Need to vent
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Ditto Charlene.! I want my Dad….he could fix anything, but I too will settle for all of you as your support has been most helpful during this horrible year.
PatriceI thank you all!!! I think the constant need to be strong and capable is the most exhausting. If I show any fear or uncertanty (sp) John has a really bad day. We have been fighting this battle since 2005 and frankly I’m tired.
I love John with all my heart and I pray every night for him and all of you, have done everything I could find to do medically and now we just have to wait. I watched my Mother pass from cancer and every time I think of her pain and not knowing me at times, seeing things at times I just break down and cry.
Yesterday morning John said i was talking in my sleep. He said usually i have nightmares, which is true, but this time I said yes Mom.
It shocked me so much I just broke down and cried. I didn’t remember my dream which made me so very sad because I miss and need her so much now. I want to curl up on her lap and have her tell me it’ll be OK. I guess we all want our Mom in times like this.
Well I’ve decided you all will be my Mom! I can come to you for comfort and advice. I want to tell you all, even though we have never met, I have great love for each and everyone of you.
May God HEAL us all. Let that be our prayer everyday, I know it is mine.
Thank you all for being there,
CharleneHi Charlene,
I am also a caregiver – otherwise known as a co-survivor and I really think that is true. I go to a support group for patients and cargivers with metastatic disease. It is at Wellness House in Burr Ridge and is totally free – sopported by grants. Joe went with me the first time but didn’t think he needed it. I have continued to go. They meet once a week and I have learned a lot from listening to others and how they are batttling cancer,. Of course no one else has cc but they are all stage 4 of something.
I also get frustated when Joe gets a queasy stomach and I ask him if he has taken anything and he says no. I think sometimes they just want some sympathy. I pray everyday for compassion and strength. I am a nurse so I am aware of what can happen and I also went into this profession because I like caring for people but when it is day after day for 20 months (even tho he wasn’t really sick until last two months) it is draining. I had a week in Boniare when he went home and I stayed there hoping he would come back. The break from the everyday presence of watching what the disease was doing was helpful but then I felt guilty because I wasn’t with him when he was so sick. I just have to give it over to God each day and start fresh. I am so glad for this website and for the caregivers who are honest. Even my kids are saying we kind of got in denial because he did so well for so long. We have a daughter who is almost 40 and Joe’s fondest wish is to walk her down the aisle. She has the man she wants to marry but he isn’t quite ready yet. I don’t want her to feel pressured to rush this so Joe will be around. We just don’t know what is coming up. He is just about to start conventional chemo for the first time in a few weeks when his bilirubin comes down a little more. Scary times. I don’t know how people cope without a God to go to. Thanks for all your support and Charlene, hang in there. Each day is different and maybe tomorrow will bring you some encouragement and grace to get through the day. God Bless Mary AnneWe are all in this bucket together and as bad as it is I am so glad to have all of you to talk things over with…vent….whatever you call it so that I don’t get mean with Dave when he is being stubborn or when I feel as if I am just going to scream if I have to do one more thing by myself. It has been a year since Dave’s diagnosis but he has been sick for about 1.5 years and I too feel as though I have aged many years. Hang in there everybody….what other choice do we have. I am mostly thankful that I am able to do what I do to help Dave.
Patrice
fairydrop wrote:I don’t blame John all the time, I think it’s only when he won’t do what the Drs. have told him to do.
When he gets nauseaus (sp) and I tell him to take the compazine for it and he waits and waits and complains about being sick. It is so frustrating when he can fix the problem and he won’t.I think I am your John! I often dont take the pain pills I am supposed to or do some other such nonsense. I then start complaining and Hans says (in a very dry voice) “You dont get martyr points if there is a solution to the problem” That quickly puts me in my place.
For me, perhaps for John also, it is 98% stubborness, 2% forgetfulness-not stubborness in the overall meaning but just not wanting or believing you NEED them, that your life has changed so much, or that THIS is your future so you say no thanks, no pills today for me. Not logical, I know but hopefully understandable?
Hang in there Charlene. John appreciates all that you do for him even if he is unwilling to do things for himself. Denial is a wonderful place to be, but it sure makes it harder for everyone else.
Kris
Thank God I’m not the only one with these feelings! I had such guilt about what I was thinking. I don’t blame John all the time, I think it’s only when he won’t do what the Drs. have told him to do.
When he gets nauseaus (sp) and I tell him to take the compazine for it and he waits and waits and complains about being sick. It is so frustrating when he can fix the problem and he won’t.
Sometimes I think he’s not all there mentally and wonder if it has mets to his brain, but then he’ll be just fine and do what he’s supposed to on other days.
I’m just so tired all the time. The fear and anxiety for John is just eating me up. I know he’s going to die but I want it to be as easy as possible for him.
He doesn’t want me to work but I have to, believe me if I could stay home I would.
It’s just so hard. I wish I had a very weak mind so I could lose it lol. Go to my special place and live there forever.
God bless you all for being here with me. I need each and everyone of you to help me get through this.
Thank you all,
CharleneCarol,
Sorry, cant be your therapist. I think you might need someone sane and not someone who danced themselves into morphine 4 hours after surgery!On your daughter, have her fill out the financial aid forms and she might qualify for the federal work study program as well as grants from the university—have her contact the financial aid office. I think she might also want to make a direct appeal to the alumni association. At a university I worked at, the alumni foundation had a “special fund” that wasnt really advertised. The work study program is great because sometimes it is can be more ” professional” jobs if you know what I mean. I did it and worked in a museum for 3 years and pre-Hans and the move to Sweden, I thought I was going to work in museums as my career and work study was truly the most important part of my museum education and I made so many contacts! There is also the possibility of going to local or Tech schools that are far cheaper than universities and colleges and you can transfer the credits to the more expensive schools and not lose too many credits (at least in SC). I did it for several classes and saved my parents loads! I am sure it seems terrible to your daugher, but believe me, she would rather have her father and work for her education than the alternative. See, I can be like your other friends and try to fix everything.
And no one here thinks the carers are whining or complaining. It is part of the situation. And of course everyones response to things differs. Your friends and family are just uncomfortable and dont know what to do or say so they try to over help if you get what I mean. We are all scared of this beast. But our friends and family get uncomfortable not just with the patient, but with the carers as well…if they are close then they understand that things are not only bad with the patient, but because of the emotional and financial stress on the carer as well. Everyone walks on eggshelss with everyone else. Its weird.
Kris
Charlene, I’m so sorry you have to deal with all this. Please don’t be ashamed of your feelings – ever. That is how you feel and they are legitimate feelings of frustration and helplessness. I pray things ease up for you both soon.
Kris, I love your response. Will you be my personal therapist? Just kidding. Hope it’s okay to continue to use this thread as a loving spouse, carer’s need to vent. Well, it’s been almost a year since Charlie was diagnosed. Never have we dealt with anything like this in our lives before. All the other life events and hard times never compared to what we’ve been through this past year. I’ve become Charlie’s #1 advocate. Who woulda’ thought it? Sometimes I feel respect from people that I’ve fought so hard and sort of the feeling – “Who knew Carol was so strong?” Sometimes it’s like fighting an invisible foe – doctors who want to immediately write you off, interminable waits for appts. and treatment, etc. Sometimes the stress is unbearable with the financial worries and insurance problems. Charlie is doing good. I feel like I’ve aged at least 10 years in the last year. We’ve been so blessed with prayers and financial help and I know a lot of people have it so much worse. I don’t want to sound like a whiner. I guess I just need to have a place to say that I’m not undermining everything Charlie or anyone else that has been battling cc, but also that is has truly taken a toll on me. Don’t get me wrong. I’ll never quit fighting for Charlie and our family. I try to shield him some from the bills that can’t be paid and things like that. I take all that on myself. It’s heartbreaking when I had to tell our 19 yr. old daughter that we can’t pay for college anymore. Hopefully, she’ll be able to get financial aid. Then, I have to tell her I’m sorry, we didn’t plan it, that cancer is a life changing event, that we didn’t plan our lives this way either. It’s so hard to talk to even my closest friends or relatives. They either want to hurry up and give me advice or try to fix everything or I feel like I’m imposing – after all it’s been a year and Charlie looks good, so what am I complaining about? Just to be able to say what I want to say and not be judged or interupted…I guess we all want our feelings validated. I’ll stop now. I don’t even know where I’m going with this.
Best wishes to all,
CarolI’m with Charlene. This really sucks.
Personally, my angst has been towards God. My children also receive the brunt of my frustrations.
I’ve been fasting and praying this week for strength and for peace; that God will carry this for me, because the weight is much too heavy. I’m being crushed and have felt as though I am losing my very soul to the anxieties and stress of this disease. It’s not fair that my children need to suffer at my inability to control my tongue. I’ve been at the end of my rope.
I have also been reading old conference talks. Being LDS I have those right in my home, because they come in the Ensign magazine, but they are available to everyone via the internet. There are hundreds of spiritually uplifting talks that give instruction and encouragement to come to Christ.
A talk that helped me yesterday was by Dallin H Oaks titled, “He heals the heavy laden” There’s one by Robert C Oaks titled, “The power of patience” and “The plan of Salvation”, by L Tom Perry. I don’t know how to link, but the talks come up easily on google search engine.
Fasting, praying, reading scriptures and conference talks have been incredibly strengthening and comforting, while everything else has proven to be superficial/temporary. I really have felt a relief, like I am being carried. I wish I had figured this all out months ago……..Ok, I thought I had it figured out. I guess I’ve never needed grace on this large a scale, before.
Anyway, God Bless, loves and hugs, all my prayers, and all that jazz. Charlene, hang in there. This all must work out, somehow. My heart hurts for you along with my own pain at having no control in the direction of this ship. I can only trust that God is steering, and that He is a friendly God who wants the best for us.
Brenda
Charlene,
It doesnt sound self centered, just real. You have been in this for 3 years (if I remember correctly). CC is tiring, exhuasting and frustrating. The medical system is frustrating and can be scary. Insurance is needed in the states and unfortunately it means one more thing to worry about. It isnt fair. The hand you and John have been dealt isnt fair. This was not how you planned on spending your life, and neither was it Johns. Is there a way you can get out of the house for a bit? Dinner with friends or a short trip to see the grandbaby perhaps over the weekend so you wont miss work?Charlene, you need to talk to someone about how you feel. Someone you trust not to judge you but who will listen and understand. We are of course here for you, but you need a hug and that is just not possible here. I HATE CANCER too–who doesnt? Just dont let the hatred of cancer become a hatred of John. I am not sure where you live, but there might be a cancer support group there. If you hear other people talk about their resentment and anger, perhaps you wont feel so guilty about yours. I went to a pychologist in the beginning and it was the most liberating experience as she basically gave me permission to feel whatever I wanted then tried to help me use those emotions in a different way. I think talking to a professional is wonderful, but I also understand that it is not free in the US so there might be financial reasons not to. But if you can afford it, a couple of meetings will really make you feel better.
And Charlene, this part is not a lecture–I promise. But please dont be too hard on John and blaming him for his cancer. There are so few of us that reliable statistics on treatment, life expectancy and even causes is somewhat suspect. And besides, even if drinking increased your chances of getting cc by 20%-that really only means that 800 people in the US would be diagnosed a year. No matter what, CC is really just getting the short end of the stick. You have a better shot at winning money in the lottery. I know that deep down you know this and just need a good vent and CC is so difficult and hard and you have been taking responsibility so long that you need to find a reason, to put blame somewhere and to understand why this is happening to you and John….but sometimes there is no answer, just bad luck.
You have been doing great for so long. It is ok that you need to vent. You can not feel guilty over your feelings. You need all your emotional strength you can find right now, and guilt is just going to zap your strength. Perhaps one of Johns family members can help share the care side abit so you can focus on YOU. Sometimes we all (both carers and patients) need to be who we were before CC. You are still Charlene, not just Johns carer. Go be Charlene for a bit, you deserve it.
Kris
I am at the edge of sanity right now. John is undergoing chemo, I’ve been sick for two weeks and I have to work. I went home sick today and my supervisor called to see if I was going to show up next week!
I’m afraid to call in sick, they might fire me and I provide the insurance for John.
I just want to walk away from my job and can’t. I’m feeling trapped and angry with the whole situation. I’m so tired of being the one to take care of everything. I don’t want to be the one. I’m ashamed because I blame John for getting the cancer, he used to drink heavily and They say that can cause this cancer.
I’m ashamed of my feelings of anger towards him. I HATE CANCER!!!!!
I need some help here. I can’t do this much longer but I can’t quit. I am stuck with no way out. I know How self centered that sounds but I can’t help it.
Charlene
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