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Caregivers' Guide for Bone Marrow/Stem Cell Transplant
Practical Perspectives

How to Be a Successful Family Caregiver: An Advocate's Perspective

by Suzanne Geffen Mintz

Defining the Help You Need and Figuring Out How to Get It
Asking for and accepting help is a complex issue. Obviously you first need to admit that having someone help will make a real difference in your loved one's quality of life, and therefore yours as well. Then you need to define what help you need. Which tasks or chores would be easier to ask others to do? Which do you really want to do yourself? Here are six steps to getting help:

• Recognize that caregiving, like any job, is made up of lots of individual tasks. Not all tasks are of the same importance. The challenge is to know the difference.
• Recognize that asking for help is a sign of strength and not of weakness. It means you truly have a grasp on your situation and have come up with a proactive, problem- solving approach to making things better.
• Create a list of tasks that need to get done in any given week. When you see how long the list is you'll quickly understand why you are so tired.
• Group your tasks into categories such as personal care tasks, transportation and household chores.
• Write down your caregiving worries. Seeing them in black-and-white helps diffuse some of their emotion. It also allows you to think more rationally and understand how getting help might lessen the stress.
• Share your lists with someone you trust before you reach out for help-a friend, therapist or clergy, perhaps. Then take a deep breath and ask for help or guidance in resolving your worry. Don't get discouraged if you are rejected at first. It takes perseverance. The goal is better care for your loved one and yourself.

Tips for Family Caregivers from Doctors

• Write down questions so you won't forget.
• Be clear about what you want to say to the doctor.
• If you have lots of things to talk about, make a consultation appointment.
• Educate yourself about the disease.
• Learn the routine at your hospital.
• Separate your anger and sense of impotence about not being able to help your loved one as much as you'd like from your feelings about the doctor.
• Appreciate what the doctor is doing to help, and say thank you from time to time.

Tips for Doctors from Family Caregivers

• Be open and forthright.
• When you prescribe medications, be sure caregivers understand potential side effects so they know what to expect.
• Be accessible-especially when a caregiver is opening his or her heart.
• Be sensitive about where you talk to caregivers about difficult subjects-waiting rooms and corridors are not appropriate.
• Now and then ask the caregiver, "How are you?" Let them know you understand that illness is a family affair.

Share the Caring, Helpful Hints for Caregivers and Those That Care about Them

If you're a caregiver who needs help or if you're a friend who wants to provide it, use these handy checklists to help create an action plan:

Checklist ... Help I need:

• A night out with friends
• A ride to doctor's appointments
• Mow the lawn or shovel snow
• Dinners prepared
• House cleaned
• Shopping done
• A shoulder to cry on
• A handyman
• Pick up prescriptions
• More information on available resources
• Some quiet time alone at home
• A sitter at home
• Someone to ask how I am

Checklist ... Help I can Offer:

• Dinner and a movie on me
• A ride at pre-assigned time
• A lawn mowed/driveway shoveled
• A meal prepared .times a week
• A maid brigade once a .
• Grocery shopping every .
• A shoulder to cry on
• A couple of hours of my tools/time
• Run errands
• Resource research
• Taking . out for a few hours
• Some of my time to stay with .
• A weekly phone call

Suzanne Geffen Mintz is President/Co-founder of the National Family Caregivers Association, the only organization comprised of and reaching out to all family caregivers. In September 2006, Mintz was named a winner for the first-ever national Purpose Prize, a major new initiative to invest in Americans 60 and above who are leading a new age of social innovation sponsored by Civic Ventures. She is author of "Love, Honor, & Value - A Family Caregiver Speaks Out About the Choices and Challenges of Caregiving," (Capital Books 2002) and regularly writes for numerous publications on the issues related to family caregiving.

This chapter was excerpted and edited from a series of agency brochures available from the National Family Caregivers Association.

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