Caregivers

[Scaredoutofmind]

How do you all do it? We're 9 months in since we found out DH has stage IV cc. We've been thru a colonostomy, treatments, hospital stays. Most recently DH had surgery to correct retracted stoma and now has an ilesostomy. It's been 4 weeks since surgery and this is the hardest recovery yet. Two weeks post surgery DH was back in hospital with ileus, been back home for 2 weeks but having issues with gas. Surgeon and onco cleared him to start treatment again in a week. I'm scared to death, he is barely eating and hydrating now, I'm afraid when he starts treatment we will be back in ER.

We have a 3 1/2 year old and 2 dogs. I'm my husbands biggest advocate and doing everything in my power to keep him positive and strong to fight for himself and our family.

I get frustrated when I'm constantly checking on the amount of fluids he is/isn't drinking and what he is/isn't eating. I'm trying my best to help him get his strength back.

I have my "game face" on all the time to make my daughters life as normal as possible and I don't want everyone to see what a mess I am. If I didn't do this, I'd be a complete mess. I cry all the time when I'm alone, I'm so afraid.

Am I the only one who feels this way? I feel awful for getting frustrated and don't know what else to do.

[jortego128]

You are not alone. There are few days that I dont shed a tear in fear of losing my dear mom. It is frustrating when she doesnt eat or drink enough, seems too tired to get out of bed, etc, but she is dealing with a very real, devastating disease, as is your husband. We have to remember that when dealing with our loved ones. I love my mom as much as life itself.

Try to have patience with your DH and provide encouragement as best you can. Dont let your feelings get hurt if you ever get snapped at-- its not about you, remember that. It means a lot to our loved ones (and to us caregivers) for us to love and support them in every way we can.

[jhocno197]

Being a caregiver is so hard.
I get incredibly frustrated with my husband when he won't drink enough, or take his meds right; I try not to get annoyed, but sometimes it doesn't work.
I do have help, b/c we have two 'old' kids, who can help with the 3 littles, but I try very hard to not let them see me be upset about my husband - I want them to be able to be kids as long as they can - they know he has cancer, but not yet that he's not likely to survive it.
Sometimes I just want to hide away somewhere...guess it's best that I can't...
I'm sorry y'all are in this crappy situation, too.

[Sams wife]

We are here. Was gonna post here but I'd rather not post my silly problems on your post. My next post will be " any caretakers falling apart".

Do you know if chemo will be lighter or anything? I was worried about hubby starting & dr had told us it wouldn't be that bad since radiation was done. They lowered chemo & started it after (right after) an infection & he done pretty good. I was scared tho. & yes, I have to watch his meds. I need a job, scared to leave him by his self. He won't eat good AT all.
I don't know what to do. but yes. We are here I'm sure!

If not here. There are some women on caregivers of stage IV that I'm sure will answer you. They may not be going thru it now but they will answer.

[JDinNC]

I'm not going to give you my story but I do want to stress that you need to take care of yourself. I'm the one with stage 4 but I had spent 13 years being my mother caregiver. I was still working a full time job and would stop by to check on her everyday after work. I thought I was handling it all well but learn years later that a caregiver is under so much stress that they usually develop health issues. Two years after my mother died I was diagnosed with cancer...I'm not saying what caused it but I am saying that I never followed up on my own care because my focus was always on my mother. So please take care of yourself.

I will suggest not pushing your husband to eat. Surgery really destroy ones appetite, I lose 40 lbs from chemo and I wasn't overweight to begin with. I found that boost or ensure helped me a lot for my minerals and protein. If it means giving him a half of a sandwich 4 times a day at least he's eating. Think small steps until his appetite kicks back in. I was always a water drinker but I had no desire to get my fluids. Just watch his blood pressure...I became so fatigue I couldn't stand so I landed at the ER...my blood pressure was through the roof.

As for being frustrated...I found while driving alone I would have conversations with myself, It helped release all my bottled up anger. I got alot off my chest within involving the person I was upset with.

Jan

[stu]

Hi.
Last night I was thinking about my own health. My mum has been a stage 4 patient for 6 1/2 years( the half counts ). My dad has a stroke for the same period of time. The first year was the worst and gradually you develop ways to cope. Just to give you hope the last four years have been fantastic for us all
But I totally agree having a chat with my GP was great and I used beta blockers the first year. Now I walk. Sometimes in circles but it helps so much.
Take care
Stu

[momof3]

I will agree with Stu that it does get a little easier as time goes on, but the stress has not gone away for me.

My husband was diagnosed stage 4, over 3 years ago. I feel I am mostly just exhausted all the time. Mentally and physically. We have 2 teens and our youngest is 4. I too try to keep their lives as normal as possible, but truth is they are far from normal. The teens obviously know the difference, sadly the little guy has known nothing else. I was just thinking about how he has never had a good holiday season. The year he was born, my MIL died in November, the next year my husband was diagnosed in August, the following my husband had a recurrence and was in the hospital from mid Nov to 4 days before Christmas, last year my mom died in September. We need to make the most of this season!

Like you I've taken to "mothering" my husband and it does get frustrating. I try to back off when he is doing well and let him do more and more for himself. Otherwise I know I would end up blowing up at him. I also get frustrated when I don't feel he is doing all he could or should in self advocacy, but I just remind myself that ultimately it is his life and he needs to take some responsibility for how things go. My husband is happy to let me deal with all of the doctor stuff, etc - he just does not want to think about it. I get that, but I also get annoyed and push him to take some of the doctor stuff on too. Especially since I don't particularly care for or agree with his doctor and he's not willing to change.

Is your husband on an anti-depressant? If not, see if you can convince him to try something. I found that helped my husband. I'm sure yours if feeling depressed about the last few months - very much understandable.

I have gained probably 25 lbs since his diagnosis. I am tired all the time, I lost my job due to caring for him and then my mom. I wish I could tell you things will get better. My advice to you, find time for fun things (as a family and alone), try to remember there are long term stage 4 survivors...this is your new life. Try to find a way to deal with it. Get out with friends, start a hobby, write it out, talk to a therapist if it would be helpful. Keep posting here...we get it. I'm thinking of taking up drinking...haha...sorta kidding...

[Jacques]

If you like to read books, there's an e-book written by a colon-cancer caregiver. It covers a variety of subjects relevant to caregiving.
For example, Chapter 25 is entitled “The Hidden Burden of Being a Caregiver”.

The book was written by one of our members here on Colon Club

Shedding Light on the Cancer Journey: Navigating the Colon Cancer Maze
http://www.amazon.com/Shedding-Light-Cancer-Journey-Navigating-ebook/dp/B004T3331M

[stu]

Hi momof3,
That is such a lot for you to hold together. Totally understandable that you feel the strain. How could you not. We have been very fortunate that my mum has long periods without treatment and she has only ever had twelve cycles of chemo in total so her quality of life remains high in between. Europe generally has a different protocol for chemo for life and I think that has helped. She does take surgery where possible.
I think its great you shared some ideas for coping as that really helped our family in the early days when you feel its a toe by toe journey.
Thinking of you all.
Stu

[bitchslapped]

First of all, have you considered creating a signature so members can see your situation @ a glance?

viewtopic.php?f=1&t=52681&p=414489


If you check mine, you will see I took care of both my DM & DH @ home w/me in addition to our home-based business. It was a living nightmare. I'll leave out any expletives. I had a BFF for moral support which helped immensely #1), though not a lot of time for phone conversations. #2) I always challenged myself to be more efficient. I had to w/two of them. For instance, if measuring fluid intake throughout the day for your DH is a source of stress for you, try filling a thermal pitcher w/water/Gatorade, etc & a glass set near where he spends most of his time when he's home. Check it midday & refill as necessary. I used one from the hospital which holds 6 cups. Also consider supplementing his diet w/Boost or Ensure or some other protein supplement. Toss in a scoop of his favorite ice cream or fruit if you have to if he doesn't care for the taste. One problem I had was it filled my DH up so much that he then wasn't hungry @ all for further meals, so maybe use 1/2. #3) Try to avoid the "poor me's". It's not about you, really & will not help you @ all. One way to do this is if you are a Believer, you can accept that God put you in your DH's path because He knew this man would need you in his life. That also there may be things you need to learn, experience that will help you in your own life one day. Just sayin. We pull our strength from where we pull it. Or you just somehow come to terms w/the fact that this is your reality & take it as it comes. I have no answers on how to do this. Some of us are better @ focusing on the here & now.

I couldn't cry, but if I had a 3 yr old, I might have. It's tough, very, very tough. If you do anything for yourself, see that you get enough sleep to meet the challenges. I could tell you to eat right, get exercise, time for yourself, yadda, yadda, yadda. Of course those are important, however some of those things can become luxuries. Find what is the biggest burden of maintaining your household, what would bring you the biggest relief & hire it done to preserve some of your energy. Depending on the budget that may be once or twice a month. If it's just hiring a babysitter to have lunch w/your BFF, do it. If it's bringing someone in to clean house or mow the lawn occasionally, do it.

You can do this. Why? Because you have to. But it won't be easy. Ultimately your DH makes his own choices, as is his right. The only thing you can do is try to encourage him, then let go of it. He is not a child. You have many other things to do.
Very good input from everyone's posts. We all are afraid of the unknown. We just plow ahead best we can. You are struggling w/it because it IS a tremendous struggle.

Best Wishes
bitchslapped

[Sams wife]

Ultimately your DH makes his own choices, as is his right. The only thing you can do is try to encourage him, then let go of it. He is not a child. You have many other things to do.
Very good input from everyone's posts. We all are afraid of the unknown. We just plow ahead best we can. You are struggling w/it because it IS a tremendous struggle.

Best Wishes
bitchslapped

This is finally sinking into my thick head. It only took a year : )
Except one time when he had thrush & couldn't eat, I should have made people listen sooner. But he really didn't have control over that so it wasn't really about him.

[Scaredoutofmind]

Thanks everyone for your input. It's been a hell of a week since I posted. DH had scans on Monday and we received results today, turns out he has a small bowel blockage. Of course, I freaked and contacted his surgeon right away thinking we need to go to ER. His surgeon said as long as he isn't vomitting, ab pain, and has normal output then lets just monitor.
Of course that explains why he was barely eating and I felt awful. He has been doing better this week at eating very small meals or grazing/snacking. Still working on hydration, some days are better than others.
Ugh will this worrying ever stop? I pray his obstruction clears itself quickly.

Oh and I finally flipped on mother n law last night when DH was taking to her. She never listens to anything he says and is constantly putting her 2 sense in (which is one thing if she knew what she was talking about) but in her case she is nuts and has no idea what she is saying. My poor hubby was so upset bc she wouldn't listen and kept talking. I couldn't bite my tongue anymore and lost it. I apologized to DH. He wasn't even upset. He was super annoyed with her too, they don't even have a great relationship but since he was diagnosed she has tried to come back in his life.

[MissMolly]

I have a father with colon cancer and follow this forum to better support him. But I also have a permanent ileostomy (unrelated to cancer) and have had my share of small bowel obstructions (SBOs). Some have resolved on their own and some have required hospitalization + an NG tube.

Think of a partial small bowel obstruction as a garden hose with a slight kink. The principle cause of SBO is a tethering of scar tissue (adhesions). Until the intestinal kink resolves, keep his diet very simple. It should be principally liquid-based - chicken or vegetable broth, strained creamed soups, popsicles, fruit juices.

Grape juice is a good hydration choice for resolving SBOs. The flavanoids in grape juice help keep the GI tract moving. Make sure that it is 100% grape juice (not a juice blend or a juice concentrate). It can be either white or concord grape 100% grape juice.

Hot showers/baths, warm compress to the abdomen (ex. a warm buckwheat pack), encourage walking, stretching of shoulder/pelvic girdle (ex. simple yoga poses) to stretch and mobilize the intestines are also helpful to resolve SBOs.

Best to the both of you.

[AngelaN]

As we speak I have just spent my 4th night in the hospital with my DH. He is depressed and discouraged. Just had RFA for his last 3 mets that we can find and then he gets readmitted. I slept two nights in a chair, the second night in a folding chair in the ED. The third night I slept on the floor. They got me a cot for last night. I am tired from not sleeping, worried because I am concerned he now has underlying pulmonary disease , probably a side effect of irinotecan. I have a great job which I really love, got my second promotion in 2 years and use it as my only escape. I have very supportive friends, who I have cancelled on more times than I can count because something comes up and now I am afraid to make plans. My mother has given up her life at the drop of a hat every time I need her. My mother in law is a disaster but that's a different topic for a different day.
My DH lashes out at me because he is sick and tired of being sick and tired. I know this. I just want my life back and more importantly my husband back. We had such a great few months anticipating frying the last 3 mets left.
So...enough pity party. I am very lucky. It's been two years since his stage 4 diagnosis with 9 liver mets and 7 lung mets. Now we have none. We can afford cancer treatment, living in our house and over $35000 it's cost us out of pocket. I have a job I love. My husband and I have a great relationship despite the shit that cancer brought with it.
I'll be blunt. Being a caregiver sucks. But I think everyday if my husband and I were not together he would be dead by now. He is a wonderful man, a great husband and an inspiration to everyone who knows him. And I would do it all over again. I do not regret one second of what I am doing for us.
Find time to do something you love. Find time to laugh together and make memories. Find time to just be together. Go to counseling if you need it (I am contemplating it...two years is a long time to do this.). And use this board. Those of us who are caregivers can help. Feel free to PM me anytime. Angie

[Nick]

Being frustrated is normal. In fact, ANY way you feel at any time is normal, since it's you. And it's ok to be frustrated, or mad, or sad. You need to feel whatever and do whatever you need to handle things. And I know it's hard, since you have no time, but try to make a little time for yourself, maybe a walk around the block, maybe just 10 minutes where you try to leave it behind. (It's like when people say to eat right, and exercise, and attend the support groups, and stay in touch with friends, who's got time for that?)

I used to wish I was the one with cancer, since I felt so useless as a caregiver. But it wasn't useless at all. Looking back it was a privilege to care for Angie - but I was so torn up on the inside I couldn't see that.

And if you have a friend, a church, somebody, something, to share with, do it. Lean on them, vent on them, talk to them. They want to help - they just don't know how. Share with them how.