I have no regrets.

7. Don't be hard on yourself (easier said than done). Remember you are you and you are ok and again you are beautiful.

Big Huggies and Hang in there,

Meowycat

 

she is my only sibling.  She has teenage children and fighting the battle of her life.  I have been reading your comments and have found so much comfort.  In fact, I have shared many with my sister and she has found comfort as well. So gratefu!