• Finding caregiver support

    Asked by Sabrina1982 on Tuesday, February 26, 2013

    Finding caregiver support

    I'm here as a caregiver needing support. I have seen my husband go through cancer 3 times now and from what the doctors have said it's going to be apart of our lives for awhile. I need to find a way to deal with this, my past ways aren't working anymore. I'm at the stage of being angry at the world. Mad at people who get to live a normal life and take in for granted, mad at people who ask me about him only because they think they have to in order to make conversation with me, mad at people who tell me to have faith because it's just that easy, mad at God for putting us through all this........
    I can't think about living a normal life because all I can think about it what the future has in store, which scares the XXX out of me. So I guess I'm wanting to see from other caregivers who or where did the best help/support come from?

    9 Answers from the Community

    9 answers
    • GregP_WN's Avatar

      Hi Sabrina, I have been dx'd 3 times myself. So I am with you and know what you mean when you say mad at the world. I was that way the last time. I was exactly as you said, it was during Christmas time everyone was walking around all happy, happy christmassy and I was maybe going to die. It sucked. I didn't let that phase stay with me long until I got into the fighting mode. Then It passed and I did feel better. I also had to take care of my Mom and Dad, both of whom I lost to cancer. We took care of each of them in Hospice care, that sucked bigtime too.

      The mental part of this deal is a tough one, and can be worse if you let it eat at you. I know you said you are tired of people telling you to be positive and have faith. Well, I agree, that's what you need to do, yes it's hard. I looked at it like this, I can be mad at the world, and make my and my wife's life worse off, or I can just accept it, adjust my attitude, and get on with kicking the XXX out of this cancer, then try to have a normal life. I finally agreed that worrying doesn't do anyone or anything, any good. It just robs you of the peace of today.

      That being said it's hard, very hard. But it's what life has dealt us, so we have to do it.

      Two caregivers on our site are @tatianna and @FreeBird they can give a little more from the perspective of the caregiver.

      I wish you the best, and please ask if you have any questions.

      Greg P
      3x Survivor
      Team WhatNext

      over 3 years ago
    • geekling's Avatar

      There are more patients on the site than caregivers. The site developer, GregP-WN is married and has been through 3 bouts of cancer. Perhaps you could ask to contact his wife?

      I don't think you are "mad" so much as you are jealous of healthy people. I believe you need to do some research to see what it is that you are able to do which can give you more favorable odds. Direct your ire at the cancer, itself, and the problems which cause it. If possible, funnel your anger into proactive methodology to attack the cancer.

      You must think about positive events and futures. It is the only way to formulate a goal. You can do this with your husband. You need to decide what you truly want and then do as best as you are able to get there. Sure there will be bumps and boulders in the road but it is the only way to find your way back to where you are meant to be going.

      Sometimes we must step onto the less traveled road because the well worn path simply isn't working.

      For me, the answer was nutritional changes and a literal breath of fresh air. I discovered I was living in a house which had toxic mold growing behind the walls. I relocated. It cost me a lot both financially and in physical strength but I am here to complain and I am cancer free.

      Best wishes recovered good health ...

      over 3 years ago
    • nancyjac's Avatar

      Check with your local ACS, local churches, or ask at his oncologist's office. There are many organizations that provide a service similar to Mom's Day Out for caretakers and support groups specifically for caretakers. There are also many other options that can help with specific care taker tasks such transportation, meals on wheels, in home care, etc.

      over 3 years ago
    • ticklingcancer's Avatar

      I've said this time and time again on here. I think cancer is harder on the caregiver than it is on the patient. You have to sit back and watch your loved one go through something so horrible. That's no easy task. I think it's ok for you to be mad at all of those you mentioned in your post. I think it's a natural way of dealing with some of your emotions. The important thing is that you talk about your feelings. Like posting on WhatNext. Maybe talking to a Pastor or looking into to counseling. You have to remember that as important as it is for you to be there for your husband, it's equally important that you take time for yourself. Maybe go to the library and read a book. Go get a massage. Have lunch with a friend. You have to get "get away". If not, you'll drive yourself crazy.

      over 3 years ago
    • Peroll's Avatar

      Sabrina, Please look up my wkife who goes by Queen Tatiana here on what next. She has been my care giver for my 8 1/2 year battle and has lots of experience. She has had the same kind of feelings that you are having and can give you some advice about getting through the journey. Most of us cancer patients know how valuable the support of a good caregivers helps and how hard it casn be on the caregiver/ We probably don;t thank you enough for the care and support. Good Luck and let us know how else we can help.

      over 3 years ago
    • AlizaMLS's Avatar

      Dear Sabrina,

      I'm a breast cancer patient and going through this with my fiance (this caused a delay in our wedding). We need a break to get away (we live in NYC) to a nice quiet place where we can figure out a bunch of things and just relax. Back to you. I'm also a trained Medical Librarian and though I don't offer medical advice per se (Librarians don't do that-we offer referrals). The one I'm going to offer you right now is to CancerCare which has support programs through Oncological Social Workers for patients and caregivers like yourself-both my fiance and I are thinking of seeing different social workers through them.

      Wishing you the best of luck!

      over 3 years ago
    • Tracy's Avatar

      I can speak as both a patient and a caregiver. Other people don't know what to say, they want to help but they haven't a clue. How do you tell them that you are exhausted in mind body and soul? Platitudes are not going to help, hugs and finding a way to get out of your own head are the best answers but not easy to find. When going through it with my father and helping my mother through it with her two best friends, walking it out was the best therapy for both of us. Normal is not a part of cancer, day by day is what you live by. Anger is also part of the journey. This is not the same as what you are going through, I know, I hope you can find comfort. Tracy

      over 3 years ago
    • RachaelC@StF's Avatar
      RachaelC@StF Community Outreach Coordinator 317-528-7794

      Hi Sabrina1982,
      I am very sorry to hear that you are having to experience cancer for the third time. That plain sucks. St. Francis partners with a not-for-profit organization called Cancer Support Community. They offer some awesome support groups that keep our patients and caregivers coming back every week, and they are free! I googled the nearest CSC to you, and I'm not sure you would want to drive that far, but I thought I would throw it out there in case. You have two options:
      1. Gilda's Club (CSC's old name) is located in Louisville, KY. The address is 633 Baxter Ave, Louisville, KY. It is an hour drive from Madison.
      2. Cancer Support Community of Greater Cincinnatti and Northern Kentucky is located in Fort Wright, KY. The address is 1717 Dixie Highway. It's an hour and sixteen minute drive from Madison.
      Hopefully these help. Maybe the drive can be some extra time for you to compress and think, especially if it is only once or twice a month. The support groups usually run in the evening from 6:30 to 8 p.m.

      over 3 years ago
    • Queen_Tatiana's Avatar

      Hi Sabrina, My husnad has been battling colon cancer for 8+ years now (Peroll), and has been over the 5% mark at least three times. I have been through every emotion there is and then some since this started. I recently was mad that we were not able to take a cruise we wanted to take over Christmas because chemo started again. Who on earth can you express this kind of anger to, except another caregiver? Yes, everyone asks me how my husband is, and I think it's because they want me to know they know and they don't know what else to say. People look at us as being so strong when I'm not strong a all. Sometimes all I want to to do is sit on a beach somewhere far far away and forget about life for a few weeks, then come back and handle it all over again--I am in one of these times when I'm dreaming of a beach. Please feel free to contact me if you like.

      over 3 years ago

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