This month — November — is National Family Caregivers Month.
If you’ve been in any way assisting another adult with managing health concerns or life tasks, you qualify as one of the estimated 40 million family caregivers in the US.
Such help often starts out with small things, such as helping an older relative get to appointments or assisting with grocery shopping.
But it’s also fairly common for families to end up providing quite a lot of care. A 2015 report found that on average, family caregivers provided 24.4 hours of assistance per week, and 23% of caregivers were clocking 41 hours or more.
Many people find themselves eventually struggling with the caregiving. Most of us haven’t prepared or been trained to do this, and many people are unsure of where to get information, help, or support.
So in this article, I’ll share some of my favorite resources to make family caregiving a little easier.
Recommended Websites for Family Caregivers
Here are some of my favorite websites providing practical and high quality information, to help solve common problems related to caring for older relatives:
Family Caregiver Alliance – This well-established non-profit has lots of resources for families caring for a relative, whether you’re just starting the journey or are a long-time caregiver in need of support. Their tip sheets contain excellent information. Other features I recommend:
- The Family Care Navigator feature can help you locate public, nonprofit, and private programs and services in your area. This can help you find government programs, legal resources, disease-specific organizations and more.
- There is also a free “CareJourney” feature, which is designed to provide customized support and information.
Administration on Aging: Eldercare locator – Enter your zip code and this government website will list key local agencies that can assist you with a variety of issues. These include:
- Your local Area Agency on Aging
- Your local Adult Protective Services office (essential if you’ve been concerned about elder abuse or self-neglect)
- Any local agencies that assist with health insurance counseling
- Your local long-term care ombudsman, which is an important resource if you have a relative in a nursing home or other long-term care facility
- Low-cost legal services for older adults
AARP Family Caregiving – This section of AARP’s website offers a variety of articles and tools to help family caregivers. Some especially useful free resources include:
- Prepare to Care guides, available in multiple languages
- Training on health-related tasks (e.g. wound care, managing medications, and mobility) via the Home Alone Alliance project
- A “We Need to Talk” free program to help you assess an older person’s driving and discuss your concerns
Online Communities and Support Groups
It always makes me a bit sad when a stressed out family caregiver tells me how isolated he or she feels. Most of them haven’t gotten around to finding a support group, in part because they are so busy.
Fortunately, the Internet makes it easy to access a variety of online support groups, some of which are quite active and give good support. Here are a few that I particularly recommend:
AgingCare.com Caregiver Forum – This is one of the more active online caregiver forums. It’s a good source of emotional support and ideas for navigating common caregiving challenges.
Daughterhood.org – This caregiving site is spearheading local “Circles” to help caregivers connect.
SmartPatients Caregivers Community — This community is a partnership with Family Caregivers Alliance.
If you’re a family caregiver and you’re wondering which to try: I would say subscribe to one or two communities and give it a few weeks to see how it goes. Stick with the one that has a vibe or style that feels helpful to you.
I really do think it is essential to connect with a group of people facing similar family caregiving challenges. Online groups provide a safe space to vent difficult emotions, validation for your efforts, practical ideas on how to move forward and — perhaps most important — reminders to set some limits and tend to your own needs too.
To Find Expert Assistance
Family caregivers manage quite a lot on their own. But sometimes, it can be very helpful to consult with an expert. Here are some of my top recommendations to help you locate the kind of expertise families often need:
Aging Life Care Association – Formerly known as the National Association of Professional Geriatric Care Managers. This site explains how aging life care professionals can help with common age-related challenges, and provides a directory to help you locate a professional. These professionals usually have to be paid out of pocket, but they can be a huge help for families providing care at a distance, or just if you need extra help problem-solving.
National Elder Law Foundation – This is the only national organization certifying practitioners of elder and special needs law; NELF’s Certified Elder Law Attorney designation is itself certified by the American Bar Association. The site includes a feature to help you find a certified elder law attorney near you.
National Academy of Elder Law Attorneys – This is a larger non-profit organization and community of attorneys practicing elder law. There is a directory available.
How to Find Geriatric Care Near You – This BHWA article covers some options for locating a health provider who can offer healthcare adapted to the needs of older adults.
Two Excellent Reference Books to Have On Your Shelf
Both these books are WONDERFUL comprehensive resources, they suggest websites and organizations to contact for a variety of issues related to helping older adults. Great to have on your shelf!
Planning For Long-Term Care For Dummies, by Carol Levine.
How to Care for Aging Parents: A One-Stop Resource for All Your Medical, Financial, Housing, and Emotional Issues, by Virginia Morris.
Useful For Some Family Caregivers
This book isn’t relevant to everyone, but since I end up recommending it often when people write to me in the comments, I will post it here.
This book can be very helpful if you have an older parent who is demanding or is draining you or is otherwise stressing you out. It also addresses how to more constructively relate to an older person who complains a lot or is very negative. It is especially good for guidance on how to set some healthy boundaries and how to help without necessarily providing everything an older relative wants.
Coping with Your Difficult Older Parent: A Guide for Stressed-Out Children, by Grace Lebow and Barbara Kane.
What are your favorite resources for family caregivers?
Obviously, there are many more wonderful resources out there for family caregivers. There’s also the whole world of information and support related to subsets of the family caregiving experience, including dementias such as Alzheimer’s, navigating hospitalizations and health-related services, and more. (I’ll have to cover those in future articles.)
Still, I’d love to know: If you’re a family caregiver: what have you found most helpful, when it comes to getting the information and support that you need?
And what has helped you find services and resources, to address whatever age-related challenges you’ve come across?
Please post your suggestions below, I’m looking forward to learning from you!
Marybeth Guy says
I am so thankful to have found this site. My problem is my 88 year old mom seems to be having a lot of skin breakdown issues. She lives in an assisted living facility and has wonderful caregivers but for some reason she is developing skin breakdown wounds. We have her seeing a wound care specialist and she has a visiting nurse seeing her regularly but I’m wondering if any others have experienced this same issue.
I’m thinking maybe she needs more protein in her diet? To get up and walk more? To hydrate better with some kind of sports drink? I would appreciate any ideas anyone has.
Leslie Kernisan, MD MPH says
Glad if the site is helpful to you, but sorry if your mother is having persistent skin care issues. I am assuming they are pressure ulcers, which occur in the places where the body is weighing down on the skin; the sacrum and the heels are commonly affected. (If she’s having skin breakdown elsewhere, then it may help to evaluate further and consider dermatology referral.)
Wound care specialist and nurses are often quite helpful. They should be able to advise as to how to help her heal, and how to prevent future sores.
That said, if she keeps getting pressure sores despite this, then there could be nutritional component but it could also be that she’s reached a stage of advanced frailty, in which her body is just not going to be able to heal and maintain itself as it could before.
You may want to consult with her usual health provider and ask that person to talk to you about her overall state of health, whether she’s declining, and what to expect over the next 1-2 years. You could also ask if she has any underlying health conditions that might be affecting her skin’s ability to maintain itself. Good luck!
Jennifer Franz says
Is there a website to house information for my family to access? Things like medications, notes from doctor visits, different aspects of needs, etc?
For my mom, we need to monitor her health, but understand what is needed for her home and then proactively address future needs.
We all live in different cities/states so we need an organized location to house all these details.
Does such a site exist?
Leslie Kernisan, MD MPH says
Great question. I haven’t looked into the options recently, but I have worked with some families who are using Carezone, and I believe it’s still available. Let me know if you find something you like!
Another wonderful resource in my area was the Riverside County Office on Aging which had caregiver workshops and support groups. Check with your county office to see if they offer similar programs as they were invaluable and provided much needed support.
Leslie Kernisan, MD MPH says
Thank you for sharing. Sounds like this may have been your local Area Agency on Aging. These can indeed be very helpful. Readers can find their own local Area Agency on Aging via the directory at Eldercare.gov.
Leah Lippmann says
I am wondering if there is a good group calendar to share with everyone who I have to come care for/visit with my mom? As she cannot remember the schedule and often overlooks the appointments when booking other things or when friends come to visit.
Currently she has someone come at least 4 days a week, PT, speech therapy, a caretaker to take her out for several hours. I worry that they might overlap when rescheduling.
Leslie Kernisan, MD MPH says
Good question. I think you could use a Google calendar for this purpose. You could also try the calendar feature in Carezone. I think the catch will be getting these various professionals to look at your mother’s calendar when they are scheduling. You could perhaps tell them they need to be proactive about asking your mother if they can look at her calendar when they schedule a time. You will also need a way to get the new appointment into her calendar; if the professionals email you the appointment, you can add it to your mother’s calendar remotely.
Let us know what you figure out, if you can.
Michelle Allen says
This is a great list. I also recommend Jane Grossman’s A Bittersweet Season and Roz Chast’s Can’t We Talk About Something More Pleasant to many caregivers. Their blunt, honest recount of caring for aging parents offers some solace and wisdom.
Leslie Kernisan, MD MPH says
Thanks for the comment and for sharing these recommendations. Yes, those two books are very good, as are many of the memoir-type books about caring for older parents.
araceli relampagos florentino says