What do you do when the support disappears?

katgrace
katgrace Member Posts: 5
in Caregivers #1
My boyfriend was diagnosed with testicular cancer in July 2011. Since then he has had two surgeries and started chemo a week ago. In the beginning we had a rush of support from friends and family, people asking how they could help. I was fine for a while. I am a full time grad student, work full time, and take care of my boyfriend. It seems that the support is gone now because people seem to have tired of the story or just forgot they offered to help. I am finding that I really need to deal with emotions that I never had time to address and the friends that said they would do whatever we needed to help are no where to be found. I'm feeling sad, scared, overwhelmed and no one answers their phone. I know as a caregiver I am supposed to take care of myself. I am trying to do that but the only person who has the time to listen is my boyfriend who has enough to worry about already. My job is being weird about taking time off because he is "only a boyfriend" and while professors say they are willing to help, when it comes down to it they really don't mean it. I'm feeling alone. I don't have time for a physical support group right now and with no friends available to listen I thought this might be a good way to get support.

Comments

  • ketziah35
    ketziah35 Member Posts: 1,145
    #2
    Hire it or look for it in
    Hire it or look for it in non profit organizations. It ois more dependable of you hire people.
  • northa914
    northa914 Member Posts: 100
    #3
    Support
    So sorry that you feel so alone! I’m sure you’re friends do mean well, but perhaps don't know what to think or how to feel about a cancer diagnosis. And as a caregiver, you absolutely should not feel that you have to take care of yourself! You have an incredible burden that you have taken on for someone you love, and you too need help and support. Have you talked to your boyfriend's oncologist? Perhaps he can refer you to some organizations in your area that can come volunteer to help you care for your boyfriend and/or offer you the support you need. Also look into hospice care if your boyfriend needs more assistance than you are able to provide. Hospice care isn't only for end-of-life situations. It's also for people who need assistance with treatments and for debilitating side effects. I'm not a caregiver, I'm the one battling the disease (stage IV cholangiocarcinoma). I'm fortunate that I have the support of amazing family, friends, and medical professionals. I'm also fortunate that the disease and the treatment I'm undergoing have not prevented me from living life on a daily basis. I'm a single mother with two boys ages 13 and 10 who need me to provide as normal of a life for them as possible and am so blessed to be able to do that. Should that change, I would never want my caregivers to feel alone and abandoned! I usually don't post on the caregivers site, but decided to take a look as I was concerned about a post that had gone unanswered by a caregiver looking for support on the liver cancer board (I was hoping that she had also posted on the caregivers board and was receiving responses, which thankfully she is!). Please let us know how you're doing, there’s a lot of people here that really do care!
  • grandmafay
    grandmafay Member Posts: 1,633 Member
    #4
    Welcome
    I am sorry you are going throug this but glad you found us. Caregiving iis the hardest thing I have ever done. My husband fought cancer for six years before losing his battle. We were both retired and have grown children, so I didn't have to juggle as many things as most. Even then, I was worn out much of the time. You need help. Don't try to do this on your own. I found that people around us responded best to specific requests for help. You might want to try telling those who offered to help in the past that you need them to sit with your boyfriend for an hour, or pick up groceries, or whatever. If that doesn't work, check with his oncologist, the American Cancer Society, the hospital social worker, or social services. See what services are available. If you can, make time for a support group. This virtual one is wonderful, but sometimes virtual hugs just aren't enough. My husband and I attended a cancer support group together. Now, a little over two years since his death, I still go. The friendships we formed have helped me, and I hope I am helping others by giving back some support. You are right that you do need to take care of yourself. You can't help him if you can't help yourself. Set aside some me time. Remember, it is ok to have fun, too. Ask your professors to help you make a plan you can live with for your studies. In the end, you will do what you need to do. Somehow, we do find the strength. Just don't try to be too strong. Do the best you can at the time, that is all anyone can do. Fay
  • jimwins
    jimwins Member Posts: 2,107
    #5
    You can't be a superhero :)
    Welcome to this site! Sorry you have to be here but you'll find a
    wealth of care and support here.

    Have you asked these people for help or "reminded" them?
    I don't know how you're doing everything you're doing and getting
    any rest - I assume you're fairly young :).

    I agree with what the others have stated. Check with the social
    workers where your boyfriend is being treated. They can probably
    offer some guidance also.

    After re-reading your post (chemo brain here), I see you're referring
    to yourself more. Maybe you're trying to do too much and need to give yourself
    a break? You're human and can't turn into a "super hero" under these
    circumstances.

    You are welcome here always. You can vent, rave, rant, scream, cry, and
    laugh (we do laugh) without judgement.

    Big hugs,

    Jim
  • palmyrafan
    palmyrafan Member Posts: 396
    #6
    Support
    I agree with the others. You DO need to take care of yourself. I am the cancer patient (brain) and my husband is my caregiver. He holds down a full-time job (with travel), we have an art studio (I help out when I can) and he is my full-time caregiver. Being my caregiver he also: takes me to all my doc appts, tests, exams, etc., we share 50/50 cooking and cleaning chores and he is responsible for all the outdoor maintenance that comes with a home. I personally think he should be nominated for sainthood!

    We have been fighting this beast for almost 19 years and we have learned many things. First and foremost: TAKE SOME TIME FOR YOURSELF. You can't be a superhero or wonder woman. You will collapse, get sick or just fall apart. Not good for either of you. It is possible to be a great caregiver and still take time for yourself without feeling like you are letting the patient down. When your partner is napping, go for a walk, take some pictures, meet a girlfriend for coffee or do some work you ened to catch up on. Rein in those friends, family and/or colleagues who have offered their help. Call them up and say "hey, I've got to work late or I have a meeting, could you please check on _______ either by calling them or stopping in"? It puts the well-meaning people in a position of having to give you an answer, without pressure. My husband notifies all our neighbors (we have great friends and neighbors) when he has to travel out of town. I have all their phone # on the fridge with standing orders from all of them, "call me if you need ANYTHING!" even though they are all busy with their own lives. I even have a standing invitation from 1 neighbor that I can spend the night at their house in the spare room if I am feeling "off kilter".

    Please don't overdo it. You are important too. Take care of yourself. Get plenty of rest, fluids, down time.

    Hang in there!

    Hugs,
    Teresa
  • jim and i
    jim and i Member Posts: 1,788 Member
    #7
    Support for caregiver is crucial
    My husband has base of tongue cancer and I know how lonely and draining it can be. Get in touch with those who volunteered to help. If they don't answer leave a message, if they don't return your call, they aren't your friend. I know how hard it is to ask for help. I don't do it well myself. One thing I learned when running a non profit orginization was that when you recruit volunteers you have to tell them specificaly what you want them to do and when. They may want to help but not know how.

    I had to quit my job because my husband could not drive and at one point when taking pain meds wandered off naked so couldn't be left alone. I found a lot of comfort and support on the Head and neck site but the best thing was crawling in the bed with my husband and him holding me.

    As for your professor, communicate with him. Ask how you can work out a solution that is acceptable. Ask him to share his expecttions with you and if they are not achievable work out a compromise.

    Keep strong and surround yourself with positive people. I am praying for you and your boyfriend.

    Debbie
  • katgrace
    katgrace Member Posts: 5
    #8
    jim and i said:

    Support for caregiver is crucial
    My husband has base of tongue cancer and I know how lonely and draining it can be. Get in touch with those who volunteered to help. If they don't answer leave a message, if they don't return your call, they aren't your friend. I know how hard it is to ask for help. I don't do it well myself. One thing I learned when running a non profit orginization was that when you recruit volunteers you have to tell them specificaly what you want them to do and when. They may want to help but not know how.

    I had to quit my job because my husband could not drive and at one point when taking pain meds wandered off naked so couldn't be left alone. I found a lot of comfort and support on the Head and neck site but the best thing was crawling in the bed with my husband and him holding me.

    As for your professor, communicate with him. Ask how you can work out a solution that is acceptable. Ask him to share his expecttions with you and if they are not achievable work out a compromise.

    Keep strong and surround yourself with positive people. I am praying for you and your boyfriend.

    Debbie

    Thank You
    I really apreciated all of the support I received. I was hitting a wall and felt incredibly alone. I think sometimes people don't even know you need help if you are someone who normally handles things well. I am usually a strong person and don't require a lot of support but obviously this is not something that will allow me to have that kidn of reaction.

    I decided to pick up the phone again and call people a second time (I had already left the "hey, it's me. Call me when you can" messages). This time I left voicemails with very specific things like "I'm feeling overwhelmed and I need a hug" or "I am really tired and I need help getting things fromt eh grocery store while I finish up my final paper for class". I also spoke with my professor and received an extension (which I didn't need because of the support of friends mentioned prior). While it was a little uncomfortable to ask, giving specifics really helped people understand how exhausted and sad I was and they began responding to my needs.

    I realize that I don't need to be a super hero and taking care of myself is incredibly important. I am no good to my boyfriend if I am worn out and angry/sad. I am so appreciative of the ability to vent here with people who understand what I am going through.
  • jimwins
    jimwins Member Posts: 2,107
    #9
    katgrace said:

    Thank You
    I really apreciated all of the support I received. I was hitting a wall and felt incredibly alone. I think sometimes people don't even know you need help if you are someone who normally handles things well. I am usually a strong person and don't require a lot of support but obviously this is not something that will allow me to have that kidn of reaction.

    I decided to pick up the phone again and call people a second time (I had already left the "hey, it's me. Call me when you can" messages). This time I left voicemails with very specific things like "I'm feeling overwhelmed and I need a hug" or "I am really tired and I need help getting things fromt eh grocery store while I finish up my final paper for class". I also spoke with my professor and received an extension (which I didn't need because of the support of friends mentioned prior). While it was a little uncomfortable to ask, giving specifics really helped people understand how exhausted and sad I was and they began responding to my needs.

    I realize that I don't need to be a super hero and taking care of myself is incredibly important. I am no good to my boyfriend if I am worn out and angry/sad. I am so appreciative of the ability to vent here with people who understand what I am going through.

    You're always welcome here
    Cool!

    I'm glad you're getting some help.

    Hugs and positive thoughts,

    Jim
    DX: DLBL 4/2011, Chemo completed 10/2011, currently in remission. ☺
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  • louceil
    louceil Member Posts: 9
    #10
    katgrace said:

    Thank You
    I really apreciated all of the support I received. I was hitting a wall and felt incredibly alone. I think sometimes people don't even know you need help if you are someone who normally handles things well. I am usually a strong person and don't require a lot of support but obviously this is not something that will allow me to have that kidn of reaction.

    I decided to pick up the phone again and call people a second time (I had already left the "hey, it's me. Call me when you can" messages). This time I left voicemails with very specific things like "I'm feeling overwhelmed and I need a hug" or "I am really tired and I need help getting things fromt eh grocery store while I finish up my final paper for class". I also spoke with my professor and received an extension (which I didn't need because of the support of friends mentioned prior). While it was a little uncomfortable to ask, giving specifics really helped people understand how exhausted and sad I was and they began responding to my needs.

    I realize that I don't need to be a super hero and taking care of myself is incredibly important. I am no good to my boyfriend if I am worn out and angry/sad. I am so appreciative of the ability to vent here with people who understand what I am going through.

    A BIG HUG from a Caregiver
    Hi Katgrace!

    I recently joined this site for info and support as well. My husband Louis had SCC of the left tonsil in May 2007 and this past year has experienced various after effects post cancer.

    As a caregiver, I have gone thru a spiral of emotions but have to step back, re-adjust and remember that Louis is going thru a daily struggle that God has blessed me not to have. I was diagnosed with endometrial cancer in December 2006 and was blessed to not have to go thru all a cancer patient does. I had a full hysterectomy in Jan. 2007 and am cancer free. So, we both had cancer the same year.

    Throughout this journey, I had some family and friends that were consistently there and my job was amazing and gave me the flex time to work from home or the hospital to care for Louis, until I got laid off in Oct. 2008. I had been at my job 16 yrs. and am currently unemployed. The next year I lost a brother, sister and my best friend to cancer. That's when the support started slowly drifting away. I pulled the strength out from who knows where (I believe from prayer) and like you starting calling some of those slackers to remind them of their recent offers of help. I could sense a few attitudes but then had to get "ugly" with them. You never think you have to go to that extreme with people when you're going thru such an overwhelming time in your life. Hard times are when you find out who is really loyal and who really cares.

    I also found that as overwhelmed as things were I still found time to keep a journal on my pc. It helped me keep track of Louis' appts., meds, treatments, etc. and was therapy for me in expressing my thoughts too. Some way you have to find time for yourself even if someone sits with your boyfriend allowing you to have ME TIME. You definitely don't want to feel anger or even resentment for taking on such a major role. All of these feelings are normal and expected so don't feel guilty, just find ways to support your needs too. It will truly make for a good recovery for your boyfriend too.

    Like Jimwins said, this is a great way to rant, rave, cry and laugh. Other suggestions here and finding a Cancer support group near home will be helpful. It was for me.

    TOUGH TIMES WON'T LAST LONG, TOUGH PEOPLE DO!!!!

    You and your boyfriend will be in my prayers. Stay strong, Stay hopeful and Don't let anyone or anything take your Joy away.


    God's blessings to both of you,
    Louceil

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