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Caregiver Tips: The Big Balancing Act

by Ellen R. Silver

Caregiver Tips: The Big Balancing Act
Ellen R. Silver is a nurse practitioner, health care administrator, advocate, and mother to a long-term cancer survivor diagnosed at age 15. Ellen employs all of these experiences and skill sets as Executive Director of The Wellness Community-West L.A., and President, Board of Directors, Sarcoma Alliance.

I became a caregiver when my 15-year-old daughter was diagnosed with cancer in 1999. It’s been nine years and I’m still exhausted. But I have learned a lot along the way, some things that I believe are important for every caregiver, regardless of your relationship to the person with cancer (parent, spouse, child, friend, co-worker) or the amount of time you will devote and duties you will fulfill.

No matter what, the relationship must remain the same. If you are a parent, continue to parent. If you are a friend, continue to do the friend things you always did. If you are a co-worker, continue to work as a team. If you are a spouse, continue your marriage in the same way and manner.

The roles might be changing in the relationship—perhaps now the caregiver is taking the prominent role in some decision-making or taking on some additional duties – but the relationship must remain the same in your heart, in your style, in your approach. Changing the innate chemistry between you as the caregiver and the person with cancer will cause great harm to the relationship during the cancer experience and for years to come. So the most important tip is – be yourself!

Now some other tips:

Take care of yourself.

Do what you need to do. It is not selfish or thoughtless to engage in your routine activities or the ”perks” of life. What do I mean by this? Take a tip from my experience. As I looked at my bald-headed daughter, I found myself thinking that if I cared for my hair I would be flaunting my locks in her face. As a result, there was no styling, no coloring, nothing more than tying it back and pretending it wasn’t there. I broke the cardinal rule mentioned earlier – I was not being true to who I am or what my daughter knew to be true about my routines. Other must dos when being a caregiver include: eating right, exercising regularly, engaging in relaxing activities, getting your required sleep and paying attention to any physical signs and symptoms of your becoming exhausted or sick.

Set boundaries with the person you are caring for.

It’s OK to say “No, I can’t do that for you right now.” Give accurate and realistic timeframes of when you can and can’t do something. You can also disagree with the person who has cancer. Offer your opinion, whether it’s on a cancer-related topic or the issue of the day. Lively debate and discussion reminds everyone you’re alive! It’s OK to get mad at the person you are caring for. Argue, scold, yell just the way you always did before the cancer. Parents yell, spouses argue, friends get annoyed. Keep it real.

It’s OK to ask for help from another friend or family member.

Even caregivers can ask for help! Divide and conquer. Divide up chores, errands and other activities. Assign tasks to everyone who you believe is reliable and will follow through with what needs to get done.

Prioritize.

There are so many things that need to get done, that need to be paid for, that will occupy your time. As in everyday life, prioritize when you will do things. Let go of the unnecessary.

Keep records and know what needs to be done.

Create a system for recording appointments, lab test results, important phone numbers, next steps. Be informed about the health insurance policies of the person you are caring for. Know what ongoing bills (mortgage, utilities, car insurance) need to be paid for or what deadlines the person is facing for work or school. As the caregiver, you will more than likely be the historian of the cancer experience. Record all relevant information; keep it updated and secured. Be sure mail is being opened and that the ongoing routines of both their and your life are being maintained. From car repairs to rain gutter cleanings – these things need to get done.

Sometimes, less is more.

Often times what’s needed from the caregiver is just being. Sitting nearby. Quiet support—a card, a foot massage, a cold sponge on the forehead. Nothing huge. Just be there. Just in case. Be there while they’re sleeping. Be outside the door while they’re showering. Stay close.

Ask.

What do they want today? What are their priorities? What do they need to accomplish and get done? Do what they need, not what you think they need.

I end where I began. Remember to take care of yourself. You’re not sick; your life needs to continue and go forward. Do what you need to be doing for yourself, from socializing with family and friends to attending that out-of-town conference. If you are going to rearrange your life, move back to town, shave your head in camaraderie, make sure you are doing it for the right reasons—because the person with cancer wants and needs you to.

Nine years later, I can say with confidence that the bond between my daughter and myself grew as a result of her cancer experience. It was time together that I will cherish forever. We laughed together, cried together and snuggled together. We yelled, got angry and discussed everything from her cancer to life around her. And yes, don’t doubt for a moment that it was my cancer experience as well. I remain to this day the historian of the experience, the record keeper, and the caregiver. This was and will always be the most important challenge of my life, and it was an honor to have given her my best!

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This year, approximately 1.65 million Americans will be diagnosed with cancer and about 585,720 will die of the disease.