“There are only four kinds of people in the world — those who have been caregivers, those who are currently caregivers, those who will be caregivers and those who will need caregivers.” ~ Rosalynn Carter
Carter’s quintessential quote says it all. Caregiving impacts every single one of us at some point in our lives.
I’m 32 years old. In the span of my three decades, I’ve been under the care of my parents; I’ve taken care of my sisters (as the oldest of five, I did a lot of free babysitting); in my teen years, and as a college student, I was paid to provide child care; I worked as a paid caregiver in an assisted living community in the summers between college semesters; and most recently, I was a long-distance caregiver for my grandfather, who died of Alzheimer’s in 2009.
Rosalynn Carter knew what she was talking about, didn’t she?
- 65.7 million caregivers make up 29% of the U.S. adult population and 31% of all U.S. households,
- 3.9 million care for children only,
- 48.9 million care for adults only, and
- 12.9 million care for both.
Think about it: more than a quarter of the U.S. adult population has caregiving responsibilities. It’s a staggering number.
Couple that with our aging demographics (data compliments of the Administration on Aging) http://www.aoa.gov/:
“The older population–persons 65 years or older–numbered 39.6 million in 2009 (the latest year for which data is available). They represented 12.9% of the U.S. population, about one in every eight Americans. By 2030, there will be about 72.1 million older persons, more than twice their number in 2000.”
Now, consider the number of wounded soldiers returning from war zones, from a recent New York Times article http://www.nytimes.com/2011/01/08/world/asia/08wounded.html:
“Nearly 5,500 American troops were wounded in action — more than double the total of 2,415 in 2009, and almost six times the number wounded in 2008.”
We know that families are smaller than they used to be. We know that people are living longer than before, often with more complex care needs (i.e. Alzheimer’s, cancer, heart disease, etc.). We know that, already, there is a caregiving shortage.
Where will the support come from for “those who will need caregivers”?
Now is not the time to panic, but it is certainly time for action. Because as former First Lady Rosalynn Carter said, we’re all going to be/need caregivers.
For more on the caregiving numbers:
Caregiving 101: Basic Resources
For the 31% of Americans already in the throes of caregiving, the care needs in front of you are likely more pressing than these frightening figures. There is little time to ponder the fact that we’re on the cusp of a crisis, although a back-up plan may be harder to develop given this gap. However, if you are currently a caregiver, you’re probably already feeling the pinch that is a direct result of this stressed system.
Take a deep breath.
These are the facts, but thankfully, there is hope, help, and humor for those wearing the caregiver badge. Although often cited as a thankless job, caregiving is immeasurably rewarding. You can’t put a price tag on something so big, no matter how scary the black and white numbers may be…which is why so many people do it, despite the odds.
Consult these comprehensive websites for a broad range of practical and detailed information on caregivers & caregiving:
- http://www.caregiver.org/caregiver/jsp/home.jsp – The Family Caregiver Alliance is the self-titled “public voice for caregivers” and offers information, education, resources, advocacy and services to those caring for family members.
- http://www.thefamilycaregiver.org/ – Educate, support, empower, advocate – these are the roles and goals of the National Family Caregivers Association.
- http://www.aarp.org/content/aarp/en/home/relationships/caregiving-resource-center.html – Leave it to the good people at AARP to compile an outstanding resource center dedicated to caregiving, covering everything from legal issues to housing options to end-of-life care.
- http://www.nlm.nih.gov/medlineplus/caregivers.html – MedlinePlus is a partnership of the U.S. National Library of Medicine and the National Institutes of Health. At this caregivers landing page, visitors find a lengthy list of links (in various categories) on all aspects of caregiving.
- http://www.familycaregiving101.org/ – Find answers, assistance and advice at this well-organized site, which includes a message board and the top 10 most-frequently-asked caregiving questions.
- http://www.caregiversmarketplace.com/ – Caregiving can be expensive, even if you’re doing most of the work pro bono. Get cash back on products for nutrition, bathing, skin care, aids to independence, and more at this site. Download the free application form or call toll-free for more information.
- http://www.nia.nih.gov/Alzheimers/Publications/caregiverguide.htm – ADEAR (Alzheimer’s Disease Education & Referral Center), part of the National Institute on Aging, offers a guide specific to Alzheimer’s caregiving, including sections on communication, bathing, and activities.
- http://www.seniorsforliving.com/blog/2010/11/02/the-alzheimers-resource-guide/ – Check out our Alzheimer’s Resource Guide for information on this unique type of caregiving.
The Elements of Caregiving: Creating an Action Plan
“Caregiving” is such a broad term, as is “caregiver”. Within each category, the range is great: from paid/ professional caregivers, to family caregivers who are “on the job” 24-7, to long-distance caregivers, who may be thinking of their loved one 24-7 but cannot actually provide direct care services on a regular basis…and countless others in between.
This variance in the type of caregivers speaks to the range of caregiving itself. Some caregiving situations are more intense on the direct care service side of things (feeding, dressing, bathing, wound care), some scenarios are more intense on a consultative/administrative side (as in the case of many long-distance caregivers, who may be providing assistance with the paperwork, legal, or logistical side of things), and still other settings are more intense on the emotional support side of things, as may be the case for a terminally ill care recipient whose physical care is managed but who is struggling with impending death.
Many who are reading this guide probably find themselves in all of those circumstances and then some. No two caregiving cases or caregiver profiles look the same, but there are general principles that can be applied and adapted to meet the needs of your care recipient. From these basics, you can develop your own action plan.
Coordination – Medication reminders + doctor’s appointments + trips to the grocery store + laundry cycles + bathing + bedtime + meals = caregiving requires coordination. The following FREE resources are a great way to manage the madness, all the while encouraging an “all-hands-on-deck” approach.
Advocacy – Whether you are caring for your loved one at home or visiting them at a care facility or any other health care setting, advocacy is crucial. Unfortunately, health care professionals on the whole do not have much time to spend with your loved one, so the burden is on the caregiver/patient to know what questions to ask, take spurious notes, watch for red flags, speak up when something doesn’t seem right, prevent abuse.
- For professional caregivers: http://www.directcarealliance.org/
- For family caregivers: http://www.caregiver.org/jsp/content_node.jsp?nodeid=389 and http://www.nfcacares.org/caregiver_advocacy/
Respite – Crucial to caregiving success is the oft-overlooked & sorely underutilized resource known as respite.
- ARCH National Respite Network & Resource Center: http://www.archrespite.org/home
- The Intentional Caregiver (read my recent guest post there): http://takingcareofthefolks.com/respite-care-the-act-of-looking-back/
Education – Knowledge is power. Go to classes, listen to podcasts, read books, attend seminars and training sessions – whenever you can, power up for the certain days to come when you’ll feel powerless. Consult these sites for instructional information.
- Family Caregivers Online: http://www.familycaregiversonline.net/
- American Association for Caregiver Education: http://www.caregivered.org/
Geriatric Care Managers – Work with these trained professionals if the labyrinth of caregiving options becomes so overwhelming that you don’t know where to begin, or if you and your eight siblings can’t agree on a care decision for Mom & Dad. Connect with community resources as well, via your local AAA (Area Agency on Agency).
- National Association of Professional Geriatric Care Managers: http://www.caremanager.org/
- “Answers on Aging” from the National Association of Area Agencies on Aging: http://www.n4a.org/answers-on-aging/?fa=caregiving
Inspiration – There will be days when you just don’t have the energy, patience, or desire to face the caregiving responsibilities ahead of you. There are situations where, for any number of reasons, a caregiver does not have a good relationship with the care recipient. Sometimes, you need more than just extra hands or additional supportive services. Let these uplifting sites serve as your caregiving muse.
Virtual Assistance – Many sites offer online support groups/forums/message boards for caregivers (and sometimes, care receivers) to connect with others near and far. Participate in webinars, get a free personalized care guide via email, have experts answer your caregiving questions, read blog posts written by caregivers, and do/find so much more on these outstanding sites.
Information – Sometimes, too much of it is not a good thing, but when it comes to something as complex and dynamic as caregiving, it never hurts to get more information.
- Carebuzz: http://carebuzz.com/ (There is a section for caregivers and one for care receivers.)
- Transition Aging Parents: http://www.transitionagingparents.com/
Needs Assessment –At some point in the caregiving experience, you will need to add more people/services to the equation, both for your care recipient’s health & well-being and your own. Caregiver burnout is a major issue that can really throw a curveball into a caregiving situation. Be proactive by creating a back-up plan; prevent burnout by getting the help you need before you run out of steam (also, refer back to “R” for respite).
- Eldercare Locator: http://www.eldercare.gov/ (check out the Caregiver’s Corner on the right side of the page)
- Evaluating the Caregiving State of Affairs: http://www.caregiving.com/2011/02/evaluating-the-caregiving-state-of-affairs/
Grief – Eventually, “those who are currently caregivers” move to the “those who have been caregivers” category, which ushers in a necessary yet painful period: the grief process.
- Grief & Bereavement Resource Guide: http://www.seniorsforliving.com/blog/2011/01/27/grief-bereavement-resource-guide/
- Caregiver’s Section on Hospice.net: http://www.hospicenet.org/
C-A-R-E-G-I-V-I-N-G: it’s a tremendous responsibility, a complex undertaking, and a rewarding journey all at once.
So, we’re back to Rosalynn Carter’s timeless words: “There are only four kinds of people in the world – those who have been caregivers, those who are currently caregivers, those who will be caregivers and those who will need caregivers.”
Which one are you?
If you’ve been a caregiver: Please share your caregiving story with others. Lend support/be a mentor to someone who is a caregiver now.
If you’re currently a caregiver: Please bookmark or print this guide. Reach out for help so that you don’t burn out. Don’t forget to take care of yourself!
If you need a caregiver: Please be aware of all your options and clearly communicate your caregiving preferences to all parties involved.
And for those who will be caregivers: Know that countless others have gone before you on the rough road ahead. Look forward to the experience without fear by drawing on their wisdom and learning from their successes and failures. Plan ahead as much as you can.
- Michelle Seitzer
* This is by no means an exhaustive resource. For the benefit of our readers, please add additional sites/resources that you have found helpful. We welcome your feedback!