Coordinating Care

6 Tips for Coordinating Care With Friends and Family

Organizing family and friends for caregiving

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.

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.


Find someone to take charge of coordinating caregiving

Look for a volunteer chief

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.

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.

Keep everyone in the loop about the person you're caring for

Set up a web page

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.

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 c omment, 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 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 a llow 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.


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over 4 years ago, said...

Giving care to another person is not new. It starts the minute a baby is born. When people age, and if their health declines, they can become less independent and more dependent on family to provide care. Care giver is the best way to help us.

over 4 years ago, said...

my adult daughter survived a horrible accident in oct2010. i moved her in with myself and my husband in jan2011. her new regular gp ordered home health care for her. it included visits from rn & lvn for wound care, 3X wk personnal care person for bathing & hair care & hygene, 2X wk ot and 2X wk pt therapy. about 6mos ago her new orthopedic surgeon ordered the same but omitting pt. there is no lvn that comes out, only rn every 2 weeks. bath person comes out only to wash her hair and wash her foot on injuried leg that was turned downwards and washes back on request. last wk the personnal care person asked my daughter to sign a NEW form, my daughter asked what it was for. it seems to be a form to say that there was not a primary care giver in the home--i was sitting on the couch next to my daughter at the time. what is going on. the home health care office has not been able to answer my questions at all. what was this mean? is the home health care business charging MCD to be the primary care giver of my daughter? who do i call? how can i help protect my daughter? txs for the help, monismom

over 4 years ago, said...

I have been sending updates to my stepfamily (8 children and an exwife) for 4 years now. My husband is in late stage dementia now & was recently hospitalized at which time It was necessary to follow his directive of no feeding tube. He did come through that particular ordeal and was able to recover to some degree, but is slowly going downward. It was explained to me that this will be the final progression of his desease whether quickly or over a long period of time. One of his children through quite hurtful emails accused me of trying to murder his father because of the withholding of feeding tube. The nursing home has assured me he will always be offered food and drink and that he will get the best of care until the final stage at which time he will be made to be as comfortable as possible. This is the only son who has been in denyal about his father's ultimate ending and believes he can with therapy, bring his father back to normal. No amount of reasoning will sway him. I have subsequently stopped sending updates on their father due to the mental upset and hurt and anger i am feeling from his horrific emails. I informed the family of this decision, at the urging of my counselor. However, I am filled with hurt and anger over all these negative reactions from my stepchildren. They live 3 hours away , but do come visit their father as they are able. How do I get past this anger I am experiencing from their insensitivity of my part in taking care of their father? They believe their visits are making him better when only the opposite is actually happening. I am the one who deals with all the duties of a regular caregiver. Why am I stuck in this mire of anger and how do I get past it?

almost 5 years ago, said...

My name is Colleen and I live in Wisconsin. I have been caring for my mother who has advanced alzheimers for about 9 years now. I have so many wonderful memories growing up. We lost my dad nov 24 2010 to leukemia...the day before thanksgiving and now my mother will be leaving us close to Christmas this year. It is so hard to watch your loved one going thru the dying process! You want to keep them with you but you also what them to be at peace!! I was sitting by my moms bedside this morning at 2:30 am after I had just given her more meds to keep her comfortable. And all I could think of was how proud I am to be her daughter!! Mom I love you more than you'll ever know!!! <3

about 5 years ago, said...

I have been caring for my mother for 6 1/2 years. My husband passed away 7 1/2 years ago. I put my house on the market one year after his death and sold it the next day. Happened so fast that I didn't have too much time to really figure out my options. That same day Mom had a minor stroke and options were to put her in a nursing home or move in with her and take care of her. It was OK for a couple of years. Now she is blind, deaf, moderate dementia and 97 years old. I do get aide help three times a week, but they change constantly and both she and I like consistency. I have two sons locally and two daughters very far away. I don't like to bug them because they also have their lives and families and jobs to take care of. My brother in another state is - useless - totally. He informed me a couple of years ago he didn't think he would be able to make her funeral. His wife who hasn't seen Mom in about 15 years wrote her a letter reminding her to be careful as I might steal all her money. I have great friends and my sons are very supportive and I have an especially great sister-in-law who went through the same thing with our mutual mother-in-law. I call her several times a day as she is half way across the country and she somehow always is able to make me laugh. God bless her. It is nice to be able to sit down and write out some of my frustrations and have the re-enforcement that I am not alone. I would love to attend a caregivers forum, but again, it gets expensive to have an aide with her. My sons are great when they are available, but that's not always possible.

almost 6 years ago, said...

My husband and I are his mother's caregivers. He has 5 siblings and none of them feel they can take their mother for one reason or another. Some have a different idea to share with us about her care, but do not really get involved. One would like her to stay in the back of his house and pay too much rent, and also help him with his expenses, while not taking care of her. It is so sad to me to see how indifferent some of them seem toward their mother. She is in moderate stage of alz., and has dementia. She is so confused mostof the time,and asks the same question or makes a statement over and over. I am the one who has the care of her most of the time, and it can be rather exhausting, but, I do not trust the others to take good care of her. When she came to us her hair was dirty, and this was on Christmas Eve. Thanks, and God bless

almost 6 years ago, said...

Involving the person is key, as they often lose so much independence that it helps to allow them to make any decisions they can.

almost 6 years ago, said...

I've been the sole caregiver of both my parents for 6 1\2 years now. Suffered through one breakdown from caregiver burnout a few yrs ago, and I've been dealing with a diagnosis of breast cancer. Went through my radiation treatments without any help. I have to admit, a part of me is a bit bitter right now. But life does go on, even after finding another lump. It never gets easier as I'm learning through all of this. Don't ask me to start doing meetings, or trying to organize something to bring in other members of the family. I've asked for help, received what they offered, and now I'm too tired and exhaused to start begging for it again. One single person can only do so much. Not sure where my life is heading right now.

over 6 years ago, said...

I am my husband's SOLE caregiver and am on duty 24/7. Everybody knows of our situation and when i ask for help i don't get it. nobody wants to deal with his alzheimers and constant repetition, so they stay away. that is including his son and his family who live only 25 miles away. If i did all that you say, i would be having a meeting with myself. and we can't afford to pay for care. i am struggling to save our house. there is no extra money for anything.