A couple of years ago one of the office supply stores introduced the “EASY button.” The idea was that you push the button and everything was taken care of for you. I’ve been thinking about that button a lot lately, and imagin­ing what such a button could do for caregivers.

As with myeloma patients, every caregiver is different, and therefore their needs are special to their circumstances. But I think we can know some things in gen­eral about the journey that a caregiver goes through and what type of EASY button would be needed at each stage.

An EASY Button For Crisis Mode

As a caregiver, if your loved one was diagnosed with multiple myeloma and they began their treatment im­mediately, you have been in crisis mode. I’ve heard many stories where patients went from leading normal lives to being unexpectedly diagnosed with multiple myeloma. Before these care­givers could process the news in terms of their individual response to it, their loved ones were hospitalized and given radiation for their bone lesions and drugs to treat their disease.

Many caregivers in this situation go on “autopilot.” They gird up their strength and forge ahead without think­ing about anything else other than what must be done for their loved one. They haven’t had time to per­son­ally process the change, or their own needs. Their focus is on helping their loved one get through that day, and ensuring that they have all the medical care they need.

This was the case for me when my mom had ovarian cancer. In the hospital, we dealt with not only her malignancy, but additional surgeries from recurring infections as well. Every day there were blown veins, wound sites that needed to be cleaned, nausea and fevers to address.  I stayed with her at the hospital and did everything I could to be her advocate. I communicated her needs to the staff and tried to make her days brighter with my company or a favorite magazine. With all the traveling between my work, home, and her hospital room an hour away, I needed an EASY button to let me regroup. After a few months, my stores were tapped. I felt emotionally and physically exhausted.

Caregivers at this stage need an EASY button that gives them a chance to catch their breath and restore their energy so that they can get through another day until the crisis is over.

An EASY Button For Ready Mode

Being a caregiver for my husband Daniel looks very different than it did for my mother. When your loved one has smoldering myeloma, you’re waiting to be called into action. You live in ready mode. This can be chal­lenging for a caregiver. I do not have traditional caregiving tasks at this stage. My caregiving role is to act “normally” in a world that no longer is normal. My task is to help us forget the multiple myeloma that is growing in his bones or the treatment that lurks in the future. And my job is to prepare.

We received some wise counsel from a nurse in our myeloma clinic when Daniel was first diagnosed. She said something like,

“You’ve been given a unique window of time. Save all the money you can. This is a very expensive disease. Live as normally as you can, try to not waste the present worrying about tomorrow. If you like to travel, do that. Do what you want to do now, while you can. I see people every day who don’t have these options.”

Knowing that she has seen the worst that multiple myeloma can bring, I took her words to heart and have lived by them as best I could.

I have learned that the best way for me to be a caregiver at this stage in our lives is to do whatever I can to alleviate the stress that comes with the uncertainty of Daniel's condition, and the impact that it may have on our future.

A lot of our focus at this stage is on our finances, since that is one thing we can control between now and the time that he starts treatment. Knowing that multiple myeloma treatment can cost in the tens of thousands of dollars each month if not covered by insurance, I work with Daniel to ensure that we purchase the best insurance plan available from our employers.

I also know that, even with insurance, co-insurance and co-payments can total into the thousands each month. So I do my best to weigh the balance between spending and saving for tomorrow. I prepare for the possibility that there may be a time when Daniel cannot work, and I save for medical bills that could easily drain in one year most people life’s savings.

As a caregiver, I also try to help us prepare mentally and emotionally for his myeloma specialist visits, where we brace for the news that it may be time for him to start treatment. Then, after the visit, I breathe a sigh of relief, and tell him that I am thankful for a good report.  I try to focus on the positive numbers in the report, and avoid the indicators of his disease progression. I don a smile and try to go back to our “normal” life for another 11 weeks until the cycle starts again.

This is caregiving for me, and many other smoldering caregivers in “ready mode.” Perhaps it’s not surprising then that our EASY button would bring us peace of mind to help effectively prepare for the mental and emotional rigors of this stage in the journey.

However, after thinking about it a while, it occurred to me that we don’t really need these two different EASY buttons. There is really only one EASY button that we need, and it addresses all our needs:

At the end of the day, what we need is a cure for multiple myeloma.

As we wait for it, I’m thankful for the many people working towards a cure, and for the new treatments available. I’m grateful for the strides that have been made since my husband’s diagnosis in 2012, and that he has not started treatment yet.

And I continue to pray ... pray that someone will push the EASY button for a cure.