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 a primary caregiver.
Yet it's not easy managing people, and this is essentially what you're being called on to do -- on top of managing someone's care. Volunteer helpers need coordination and follow-up, as well as updates on how the person in your care is doing. So how can you keep this blessing from becoming a burden? Here are some suggestions that have worked for other families and friends of patients.
1. Hold a meeting
- A good starting place for organizing care is with the person's family, his close friends, or both. Consult with the person you're caring for about the idea as much as possible, including whom to invite. The goal is to gather those close to him together to review the person's situation and needs, listen to his wishes, and hash out a care plan. (Sometimes the best support group isn't made up of relatives but of friends or a mix of family, friends, and service providers.) 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 other friends or paid help such as a visiting nurse, personal care attendant, money management service, or geriatric care manager.
- Holding a meeting is obviously much easier when people live close to each other. But even with geographically scattered families or groups of friends, you can arrange for a conference call or even a teleconference, though you may need special equipment for this. Your long-distance phone company can help you with both. If people in the group have computers, they 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 conference calls."
- Meetings to coordinate care are an opportunity to share ideas and feelings, but they can become contentious. If the group has a tough time with collaborative decision-making, consider asking a leader from the patient's place of worship, a professional counselor, or a trusted neutral friend to assist.
2. Look for a volunteer chief
Find someone to take charge of coordinating caregiving. Everyone knows people who seem born to run things -- you know, the school principal, ship captain, or supermom type. If a relative or a friend fits this bill and has offered to help, don't be afraid to ask her to be a volunteer coordinator, organizing inquiries and offers to help. But everyone will need to work closely with the "chief," keeping her posted on the person's needs and schedule. You'll also need to make sure the chief has the information she needs.
A volunteer chief can double as an update captain, keeping people informed about the person'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.
3. 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 the person in your care. 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.
4. Set up a web page
Keep everyone in the loop about the person you're caring for. It's increasingly common for caregivers to have a web page dedicated to their sick family member or friend. 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 small-scale web design and hosting businesses are available, or you can create a site yourself. If you need help with it, 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.
5. Start a blog
Anyone can write their own blog or online commentary. This is a good way to provide updates on someone or for the patient 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.
6. Other 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 caregiving 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 a 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. 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. Several free online calendar services allow anyone with access (usually via a password) to view and edit a personal calendar. Some groups use these to organize caregiving. 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. 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 many 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.