Burnt Out

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Burnt Out

by MamaEmt on Mon Jun 11, 2018 05:59 AM

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I am new here. It's been almost 7 years since my husband's diagnosis of Metastatic ColoRectal Cancer. I am tired. I am going to vent, because, if I don't, I will go off on him (it's not his fault) or one of the kids (they don't deserve that). 7 years of on and off chemo. 7 years of slowly losing the guy I fell in in love with. He's 5 freaking years younger than me, for God's sake. Yet, his short term memory is fried. The neuropathy in his feet is so bad, he walks like he is 80. This guy played basketball and tennis before the diagnosis. Now he can barely walk to the entrance of the store. Brad just got out of the hospital after a 3 week stay. He had pneumonia, pain and a bleeding tumor in his small bowel. Treated the pneumonia for 7 days; had surgery to remove the tumor and resect the bowel. The surgeon tells us if he hadn't had the surgery, he would have been in hospice within a week, two max. We call  him the luckiest unlucky guy. He is home now, 30lbs lighter, not really himself. What brought me here, after 7 years of being strong? What pretty much has broke me, is gross. It's shit. Vulgar. I am sorry, but, damn it, having to clean up my 43 yr old husband because he can't make it to the bathroom on time is just wrong. It's unfair . It's not right. It's humiliating for him. 3 weeks in the hospital. Me not working for two weeks (hey, guess what? When you run out of PL, you don't get paid!!) Me driving 30 miles, one way to see him. Sleeping/not sleeping in that God Awful sleep chair that, pardon me, is so NOT conducive to sleeping. Me feeling guilty because I have to go home and take the kids to appointments and pay bills, while he is telling me to come back. And now he can't make it the bathroom and I should just buy stock in the Clorox company, because I have to continually disinfect EVERYTHING. I am angry. BUT, I can't be angry at him, because he didn't do this to himself. I am angry that my kids have been cheated out of a healthy Dad. They are good caregivers to him, too. My poor 14 yr old  son had to help clean him up and  the bathroom up because I had to work. I feel guilty as hell about that. I didn't want to go to work and leave  him with three teens, but I needed to earn a paycheck this week. 

I am not at my wit's end, I don't think. But, God, when do I get to catch a break?

 

RE: Burnt Out

by imyaya on Fri Jun 15, 2018 02:23 PM

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Dear Burnt out-  I have all but stopped posting on this cancer board because of a "troll" that thinks she is an expert and is tooo willing to harshly tell people what to do.  But I have to reply to you because it broke my heart to think somebody else is going thru what I am. I don't have the answers Maam, but I have realized that the cancer doctors do not seem to care about the quality of life the patient and his/her family is left with after and during treatment. They only care about survival. I do not wish my husband dead as I am sure you don't either.And I am sure you would carry the guilt as I would. But when the cancer renders an individual such a low quality of life and slowly destroys the victim and their families why even call that "survival". My heart goes out to you honey.  I have gone thru it and other things for three and half years.  I can't imagine seven.  But I know how time gets away.  Please know that I don't have the answer to anything.  But I am sure the doctors do. I feel it is in their bank account along with the accounts of the pharmacies, hospitals and all else involved.  You have my sympathies. God Bless you and your family. Yaya

RE: Burnt Out

by Mari0512 on Wed Jun 27, 2018 07:03 AM

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Hi Burnt Out, I am astounded and empathetic to hear about your situation. I can't imagine having to be a caregiver to your husband for 7 years and how much it has taken a toll on you and your family.

I'm not sure if you are willing to be open to any advice or support but do you have any family or friends who are helping you and your family out? Have you thought about asking help from the hospital to have a nurse come visit and help you with taking care of your husband? My mom is 48 and I'm a 17 year old daughter who helps her out with her medication. However, my mom does have family members that come to visit her and she has a nurse to visit her tuesdays and fridays at home every week to help her with her treaments. I think it might take some pressure off of you if you have a nurse or some hospital staff to help you and your children.

Take care.

RE: Burnt Out

by caregiver7714 on Thu Jun 28, 2018 11:55 PM

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Hello Burnt Out,

I am responding to you from a hospital in CT, sitting in the reclining chairbed waiting for the sun to set. I too will not sleep well tonight here. As when my husband is home, I never get to sleep through the night. He is stage 4 mRCC for two years now. Prior to that, 10 years Multiple Myeloma. I truely understand when will you get a break. For me, it's when I'm at work or when he falls asleep after I get home and before I retire for the night. He doesn't want an aide and our grown children have moved out to live their lives. Although they come down one day a week(sometimes more)to help around the house. We have taken turns staying overnight at the hospital. But like you, running never seems to end. I just keep going, do whats got to be done. In the end that is my reward to myself, knowing I did all I could. My husband and I havent had a real vacation in more than twelve years. I dream of digging my toes into the sand on a soft, sandy beach. I have no advice to give you only my compassion and hope for strength. Godpeed.

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