• Spouse/Caregiver/Support Group

    Asked by RhonnieT on Friday, March 15, 2013

    Spouse/Caregiver/Support Group

    There does not seem to be a support group for the spouse of cancer patients in my area. Does anyone have any suggestions? We (my husband and I) are dealing with two losses in our family during my husbands journey through bladder cancer. We lost my Dad at the age of 65 in November just before my husband was diagnosed and then we lost our 32 year old son on Valentine's Day of this year.

    5 Answers from the Community

    5 answers
    • AlizaMLS's Avatar

      Dear RhonnieT,

      My name is Aliza and you have my condolences on the loss of both your father and your son. This makes your present situation with your husband's bladder cancer so much more difficult for you both. I will try and help you to the best of my ability.

      Rhonnie, I'm a Medical Librarian and though I'm retired, I still do medical research for people here on this site and others. Medical Librarians do many things - we train physicians how to search, we research for people/patients on diseases, and locate information and resources for them and we refer them to doctors, hospitals, institutions, and agencies, etc,

      Since your question touches on a number of topics and I'm trained to respond to all of them, I will try to address all of the needs you have right now. I can't fix things for you, but I can perhaps help you get to people that will help make things a bit easier for you and your husband.

      Re a support group - you may want to call The American Cancer Society and see if there are any in your area if you have not done so. Something I think that will definitely help you and your husband is to contact CancerCare. They have trained Oncological Social Workers that deal only with Cancer patients and their caregivers. Talking with them is wonderful! I have a counselor through them that I work with currently. It is not like "regular therapy". They don't care about your "toilet training" and they won't "blame your mother"...;) But they will help you deal with the angst that cancer causes for a patient and his/her caregiver. They may also be able to refer you to a support group that's within shooting range of your locale. Also be sure to ask at the hospital where your husband is being treated.

      You are obviously traumatized by the recent deaths in your family. I cannot imagine losing a child at age 32 (my daughter is 26) less than a month ago and facing your husband's cancer besides having lost your Dad so recently as well. I'm going to recommend that you seek out through whatever means you can (I don't know your son's cause of death [if you want to privately email me feel free to do so, but not obligated]), that you locate a grief support group for bereaved parents as well as perhaps a hospice bereavement support group (if your Dad was in hospice) so that you can try to cope with your feelings. You (and your husband [if he's well enough to attend these] have a lot going on and it would be better for you to be able to share your feelings with others who've had common experiences. I know, I attended a hospice bereavement group for my Dad who died of chronic leukemia 3 years ago and it helped a lot!

      There are also online support groups if you cannot locate a group in your vicinity. If you are having difficulty (for whatever reason [doesn't matter what] doing the research to find these right now, email me privately and I will help you!!

      Also be sure that if you belong to a religious community, it's a great time to touch base with your clergyperson and have them do whatever they can to help you-I have friends in the clergy and know that there are a lot of things that they are able to accomplish in times such as this,

      I wish for you some sense that you are taking control of your life again and that you and your husband will be a source of comfort for each other and that your husband will be as comfortable as possible as he continues his journey.

      The best advice I can offer you is very simple but very difficult to do - distract yourself. You cannot live mourning/grieving and cancer 24/7. If you do you'll end up being hospitalized and no help to yourself or your husband. Start with small things - watch a funny movie or DVD, do a crossword puzzle, listen to music, read a book -there's an online bookgroup called www.goodreads.com. You can track all your titles, find others, join small bookgroups in different genres, write bookreviews, read others' bookreviews, and generally have fun without leaviing home. You should also take time to socialize with a friend or two or more - go to lunch, go shopping, have a drink. Little things slowly.

      I know you are in Kansas. I'm in NYC. Again I'm only a few seconds away via the Internet and I'm happy to research for you if you're just not up for it. Email or message if and when you need me. I'm here for you.

      Warmest Wishes,

      over 3 years ago
    • nancyjac's Avatar

      I would widen your search to look for caregiver support groups, not cancer support groups. Caregiver support groups generally incorporate not just cancer, but also other illnesses like heart disease, MS, COPD, etc. that might require extensive caretaking services. But from what you posted, it sounds more like you may be looking for grief counselling support group, which is something different. I would suggest you check with his oncologist or you local social services department for your city or county to see what might be available.

      over 3 years ago
    • carm's Avatar

      What you are looking for is an online bereavement support group. I work in end of life care and I am attaching a link to an online grief support site, but there are others as well, like "Compassion and Choices." This should get you started, Carm RN.


      over 3 years ago
    • geekling's Avatar

      OMGosh. My very deepest sympathies for your losses. A father one might expect, even though he was young but one does not ever think to out live a child. I'm so very sorry for this happenning to you. It seems as though you might benefit from multiple support groups until you figure out what is best for your needs.

      There are bereavement groups that are often led by therapists. The doctor where your hubby is treating may know of cancer support groups. When I treated, the hospital had support meetings and speakers with regularity. As a caregiver, you need a separate support group. If your doctor can't help, contact your State's Department of Elderly Affairs. Even if you are not elderly, it will be a place to start and the workers might have contacts for you.

      As a caregiver, you must remember to care for yourself.

      There is usually a Gilda's Club in every State. I hope there is one near to you. They are often oasises of respite from your daily burdens. Their staff might also have local contacts for you.

      I truly hope you can get the help you need and soon.

      over 3 years ago
    • healed123's Avatar

      First of all I am so sorry for your loss. My advice would be for you to ask your husband's oncologist or oncology nurse about support groups in your area. In the mean time, your family will be in my prayers.

      over 3 years ago

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