• How can I find support for spouse/caregiver (me)? The patient is my husband.

    Asked by DarrellD on Monday, December 9, 2013

    How can I find support for spouse/caregiver (me)? The patient is my husband.

    I am terrified. I just got the skinny on the diagnosis, what follicular lymphoma is and how his age and general health will affect his treatment, etc. We are hoping, since this seems to be early detection, that it is stage one but will not know until Friday when he sees the oncologist, if we even know at that point without further tests. Trying to live a normal life until then is difficult. We are senior citizens but not THAT senior. We are also not religious and are not interested in spiritual/religion-based support groups. (Please don't reply with how we need god...we don't.) My name is Robin. I registered under his name. I am a mother of four, a grandmother and a great-grandmother. Any information is welcome. Thanks.

    15 Answers from the Community

    15 answers
    • cam32505's Avatar
      cam32505

      You can contact the American Cancer Society for referrals to local programs in your area. Also, a social worker at the hospital may have more referrals for you. There is also the Leukemia/Lymphoma Society. My mother had leukemia and we called them for information. They put us in touch with a patient who called and spoke with my mother about his disease and treatment. It was very reassuring to know that it wasn't a death sentence. As for dealing with cancer, you will probably hear a lot about God in any support setting. (you can make your wishes known if you join a group).

      almost 6 years ago
    • ladyd2013's Avatar
      ladyd2013

      I would call the American cancer society they are a wealth of information it will ease some of the fear your having. Good luck to you and your family.

      almost 6 years ago
    • mkjetset's Avatar
      mkjetset

      I agree that the National Cancer Society is a good bet. I would also ask your husband's team of doctors about what adjunct services are available to caregivers and families. I wish you and your husband well and I hope you get the help you are seeking!

      almost 6 years ago
    • lilymadeline's Avatar
      lilymadeline

      Hi Robin! Ask the oncologist for a recommendation to a Cancer Support community, something like Gilda's Club...or maybe Gilda's club itself if you live near one. I live near the Benjamin Center cancer support community and they always seem to have wonderful ( non religious ) support groups for caregivers as well as patients! I have been a caregiver to a cancer patient and a cancer patient myself, and I believe that it is actually harder to be a caregiver than a patient! I worried more as a caregiver because it is so hard to watch someone you love going though this. And If your oncologist can't direct you, just ask for a social worker at the hospital- they always know about cancer support groups. Good luck I am sure that you will find something soon! Jane

      almost 6 years ago
    • nicki0920's Avatar
      nicki0920

      I cannot say enough good things about the Leukemia and Lymphoma Society (LLS.org). They are a wealth of information. They can ship you reading materials on all aspects of care and info on your husband's specific type of lymphoma. They can help you find support groups for caregivers in your area. They even offer two financial aid programs. One program is a flat $100 to help with gas and incidentals. They also offer a copay assistance program that will help cover the copays associated with treatment.

      almost 6 years ago
    • PerryLowell's Avatar
      PerryLowell

      Hi Robin, I don't have any advice to add to the respondents, but I wanted to say to remember that you'll read a lot of statistics and hear a lot of generalizations - just remember that statistics are general and they aren't your husband, and the range of response to treatment is varied and wide. So don't pay too much attention to them, and focus on Darrell and optimizing his treatment for the best results. Worry about things as they come up, and don't waste time on worry at other times - it just saps your energy. I know it's easier said than done, but as one not THAT senior a woman who isn't religious, either... it's important. So put aside the terror and worry. You won't know anything more until Friday, and there's always time to worry then.

      -Perry-

      almost 6 years ago
    • Darryl1's Avatar
      Darryl1

      I called and got in touch with Cancare,they put me in touch with someone who is in my area and who can relate to what I am going through. My husband has stage 4 prostate cancer and I needed someone to talk to.We go out for lunch or I can always call her if I really need an ear,which lately I'm surprised she has an ear left.The poor woman,I've cried to her ,vented and just talked.She has been a godsend

      almost 6 years ago
    • barryboomer's Avatar
      barryboomer

      Check out The China Study, Raw Foods Diet and Juicing for Cancer and a site called chrisbeatscancer......All Good and Hopeful Stuff.
      Barry

      almost 6 years ago
    • two4god's Avatar
      two4god

      follicular lymphoma is a very slow growing cancer and he can live with it for many years.

      almost 6 years ago
    • Schlegel's Avatar
      Schlegel

      Don't worry about the staging. If you have to have cancer, follicular lymphoma is one to have. It is a slow-growing cancer. I was stage 4 when I was diagnosed in April 2005 at age 60. I am now 69 and expect to be around five or ten more years. Also, if you have recurrence which is guaranteed, you can often wait six to twelve months to get treatment. Right now getting all the tests and getting setup for treatment is stressful, but things will calm down.

      almost 6 years ago
    • Schlegel's Avatar
      Schlegel

      Sorry, I didn't answer the question. Many cancer centers have support groups. Here in North Carolina we have a good one at Duke. Also, there are independent cancer support centers. Another source of support is cancer retreats. I recommend the one sponsored by the Smith Center in Washington, DC. They do offer partial scholarships.

      almost 6 years ago
    • Schlegel's Avatar
      Schlegel

      Don't worry about the staging. If you have to have cancer, follicular lymphoma is one to have. It is a slow-growing cancer. I was stage 4 when I was diagnosed in April 2005 at age 60. I am now 69 and expect to be around five or ten more years. Also, if you have recurrence which is guaranteed, you can often wait six to twelve months to get treatment. Right now getting all the tests and getting setup for treatment is stressful, but things will calm down.

      almost 6 years ago
    • meyati's Avatar
      meyati

      Hi darling, it's me again.Try myadvocatehelps.com You might qualify, it has more nitty gritty details. It works for about a dozen insurance-senior health plans. Like I didn't know that in my city, the city has a program that picks people up and takes them to a community dinner. ACS didn't help with things like this.

      They also help with getting help with medicare part D discounts, house keeping -They are social service coordinators.

      almost 6 years ago
    • dbennett's Avatar
      dbennett

      sounds like you are on the hurry up and wait game. First I would like to take breath....... Now get a second opinion on his dianosis. there are several treaments to choose from, if you are luicky he may only need a small amt of radiation. lesser ot the two evils. I you have any qeustions pls feel free to write. God Bless

      over 5 years ago
    • dbennett's Avatar
      dbennett

      There is a website called care.com that may be a good resource.

      over 5 years ago

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