[Patiently]

Support for wife/caregiver/advocate

by Patiently on Wed Jul 11, 2012 8:35 pm

Are there any support resources for spouses? I need to talk to someone about the real nitty-gritty here. My reality doesn't always line up with the cheerfulness and upbeat messages I see here. I have a husband who is on the dex rollercoaster, has started drinking to deal with the diagnosis and is going in two directions at the same time. I'm scared and angry at paying $800/month for Revlimid (copay as we don't qualify for assistance). Our life feels like it is imploding on all levels and I need some solid and compassionate advice. Please don't tell us to "man up!" Thank you

[Kansas]

Re: Support for wife/caregiver/advocate

by Kansas on Wed Jul 11, 2012 10:40 pm

The center where your husband is having treatment may know of local support groups. They should also have social workers, patient navigators or someone for you to talk to. Having said that, this is also an excellent source. Most of the folks who post are the patients...but doesn't mean the caregivers are not also monitoring and providing input. Maybe sometimes people don't put down everything for fear of scaring us more than we are. In our situation, I am the one on the site most of the time and share with my husband (diagnosed in 2010 - 5 to 6 rounds of Velcade and then transplant end of 2010. Has been in remission since then - still some after affects but no treatments. Being the caregiver is tough - kept my sanity by learning as much as I could about the disease and the treatment in order to be a good patient advocate. Since I couldn't control the fact that he had myeloma, I could at least be knowledgeable and feel like I had some control. I also relyed on the higher power when I would get at my lowest-never underestimate the power of prayer. Kay

[Jade]

Re: Support for wife/caregiver/advocate

by Jade on Wed Jul 11, 2012 11:42 pm

I have been dealing with the ups and downs of being a caregiver for almost 5 years now. Learning as much as you can about myeloma helps when there are decisions to be made and the ill person is too weak or emotional to process everything. It's also important to supervise his meds, make sure your husband is drinking enough fluids ect. Dex is a hard one. The mood swings can be very intense. Don't take the outbusts personally. The reality is both your lives have changed and will never be the same and that will take a while to adjust to. The meds - Revlimid can cause depression and chemo brain (confusion, fogginess) if he's been on any heavier meds is real. Talk to your doc. Some are better at dealing with the emotional reactions to this terrible disease than others. I found that the doctors are good at keeping people alive longer but don't always consider the quality of life issues. Men sometimes have more difficulty expressing the fear they're feeling and it can come out in other ways. There may be anger issues for both of you. A good therapist helps if you can find one.In our case I had to tell the doctor how bad things had gotten - that if he put him on dex again he could take him home with him before they took it seriously. Medications help. for dex mood swings ativan helps short term. We're now using low dose Zyprexa and that works even better. The weekly dex, the monthly blood results, the pain issues all add up to a lot of stress for the whole family. There are good and bad times but I'm still waiting for things to get easier.

[Rhonda]

Re: Support for wife/caregiver/advocate

by Rhonda on Thu Jul 12, 2012 1:08 pm

As a caregiver, I can certainly understand what you are experiencing and feeling. Your whole life is turned upside down. In the beginning I felt totally helpless and alone. Soon though, the many other caregivers at the Myeloma Clinic at UAMS became my allies, my support system. I learned through them that communication was essential. Talking with other caregivers pulled me through those first few rounds of treatment. This forum is great too--reading what others experience is so beneficial. The Dex merry-go-round is tough. Do talk with the doctor about that--he/she may be able to help. As for those expensive out of pocket expenses, contact the American Cancer Society (800-227-2345), the Leukemia & Lymphoma Society (800-955-4572), and Patient Advocate Foundation Co-Pay Relief (866-512-3861). They are all very helpful and offer many resources for financial burdens. There are many others that offer help too--each of the ones listed can provide you a list. Also, call the Chronic Disease Fund (877-968-7233) for help. Don't hesitate to call these numbers. They are there to help you! God bless you on this journey!

[Patiently]

Re: Support for wife/caregiver/advocate

by Patiently on Mon Jul 16, 2012 5:41 pm

Thank you very much for your thoughtful responses. I can see in this short time that the support of other spouses is really crucial. All of your suggestions are excellent and I will do what I can to shore up my resources. Blessings to each of you for your generosity in responding. I hope your lives are filled with peace.