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.
Also, in the past 5 years each of my siblings have visited Mom only 1 time. We always had to go to them if Mom wanted to see them. Bottom line is - trying to involve the family is only a dream in my eyes.
I have been my Mom's caregiver for the past 5 years and had attempted numerous times to involve my 6 siblings, 2 of which live over 800 miles away and the other 4 are within 2 hr drive. And non of them seem to care or show interest. I had to put Mom in a Care Ctr 4 months ago due to mid stages of alzheimers adding to her multiple illnesses - diabetes, CHF, Hrt attack recently, CML-Leukemia, IBS, eye site deterioration, among more, pluss pharmacy of meds that she is on, and I have a full time job. With the alzheimers getting worse it was unsafe for her to be left alone during the day and couldn't afford a full time nurse or adult daycare so the alternative is the 'Care Ctr/Nursing home. I was told by a non-family member that my siblings all think I'm exagerating Mom's condition even though they have all seen the doc. notes. The only help that I can count on is one of my daughters whom has been a blessing to me. I refuse now to call and update my siblings about Mom's condition and have created a caringbridge site for her that they can read. If they call me for updates I am happy and cordially tell them but alway get the same feeling that they doubt me. So including/tryint to involve family doesn't always work. Mom's siblings are more understanding and concerned that her own children. I have grown tired of trying to include them in Mom's care and getting them to visit her or show some compasion for her. Mom was a wonderful mother to us so they have no reason to be so cold hearted. I on the other hand feel very fortunate to be so close to Mom and share in her end of life experiences in trying to make them easier and happy.