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April 28, 2013 at 12:56 pm #21223Laurielala55Participant
Last night I posted on the Stage IV forum. What looked promising for my husband was his initial response to PD-1. At this time he is out of the trial as he needs radiation. If he doesn’t qualify for any other upcoming trials (waiting for other genetic testing) he will only have chemo as an option. The wonderful thing is he really doesn’t understand the nature of this disease. I, like most caregivers, do far too much “research” in the hope that I can find something that will help. So each day reality hits me in the face. I believe I am looking at a man that has few options and I don’t know how to keep a positive face. I try to keep it as normal as possible, which means serious conversations about this disease do not happen. Eleven years ago I was diagnosed with a rare bone marrow/blood disorder. I have been transfusion dependent for the past 5 years. My potential cure is a bone marrow transplant. Obviously, that is out of the question at this time. The burden of my husbands disease has taken its toll on me. I never thought I would be his caretaker through a devastating disease. I always accepted my fate but never planned for the tables to be turned. I am usually a very take charge kind of person, but I feel nothing but sadness at this time. I do have the name of a counselor and it is my intention to make an appointment. I’m sure caregivers out there understand that this disease leaves little time to take care of you own needs. We have supportive family and friends who are willing to help at all times but really do not understand the totality of this role as caregiver. I hope they never have to. Thanks for listening !!April 28, 2013 at 9:02 pm #60288Catherine PooleKeymaster Oh you do carry a huge load. I’m so sorry for this situation. I did find an excellent resource for you to find a counselor and talk about the difficulties:
Referral information for Cancer Patients
APOS offers a Toll-Free HELPLINE ~ a national resource provided to help people with cancer and their caregivers find counseling services in their own communities.
APOS has a toll-free Helpline through which cancer patients, caregivers and advocacy organizations may obtain referrals for local counseling services throughout the United States.
This referral program aims to connect cancer patients and their caregivers to psychiatrists, psychologists, nurses, social workers and counselors skilled in the management of cancer-related distress.
If the Helpline staff cannot find local support services and there is an immediate need for help, an APOS mental health counselor from the Helpline will continue to support them by phone while they seek professional help with coping in their community. Counseling sessions will be scheduled at the discretion of the Helpline counselor according to patient need.
To request a confidential referral, please call: Toll Free 1-866-276-7443
(1-866-APOS-4-HELP) or you may send an e-mail to the Helpline.
I hope this will help you and that you take up any offers from friends and relatives to lend you a hand as well.April 29, 2013 at 2:08 pm #60289Laurielala55Participant
Thanks you so much for your response. I do know someone in the area that other friends have used in time of crisis. If I find that it is not the appropriate person to deal with these specific issues I will certainly not hesitate to contact the resources you gave to me. I appreciate all that you do to support those of us dealing with this diseaseApril 30, 2013 at 2:45 pm #60290PatWParticipant
Laurie, as the primary caregiver and “researcher” for my brother (Stage IV widely disseminated and with brain mets at diagnosis), I understand exactly how stressful and time-consuming your role is. With your own serious health issues to deal with, too, your situation is much more difficult than mine. My heart goes out to you.
I hope you have signed up with a good hospice organization. Most people think that hospice is only for the last 2 or 3 weeks, but in fact 90% of their work is done in the home starting as soon as you have a bleak prognosis. They provide a lot of practical assistance as well as excellent information. I started seeing a hospice grief counselor during my brother’s illness and she was very, very good (and I’m very picky about my counselors). I particularly liked the fact that she had many years of experience with problems peculiar to end-of-life issues. Things like patients or caregivers who are in denial and will not cooperate with estate planning, for example. Ordinary therapists don’t deal with that sort of problem very often. This hospice also sponsored free caregiver support groups where you could go and let down your hair and find out how other caregivers handle various problems. So if your husband is not registered with hospice, I suggest you look into that.
The other thing I will say is that my brother, like your husband, didn’t want to know any details about his disease, treatment, or prognosis. He left all that stuff up to me. Eventually, I decided to let him handle things his own way and only gave him detailed information if he asked for it. However, as his executor, I did insist that he cooperate with me in getting his affairs in order “just in case”. I did it slowly and little-by-little. First add my name to his bank account “in case” there ever came a time when I would need to pay his bills for him while he was in the hospital or at home feeling poorly. I found and organized all his important papers– car title, life insurance policy, military discharge papers, etc. And finally, after much foot-dragging on is part, I got him to sign a medical power of attorney and make a will– again, “just in case” he needed them some day. I am very glad that I took all those steps, and grateful to my brother for cooperating, because during and after his final illness things went very smoothly for me as executor. Hospice is also good at helping you know what documents you will need and at talking to the patient about the importance of pulling these things together.
During all this time, I told my brother that I hoped and expected that this new treatment (whatever it was) would work. He wanted optimism. But I asked him, for my sake, to cooperate on these preparations in the unlikely event that we would need them some day. Yes, it was difficult to maintain a sunny outlook on the outside while feeling discouraged and anxious on the inside. But in a way it was good for me to force myself to smile when my heart was aching. Emphasizing the positive when I was talking to my brother actually turned out to be a good emotional antidote to my underlying negativity. And suspecting that he was not likely to be a long-term survivor made me really appreciate and make the most of the additional 6 months that modern cancer therapy gave us. I will be forever grateful for that.
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