Managing Friends and Family When You're the Primary Caregiver

Quick summary

From holding family planning meetings to running your own blog or website, you can do a variety of things to enlist the support of friends and family -- and keep them informed -- when you're caring for your parent.

Yet it's not easy managing people, and this is essentially what you're being called on to do -- on top of managing your mom or dad. Volunteer helpers need coordination and follow-up, as well as updates on how your parent is doing. So how can you keep this blessing from becoming a burden? Here are some suggestions that have worked for other families.

Hold a family meeting

A good starting place for organizing care is with your family. Consult with your parent about the idea as much as possible, including whom to invite. The goal is to gather family members together to review your parent's situation and needs, listen to his wishes, and hash out a care plan. It helps to have an agenda and someone in charge. What you're after is a rough outline of who can do what, when, and for how long. This will give you a sense of other resources you'll need to tap, including friends or paid help such as a visiting nurse, personal care attendant, money management service, or geriatric care manager.

Holding a family meeting is obviously much easier when people live close to each other. But even with geographically scattered families, you can arrange for a conference call or even a teleconference, though you'll need special equipment for this. Your long-distance phone company can help you with both. If your family members have computers, you can teleconference using the free program Skype and an inexpensive headset (if all your computers have cameras, you can even see each other). You can also find numerous free conferencing services by searching online using keywords such as "free teleconferencing."

Family meetings are an opportunity to share ideas and feelings, but they can become contentious. If your family has a tough time with collaborative decision-making, consider asking a leader from your place of worship, a professional family counselor, or a trusted neutral friend to assist.

Hold a meeting of friends

Sometimes the best parent's support group isn't made up of relatives but of friends or a mix of family, friends, and service providers. If this is the case for your parent, pull this group together for a care meeting as described above.

Look for a volunteer chief

Everyone knows people who seem born to run things -- you know, the school principal, ship captain, or supermom type. They have a knack for stepping up to the plate and creating order, no matter how great the chaos. And they often enjoy it. If one of your relatives or friends fits this bill and has offered to help, don't be afraid to ask him or her to be a volunteer coordinator, organizing inquiries and offers to help. But you -- and your parent -- will need to work closely with this person, keeping her posted on your parent's needs and schedule. You'll also need to make sure your chief has the information she needs.

A volunteer chief can double as an update captain, keeping people informed about your parent's condition. Or if that's too much work for her, you could offer the updating job to another willing soul. Ideally, you want a calm, measured personality to provide updates, not a worrier or a drama king or queen.

Hire a geriatric care manager

Many families are simply too busy, too spread across the globe, or too stressed out themselves to manage a loved one's care -- even with offers to help. One possibility is hiring a geriatric or senior care manager , whose specialty is researching and lining up all the services needed for your parent. Not everyone can afford a care manager, but if you can, it's perfectly acceptable to ask her for help managing friends and family. If the care manager takes other pressing tasks off your plate, it may free you to do more of this yourself.

Start a web page

It's increasingly common for families to have a web page dedicated to a sick family member or care-giving situation. A web page is a great way to provide medical updates and to list needs and wants. Most websites include various ways for site visitors to communicate with each other and with the person who is sick, through message boards, e-mail, or blogs. Myriad family-scale web design and hosting businesses are available -- start by searching the Internet or asking friends if they have any recommendations. Some social service agencies or hospitals offer free web hosting for patients with specific illnesses like cancer. Websites can be private or secure, requiring a password or special link to gain access, or open to the public. To maintain a website, someone needs to be responsible for doing the updates or feeding them to a professional web host.

Start a blog

Anyone can write their own blog or online commentary. This is a good way to provide updates on your parent or for your parent to provide updates on himself. Blogs allow others to respond and comment, but they aren't organizational or calendaring tools. Blogs can be private or secure, requiring a password or special link to gain access, or open to the public. A couple of free blog services are WordPress and Blogger.

Other computer technologies for group communication

Technology is continually advancing, offering exciting interactive tools to help people work together and communicate beyond a simple web page or blog. These options include:

• Online care-giving organizational services Much like online baby or wedding shower gift registries, these services let you personalize your care needs on a website, where friends and family can sign up for tasks and communicate with each other. This is an emerging field, with new options popping up all the time, and it can be tough to figure out what's out there. Senior organizations, hospitals, and social services agencies may have suggestions. Also check out these innovative sites with free services: Lotsa Helping Hands and CarePages.

• Wiki Wiki websites allow anyone to write for and edit the site from a computer -- like one big collaborative project -- whereas traditional websites are written and edited by one source or web host. The best-known example of a wiki is Wikipedia, the publicly written encyclopedia. Wiki websites can be a good way for groups to communicate with each other and the public, as long as everyone agrees on guidelines or expectations for writing and editing the site. (Even Wikipedia has standards and expectations. If you abuse them repeatedly, you get locked out of the site.) It's not always easy to maintain these guidelines, but wiki is a good way for people to work collectively -- for example, signing up for jobs on a calendar and leaving helpful comments. Wiki sites can also be made private or secure, with only a select group having access. For free wiki service, check PBwiki.

• Online calendars Severalfree online calendar services allow anyone with access (usually via a password) to view and edit a personal calendar. Some groups use these to organize care giving. Check out http://www.google.com/intl/en/googlecalendar/tour.html. Or you can create a free, restricted, or public Yahoo group where you and supporters can sign up for care-related jobs on a calendar, send group e-mails, and post messages.

E-mail groups and telephone trees

Lastly, regular old e-mail group address lists and telephone trees are still helpful and efficient ways of keeping in touch. Both of these options allow one person to contact a bunch of people in an organized way. E-mail is far easier, especially on the fingers, as you can send a message to a group of people at one time. But there's something to be said for the old-fashioned practice of calling people, even if it's time-consuming. Nothing is quite as comforting as hearing a real human voice.