Patient Navigation: Creating a Toolkit for Caregivers

The first post in a two-part blog series focused on support for caregivers. 

Several years ago, I facilitated a Patient and Family Advisory Council at our cancer center.  Our patients and families provided us with great insight on our program and helped us create our yearly goals.  On one occasion, one of our family members said, “Hey, what about us? The patients get these great journals, but we need resources too.”  This became our next project.  Two important takeaways from our experience:

• Don’t Reinvent the Wheel: In creating a toolkit for caregivers, first keep in mind that there are excellent caregiver resources available through national organizations, so there is no reason to reinvent the wheel.
• Be Concise: Keep your information short, educational, and practical. Our advisory council and countless focus group participants at many cancer programs have said, “Don’t give us so much information! If I get too much, I don’t read anything.”

For navigators interested in putting together a caregiver toolkit, read on for some basic but very good information to share with caregivers.

Remind caregivers that “the care you give yourself is the care you give to your loved one.” The stress of caregiving can take an emotional and physical toll. Caring for someone you love with cancer is undoubtedly difficult. The stress of caregiving can often manifest itself both emotionally and physically.  While caregiving is a rewarding experience that can strengthen the bond between you and your loved one, 60 percent of caregivers report symptoms of depression and other painful signs of strain.

Physical effects of caregiving can include:

• Sleep disturbances
• Weight fluctuation
• Fatigue
• Stomach/digestive problems (cramping, constipation, gas, heartburn, etc.)
• Headache
• Weakened immune system
• Skin changes

Emotional effects of caregiving can include:

• Depression
• Anxiety
• Feeling of isolation
• Withdrawal
• Substance abuse
• Mood swings/irritability
• Lack of concentration/memory

While your main concern is surely that of your loved one, it’s vital to care for yourself as well during this difficult time. If you experience any of the symptoms listed above, contact your physician and ask what your healthcare provider suggests. Fatigue is usually the first and most common complaint of caregivers, so ask your doctor about effective ways to manage your fatigue.

Encourage caregivers to ask for help. Provide some practical tips, such as the following:

• You may have had offers of help with everyday tasks such as running errands, getting groceries, making a meal, taking your loved one somewhere, etc.  At first, most people are reluctant to accept these offers. Consider that friends, family, and neighbors really want to help. People will often say, “If there is anything I can do, let me know.” Take advantage of the offer!
• When asking someone for help, you may want to go over a list of things you need assistance with, letting them choose what they’d like to help with.
• Some people report being the sole caregiver serves to increase stress and may cause tension within the family. One caregiver’s solution to this problem was to create a weekly calendar where family members could record the tasks they performed for their mother with cancer. This way, tasks could be spread out evenly among her children.

Offer some coping strategies for the caregiver, including:

Set Boundaries. Primary caregivers tend to absorb the entire caregiving role. Care recipients often go along with this, preferring the care of the primary caregiver to that of a less familiar family member or a stranger.  You cannot do everything; set limits on what you can do yourself and what tasks can be delegated to others.

List things you need for self-care. Make a list of activities that will provide a pampering break from your caregiver responsibilities. Give your morale a boost by such activities as taking a hot bath, exercise, going out for a meal, or reading a book.  Post this list as a reminder to yourself and others in the household.

Plan for respite care. Obtaining those short breaks for self-care requires a plan for others to care for your loved one. Your plan should include the type of care required, hints/suggestions on giving the care so that routines are not severely altered. The plan should also include how often and for how long a time period the respite caregiver will be used.

Make time for laughter. A funny movie, a visit from a fun-loving friend, reading a book authored by a humorist, sharing a good joke can really help lighten things up. Humor helps keep frustration in perspective and minimize anger.

Keep in touch with friends. When caring for a loved one, the primary caregiver’s social life is often the first thing to go. You may think you do not have either the time or energy for keeping up with friends; however, it’s been shown that caregivers who remain socially active experience less depression and physical illnesses. Socially active caregivers are less overwhelmed by the responsibilities than their counterparts who turn down social invitations and lose contact with friends.

Shift gears. When you begin to feel rushed, you need to slow down. Researchers have found that hurrying often actually slows down caregiving activities. For example, rushing can led to delays caused by dropping items, spilling liquids, and misplacing keys, just to name a few. Try to slow down during caregiving and take time to relax throughout the day.

Keep it in perspective. Take time to read the morning paper or listen to the news. Staying abreast of what is happening in your community and the world helps put your problems in perspective. If the major topics of conversation in the house are focused on the health and care of your loved one, plan to set time aside when the conversation centers on some other topics. Mealtime is a time when this works well. Everyone participating in the meal can agree in advance to discuss other topics.

Plan for occasional indulgences and rewards. We all need some occasional pampering to maintain both physical and mental health.  Take time for your favorite snack, listen to music, or just take some “alone time” and enjoy whatever makes you smile.

Join support groups.  Members of a support group offer you understanding at a level others cannot because they are going through a similar experience.  They have real-life experiences to share including tips on how to cope.

Source: Caring to Help Others, A Training Manual for Preparing Volunteers to Assist Caregivers of Older Adults, 2000.

Stay tuned for Part Two: 25 Tips for Caregivers.

ACCC member Tricia Strusowski, MS, RN, is a consultant with Oncology Solutions, LLC.