Helpful Resources for Caregivers

"We hear over and over again from caregivers how difficult it is to find caregiver resources when needed." - Dr. Trivedi

Blog 6: A review of caregiving resources

We hear over and over again from caregivers how difficult it is to find caregiver resources when needed. There is no centralized place for resources, there is a lack of clarity of their appropriateness, and it is not clear which are reliable. This is of course made more complicated because caregivers of cancer survivors have limited time and mental energy to do an extensive search. So, for this post, I am compiling some of the most trusted resources that can help you with caring for yourself, coordinating care, and connecting with others who may be dealing with the same stresses. I have highlighted cancer-specific resources where possible, but at the end, I provide links to some of the major organizations that have general caregiving resources.

I. Cancer Caregiving Resources: There are many places to get information on what it is like to be a caregiver, how to navigate the journey, and how to care for oneself while being a caregiver. Some websites have developed videos that can be very helpful in your journey. These websites often include downloadable materials such as managing caregiving tasks, including:

  1. American Cancer Society
  2. National Cancer Institute
  3. Cancer.net. This website provides patient and caregiver information approved by the American Society of Clinical Oncology. There are many caregiver related resources on this website, which can be accessed by using the search tool. Their main resource can be found here.
  4. Organizations that offer cancer support, including financial and long-term care. You may be looking for what are called home and community-based services. These services help patients of serious and chronic illness in their homes, and can range from basic needs such as meals and transportation, to medical help including in-home care and respite care. These resources vary by city, county and state. Since it is impossible to be comprehensive, I also recommend that you speak with a social worker if available to you.

II. Support Groups and Online Communities: Local support groups are best identified via your local hospital, social worker, community spaces such as libraries, or calling the county health departments. A few places to get you started are shown below: 

  1. Community Services 
  2. SmartPatients. This is an online community for patients and caregivers. You register with your email and share which disease you are managing, and are placed in the relevant community.

III. Care Coordination: I know that many of you in the survivorship caregiving phase are actively managing the health of your loved one. Family members or friends often wonder how they can help. There are online tools that can help you coordinate daily tasks including meal drop offs, pick up kids, and taking people to doctor’s appointments. You can create a calendar of the help you need, and people can sign up to help you.

  1. AARP compiled a list of apps to coordinate care
  2. Caring Bridge 
  3. Lotsa Helping Hands

Finally, there are many general caregiving resources available through Family Caregiver AllianceNational Alliance of Caregiving, and Caregiver Action Network which may be useful, too. 

I hope this overview gives you enough opportunities to get the care and help you need.

Until next time,
Ranak