Caring for the caregiver

If you’ve ever had to ask for help, you know how hard this can be. Accepting the help can be even harder. At first, the family may be reluctant to allow people to help. But often, as situations worsen, the care recipients become more open to expanding the list of people who they will let help.

Ask the caregiver who he or she is comfortable with providing help. Billups suggests asking her to start an email and populate the “To” field with family and friends she’d like to reach out to. Then she can copy this list and paste it into the body of the email, clear the addresses from the “To” field, and send the email with the addresses to you. Now you have email addresses of potential volunteers.

If the caregiver is at a loss for names, help her go through her circles of friends and the patient’s circles to identify possible volunteers: family, church members, school families, club or hobby members, neighbours, co-workers and volunteer networks. You then may have to do a little digging to come up with email addresses.

Don’t worry if your list starts out small, Billups says. You can expand the list as the family’s needs change or increase.

Technology has really made this aspect of helping a lot easier. Many organizations and websites offer free tools to help you disseminate information in a private way and organize people efficiently.

You want people to choose how they help. Usually, you’ll have to establish a list of tasks on an online calendar. Billups suggests putting all of the needs on this list.

Allow people to sign up for one, two-hour shift, once a week—if you are looking at the support network being in place for only a couple of months. If you foresee needing to keep the team in place for a longer period of time, limit shifts to one, two-hour shift a month to avoid burnout.

Encourage people to sign up for the same task week after week. That way, you don’t have to “retrain” different people each week for the different tasks (for example, you don’t have to show a new person where all the cleaning supplies are or repeat what type of milk the family prefers). Having the same people complete the same tasks each week also allows continuity with respite visits. (Respite visits are those designed to give the caregiver a break from caregiving.) The patient can look forward to seeing the same visitor each week.

Although online tools may be great for organizing food for one event, managing meals on a weekly basis can quickly become confusing and time-consuming. Instead, Billups promotes preparing frozen meals to give to the family all at once. An efficient way to do this is to throw a “Pack-the-Freezer Party,” she says. That allows the caregiver to thaw meals as she needs them and gives her some choice in what the family eats each night.

Make sure you let people know gift cards are welcome. Provide a list of favourite restaurants to give them some guidance. (Gift cards are a great way out-of-town friends and family can help as well.)

Maintaining volunteer participation can be a challenge—supporting someone for three weeks while he recovers from knee surgery is very different from helping a spouse care for a loved one with ALS for five years.

One of the most important ways you can keep volunteers involved is through thank-you notes, Billups says. Handwritten thank-you notes, emails and even texts expressing thanks do wonders in making sure volunteers know what they did mattered. You can use the thank-you note to share comments from the family and provide updates about the person’s condition.

As the thank-you occasions mount, consider enlisting a volunteer to write the thank-you notes for the caregiver or take dictation for the caregiver. The important thing is to express your gratitude. Need help? Get tips on how to write a thank-you note here.

After your network has provided support for about a month, take time to check in with the care recipients to see how things are going. This is a good time to reassess what the family needs. Practical ways to help the family may change as the situation improves or worsens. You may need to update your volunteer opportunities.

This is also a good time to check in with volunteers. Send an update about the care recipient and encourage people to let you know if they want a new way to help. Their situations also change. They may be able to do more or need a less time-consuming task. And it never hurts to throw in a big thank-you here as well.

Creating a caring crew

When Elizabeth Billups friend’s husband was diagnosed with a terminal disease, her first question was, “How can I help?” She quickly realized even the best intentions can result in more burdens for the people you are trying to help.

During the next five years as she helped the family care for its dying loved one, she developed a system, The Carry Crew Concept, that outlines how to form and lead a team to assist the family without getting in its way.

To share what she learned, Billups wrote The Carry Crew Concept: How to Build Crews to Carry People in Hard Times and its companion workbook. When not caring for her three daughters, she provides workshops for churches or other organizations to help people set up their support networks. Billups, who lives in Colorado, blogs regularly about supporting families during difficult times.