Caregiving for my husband who has terminal cancer

[maxie0628]

Hello Everyone,

Newcomer here. First time posting. My husband was diagnosed with kidney cancer in December 2016. He was stage 3 and for about a year we were okay. The cancer came back with a vengeance in December of 2017. Life suddenly stopped. It's stage 4 and it's attacking his bones and lungs. He's in treatment and so far he's stable. The side effects are terrible and I've watched him deteriorate. In January he was walking, eating, able to care for himself. It's now July and he can only walk short distances with the help of a walker, barely eats, and can no longer be alone. This disease has robbed him of his independence and the lively spirit that he once had. I'm his primary caregiver and the one that people constantly ask about his status. Everyone wants to see progression and hear positive news and I don't always have it. I try to stay as positive and optimistic as I can, but i find myself crying alone, praying out loud in my car, angry at times, desperate at other times, irritated, a sobbing mess, and finally coming to accept what is happening to us and realizing that I need to make the best use of our time. I wouldn't wish this life on anyone. I miss our old life so much. Sometimes I'll dream about us walking, holding hands, and doing the things we loved...just to wake up and realize it's just a dream...not real. I'm grieving our old lives and it's hard. I don't share these feelings with him...I don't want him to feel bad or to burden my friends and family with my depressing thoughts. I feel very alone. I have so much fear right now. On the outside I seem brave and strong, but inside I'm fearful and anxious. I'm scared of losing him, scared of what will happen to me, where will I go? What will I do? We are fairly young...will I be alone now forever? The thought of finding someone new seems unfathomable because to me no one could ever come close to him. Right now I'm just doing the best I can...and trying to be the rock he needs me to be, but I know he's fading and I'm scared. I just needed to get it out...thanks for reading.

[Nicole-my grief journey]

Dear Maxie0628,

I find it so hard to find words at the moment. I’m so sorry and sad that this is happening to you and him. You are an amazing, strong human being. The love you are giving and share with each other is so apparent in your post. 

Everything you’ve written from “watched him deteriorate”, down to your last words are the exact way I feel with what’s happening to my mom and I right now. The feelings, the questions, the emotions, stress, futurizing...all of it. I feel it too, just in a slightly different scenario.

My mom is stage IV colon cancer, with metasis to liver, peritoneal and lungs. I am losing her and there is nothing I can do to stop it. It’s excruciating. I’m her caregiver and I’m so heartbroken to see my mom suffering. I too am anxiety ridden, fearful, scared, alone and wish this was just a nightmare and that we could wake up from it. I am strong in front of her and crumbling inside. I am doing my best to focus on making her comfortable and suffer less, but something new happens every day and it’s an impossible situation. Every day is scary. I feel people want me to lie and comfort them about what’s happening and it makes it harder on me. I tell them I need help and people say they will and then do nothing. Except to cause me further stress by checking in intermittently to question things that they have no idea about and then offer their suggestions (as if I haven’t already thought something out, or searched for the solution to whatever was in question). It feels like they expect me to be able to keep her alive and well and give them updates while I’m actually buried in the suffering along with her. She is my heart and my whole world. They don’t understand every waking moment that I have, I need to be able to be with her, advocate for her and focus on interpreting all the medical things that are in front of me. All of that while having no one to talk to about the fact that...I’m LOSING MY MOTHER! That’s what I want to shout at them. I know it’s not anyones fault and I’m under intense stress and that they want to know because they love her...but I have to say that to vent. Because too, it’s baffling to me that people just don’t get it. Her time is limited on this earth and she/we...need help.

 I just want you to know there are those of us out here and on this forum that share in what you’ve expressed so well. I was doing ok in the beginning, but now that every day it becomes more apparent that my time with her is limited...I have been unable to control my emotions. I don’t do it in front of her. I come home and curl up and cry and feel like I’m falling apart. Feeling like how will I live without her and how will I go on...most of all though, I hate seeing her suffer and going through this horrible disease that’s robbing her of everything. She is the sweetest, kindest, most gentle, loving person I know and does not deserve this.

Thanks for reading. Sorry to let it out under your post, but again just wanted to let you know that I feel all of it too. Watching her not be able to eat, not wanting to eat, using walker, meds being administered, sleeping a lot and a shell of her former self. 

Sending you love, thoughts and prayers. May both of us make the moments we have left with our loved ones continue to count. May we and they find peace in whatever way is possible. And be able to drown out the extra noise that surrounds situations like ours that makes it harder to cope. 

Lots of love,

Nicole

[JUJUNEWS]

Wow Maxie!  Reading your words about your emotions dealing with your husband's terminal cancer was like you were looking into my mind and saying the words I was thinking.  I have felt so alone through this ordeal and journey and it's nice to know that someone else understands.  It kind of takes the sting of the loneliness away.  Since April 2, of this year my husband has been diagnosed with stage 4 lung and stage 4 brain cancer so I'm still trying to process the emotions of learning my husband has a terminal disease while at the same time learning how to deal with the role reversals he and I have had to go through.  Our families and friends all say they understand but how can they?  They go home while I'm in it 24/7.  I'm still holding down a full time job on night shift as a 911 dispatcher which is hard enough but my days are filled with doctor appointments, treatments, drug stores visits, daily tasks of keeping up a household, and trying to be a compassionate wife.  I'm loosing my husband to this horrible disease.  We use to sing together, dance, laugh, talk for hours but now our time is spent talking about meds, trying to get him to eat, watching him sleep and counting his breaths due to the heavy narcotics, watching him decline daily and wondering how we got to this point.  I'm so glad I found this forum I feel like it's going to help me deal with the ordeal I now call my life.  

[adenham29]

Hi Maxie. I'm new here too. My husband was recently diagnosed with stage 4 colon cancer. I'm just beginning this process. I already feel similar to what you described. I feel alone and that is why I'm trying the online support. I'm here if you need to talk.