Essential Websites for the Daughterhood Journey
These days you can barely open up your internet browser without stumbling across a website for caregivers. On the one hand, this is great but it can also be a problem — There are so many websites with advice and information for caregivers that it can be hard sometimes to find what you need or to even know where to start.
So I want to share some of my favorite sites, organized by topic — in the hopes that you can get what you need more easily.
But before I do, please promise me that you won’t let all these websites and the information they provide make you feel MORE overwhelmed than you already feel. You don’t have to consume it all in one sitting and you don’t need it all right now.
Okay, ready? Here we go!
Alzheimer’s Association. I’ve already written about the Alzheimer’s Association’s Community Resource Finder, which I think is probably the best directory of providers that I’ve seen. This website is also probably the best overall resource for everything and everyone else — regardless of diagnosis. To top it off, It also has a 24/7 Helpline!
AARP’s Family Caregiving Website. You can’t write about caregiving websites without talking about AARP’s. They have experts writing about every conceivable topic including, for example, How to Avoid Losing Your Temper and How to Forgive Yourself When You Do. It also has a helpline! I should warn you, though, it can be a little challenging to navigate because of the constant screen shifts so common on websites that draw advertising dollars.
Caregiver Action Network (CAN). What I love about this website is that it allows you to browse advice according to whether you’re new to caregiving or have been a caregiver for many years. And, it also addresses challenges specific to long-distance caregiving and to working and caregiving.
Daily Caring. Daily Caring is a clean, lovely straightforward website with a comprehensive set of articles on topics ranging from Medicare and Medicaid to finding home care. I particularly like that each content piece is short and to-the-point.
Better Health While Aging. While I love all of the websites I’m reviewing here, this one’s a favorite. It’s written and maintained by Dr. Leslie Kernisan whose tools and blogs eliminate lingo and put everything in understandable terms. It’s like having a good girlfriend who is a geriatrician. Do yourself a favor and subscribe to her newsletter.
The American Geriatric Society’s HealthinAging.org is dedicated to providing an expert source of information about managing the medical aspects of aging. I love the tabs: “Find a Geriatrics Healthcare Professional” and “Making Your Wishes Known.” It also has some great, free downloadables such as one that can help you know which medications to avoid.
Hospitalizations and Transitions in Care
Next Step in Care. Next Step in Care is a program dedicated to providing practical advice and easy-to-use guides that help in the process of transitioning your parent’s care from one location to another (e.g., hospital to nursing facility). What’s extremely cool is that, at the top of the website, on the right hand side, there’s a little box where you can enter the location your parent is leaving and the location your parent is going — and then the website provides you with the information the program has developed for that specific move!
It’s treatment of hospital-induced delirium is a little thin so go to the Hospital Elder Life Program if you need more information on that topic.
One of the most fascinating things I’ve learned this year is that there’s a whole profession dedicated to helping your parents manage their money. It’s called Daily Money Managers (DMM). I’ve had the opportunity to talk to two women who operate DMM businesses and write blogs. So even if your parents don’t live near their offices, you can still get their advice. One of these is Eddy and Schein, based in NYC and LA. The other is Everyday Money Management, based in Maryland.
Dealing with Medicare
The Center for Medicare Advocacy has a lot to offer as a resource on Medicare. It explains topics like program enrollment, out of pocket costs, and coverage appeals. The site’s self-help packets walk you through Medicare rules and regulations. They can feel like a bit of a slog. But, that’s probably unavoidable, given the topic, so hang in there.
It’s no secret that Medicare is complicated. So complicated, in fact, that you may want to talk person-to-person with someone in a state health insurance assistance program. If you’re looking for Medicare supplemental insurance rate information, your parent’s state office of insurance regulation usually has a page that will provide you rates (again without having to deal with an insurance sales agent).
I am a HUGE fan of Roobrik. This is a beautiful, advertising-free website that delivers online decision tools help older adults and their families make difficult “health and care choices with clarity and confidence.” We tested one of their tools with Daughterhood.org subscribers and got very positive reviews. You should absolutely check this site out and share it with your friends.
Support and Inspiration
Maria Shriver’s website rocks. She’s proof that even a lifetime of success and accomplishment cannot protect you from the challenges of caregiving. Because of her commitment to service and her own experience caring for her parents, she devotes a lot of content space on her website to caregiving. Sign up for her newsletter and get involved in her projects, including The Women’s Alzheimer’s Challenge.
Caregiving.com I’m sure that everyone who visits this website is helped by it. Denise Brown is the pro and her beautiful site is a true community. It includes caregiver blogs, daily chats, free webinars, and it’s easy to navigate!
Liz O’Donnell, author of Mogul, Mom and Maid: The Balancing Act of the Modern Woman has shifted from writing about being a working mom to being a Working Daughter. She shares important news in her weekly roundup and interviews experts in the field. Download the Mogul, Mom and Maid Manifesto!
I would be remiss if I didn’t mention Paula Span’s work on the New Old Age blog which runs in the NYTimes health section. I’ve learned so much reading this blog. I highly recommend all of her work.
Concern and a Plea
My concern is that everywhere I turn I see eldercare.gov cited as a top caregiver resource. And, that’s actually a shame because it’s an antiquated, non-intuitive site that requires users to have a lot of expertise in order to understand search results.
My plea is for the U.S. Administration on Aging to overhaul this resource. And, while I’m making suggestions, it would be really great if, in its materials for caregivers, the Centers for Medicare and Medicaid Services (CMS) would either stop referencing www.medicare.gov/caregivers, which is a broken link, or would fix the link!
To everyone else I mentioned above, a hearty and warm thank you for your work.
Now, readers — tell me about the online resources you love or wish you had but don’t!
Some really great resources, Anne, and several I’ve never heard of. I would add TheCaregiverSpace.org, which offers a great support network and valuable information, and The Caregiver’sVoice.com, which focuses on Alzheimer’s issues. Very excited about all the progress you’re making!
Hi Judith — I like thecaregiverspace! Naturally, I discovered it after the blog was done and I didn’t have time to really dig in but it’s on my list to learn more about.
I love this one – as a hospice nurse I recommend it often. Thanks for this valuable post – now I will use it, too.
So glad to hear it. Please let me know your thoughts about any of these resources as you use them.
oops – forgot to link it! http://www.alzheimersreadingroom.com/
Right! Can’t wait to check this out too.
What a fantastic helpful list Anne! I am truly honored to be included in this company, and SO glad you find the articles at Better Health While Aging useful.
I already knew about DailyCaring and some of the others you mention, and look forward to learning more about the others.
I might add Howard Gleckman’s column to your list. I have learned so many interesting things about long-term care policy from it, and really enjoy it.
Re Eldercare.gov, agree it needs an overhaul. However it’s a decent way to find contact info for the local area agency on agency or adult protective services…or do you know of a better locator?
Thanks for all the work you do.
Thanks so much for all that you do. You’ve been an inspiration for this work.
Thank you so much for the shout-out, Anne! I so appreciate it!
Great list and I would add Caring.com, particularly given your feedback about the Eldercare.gov directory. Caring’s Senior Care Directory of local providers is very user-friendly, nationally comprehensive, and includes consumer ratings and reviews. You’ll also find it linked from the AARP resource you cited. It’s one of the reasons three million family caregivers and older adults visit Caring.com each month — that and the expert articles, Q&A, and online support groups.
Hi Denise — Thanks so much for mentioning caring.com. I am not comfortable recommending websites with care locator tools if I don’t understand how the business model influences the search results. But, I like a lot of things about the website and would be delighted to learn more about how better how the revenue model works. Message me separately and let’s set up a time to talk!
Hi Denise — Thanks so much for mentioning caring.com. I am not comfortable recommending websites with care locator tools if I don’t understand how the business model influences the search results. But, I like a lot of things about the website and would be delighted to learn more about how the revenue model works. Message me separately and let’s set up a time to talk!
Hi Anne, In response to your comment: I’d be happy to talk with you further and Caring.com also publicly publishes it business model: https://www.caring.com/about/caring_com_business_model You’ll also see in the Senior Care Directory several filter options for search results, including one driven by reviews (which are in no way influenced by the website’s advertising).
The LLO Ka are quite difficult to see. Could you choose a different color th next time.? Thank you.
Super list delivered with humor and insight! I’d like to add one more item to the list, if I might. I help maintain payingforseniorcare.com. For the last seven years, our family has researched and largely written the site. Its advertising free and it strives to be a plain language and comprehensive catalog of public and private options for making care affordable.
Hi Miguel — Thanks so much for flagging this one for me. I look forward to checking it out more thoroughly!
Such a great summary! Can’t wait to subscribe to a few I don’t currently follow. I invite your caregiver readers who are overwhelmed and stressed and know they need to get healthy but are even more overwhelmed by this thought to follow my blog Savvy Sandwicher. I don’t just encourage self-care but show you how. I’m living it too. I work full time while raising two teenagers and assisting my mom.
I love, love the name Savvy-Sandwicher. I’m surfing around on the site right now and I love it too! Congratulations on such a beautiful site and easy to read blog. We need more of you out there!
I have found great value with CareZone.com even though it is relatively new, they provide a variety of assistance including medication tracking & refills, calendars to assist with scheduling, team wide & confidential communication, and numerous other features.
Thanks Linda! There are so many websites out there that also offer tools like what you’ve described. I feel like I don’t yet have a good handle on them all (except roobrik) so really appreciate your recommendation. Will check it out!
I would like to invite caregivers and families to http://www.caregiverbasics.net –
I would add Senior.com as well! Free shipping on all DME products and great articles. Thanks for this resource!
Also check out caregivinganswers.com as well. Caregiver questions answered by professionals in the industry.
Great work, Anne on pulling together this list of resources. As a member of workforce that assists providers of various health care at home services, I look forward to adding these to my ‘bank’ of info. A few other web resources that I have found helpful and referred to individuals that also work within the home health care community and provide support to caregivers are:
National Institute on Aging at https://www.nia.nih.gov/
Their A-Z Topics listing is very good and the website also provides some information in multiple languages. The caregiving links to the NIH website are https://www.nia.nih.gov/health/publication/caregiving and
The NIH ‘AgePage’ provides information on what to look for in being able to trust information found on the web
For resources related to caregiving of individuals within special demographics such as disabled, veterans, Native Americans… I have found these to be very helpful; Individuals With Disabilities at https://www.disability.gov/
Veterans Administration (VA) Caregiver Support offers good variety of caregiver supports for veterans including Peer Support Mentoring Program, Caregiver Toolbox, VACG Support Phone Line, Well-Being for Veterans. http://www.aging.com/
Native American Programs and Indian Health Service
I have also utilized a video library from Morning Side Ministries known as mmLearn Caregiver Videos which can be accessed at http://training.mmlearn.org/video-library
And finally an article on Woman’s Health Blog – Caregiver Changed Me: One Daughter’s Story
Thanks again, Anne, for all that you do within this field of caregiver awareness and support. I am looking forward to being a part of this group within my local area.
Hi, Anne: This is such a valuable list. I wish my parents would have agreed to work with a Daily Money Manager. They were totally opposed to doing that. Families who can overcome objections to ‘letting a stranger in to my personal life” can be very well served and supposrted by thises remarkable professionals. I often suggest DMM’s to friends who are looking for help.
I have three other resources to add:
http://www.leadingage.org for consumer information and resources from the not-for-profit aging services community
http://www.aginglifecare.org the website for the association of elder care manangers. These are the go to experts when people have family members living in different parts of the country and need advice on eldercare where their elder family members reside.
http://www.nextavenue.org an AARP website with very useful information for baby boomers who are managing their own aging as well has helping older family members.
Don’t want to blow my own trumpet but Caron Cares offers advice and information for anyone caring for the elderly. Drawing on over 20 years experience, I write with passion and insight plus I am an active campaigner for the rights and safety of the elderly. This award winning blogger is seen as a “go to” when issues need to be raised with people who can effect change. Apart from anything else… Caron does care! http://www.caroncares.co.uk
Great resource. Thank you. You can find a nationwide comprehensive list of all licensed senior communities and care providers and more at http://www.NewLifeStyles.com
I admit it. I started clicking on links and found myself adrift in “Where the hell am I?”-land, aka the Island of Overwhelmed Caregivers. I’m finding that I have to be hyper-vigilant about pacing myself since I unexpectedly became the guardian of my 65-year-old cousin with chronic mental illness 6 months ago. These resources are great, and will really help me in uncovering information about my cousin’s benefits, keeping track of medical information, etc. Adding this responsibility
on top of caring for my 90-year-old mother is daunting, to say the least, not to mention keeping an eagle eye out for my in-laws who live out of town and have had serious health issues during this same period.
Thank you for this site!
It is hard to know what to do or where to turn when you have a loved one that needs care. Great list of resources, thank you for sharing.