Your connections to others you care about
When you or a loved one becomes physically or mentally infirm
Home Topical Index to all subjects
The majority of us will either need extended caregiving before we die, or will act as a caregiver to someone else or both.
In the caregiving role, perhaps we can provide full care by ourselves, depending on our own abilities and time availability, and depending on the severity of our loved ones infirmity. If that doesnt work, we might still be able keep the infirm loved one at home if we hire some part-time help. Sooner or later, placement in an assisted living facility could be needed, perhaps a memory care unit, and eventually maybe a nursing home, or a hospice.
Fortunately, there are many options, though they mostly are quite expensive. This section directs you to sources that can help you decide what is needed, where to get it, how to pay for it, and how to make sure it is working for you.
And we also talk about taking care of the caregiver, because this is a difficult job even under favorable circumstances. If you are going to have staying power in that role, expect to need support, and dont turn it down when its available. You need to save your strength!
Caregiving relates to other areas of Love:
- The essential virtues, because being caregiver to someone who is much in need, and especially someone whose memory may be gone or whose personality has changed, can put our forgiveness, compassion, respect, and gratitude to their most severe test.
- Intimate relationships, because one or another of an intimate pair will often end up being caretaker for the other, if they stay together long enough. And because the absence of such a helper will make care both more difficult and more expensive to obtain.
- Family, because it is not unusual for parents, children, and siblings to be involved in caregiving as either givers or receivers of care, or as partners with you in your own caregiving efforts.
- Friendship, because sometimes friends even more than family come through when someone is disabled.
Caregiving relates to other areas besides Love:
- Spirit, because providing care for those most in need is one of the central tenets of most religions as well as most secular concepts of morality.
- Purpose, because the increasing need for caregiving in our society already underway, but expected to accelerate in the next few decades will create enormous opportunities for both paid and volunteer work in that field. And because caregiving itself is an important purposeful activity, even when done in private.
- Avocation, because when you are giving or receiving intensive care, you are constrained in what you can do for pleasure, yet it is all the more important that you continue to have outlets for enjoyment.
- Security, because the need to receive care or to give care is likely to impair ones ability to earn money, while professional care services are enormously expensive, and sometimes completely drain a familys financial resources.
- Health, because the need to receive care indicates a failure of health, which can be staved off in many cases by good health habits. And because caregiving itself can impair health, and lead to both physical and mental problems for the caregiver.
Caregiving Sub-Topics and Resources
- Free resources:
- When You or a Loved One Can No Longer Live Alone, from RetirementWorks, outlines the main options you have (staying put, moving somewhere easier to get around in, moving in with someone else, assisted living, or a nursing home), the pros and cons of each, and where you can find additional resources (rating = A+).
- The National Caregivers Library is a great go-to resource for information on all aspects of caregiving medical, emotional, legal, and financial about caring for yourself, finding government resources, dealing with transportation issues, and so on (rating = A+). Caring Connections offers clear, well-organized information on all stages of caregiving, from planning ahead through grieving for a loss (rating = A). Also see Elder Care Link (rating = A), "Care Conversations" (rating = A), "Caregiving.com" (rating = A), the Family Caregiver Alliance website (rating = A), and the AARP Caregiving Resource Center (rating = A) for help on a wide variety of issues. If you are caregiving for someone on Medicare and you are not familiar with it yourself, Medicare Information for Caregivers gives you a great start (rating = A)
- Your Guide to Choosing a Nursing Home or Other Long-Term Care, from the U.S. government Medicare website, offers a 6-step method of analyzing what kind of help you need and where to get it (rating = A).
- The National Association of Professional Geriatric Care Mangers can help you find a geriatric care manager i.e., someone qualified to help find professional caregiving services in a certain locale. Such a person is an invaluable resource if you need to take care of, say, a parent who lives far away, or even someone who is local, but you just dont have the time or ability to do all the research and then monitor the ongoing quality of care yourself (rating = A+). Oftentimes, care managers help you find an assisted living facility or nursing home at no charge to you, because the facility pays for the service. But if you want a geriatric care manager for ongoing supervision, you will need to pay for that. The Caring from a Distance website can give you additional advice and support, and help you locate services in specific areas (rating = A).
- The U.S. Administration on Aging website can help you understand other benefits you or your family member may be eligible to receive. Their Eldercare Locator (which you can also reach by calling 800-677-1116), will tell you what agencies provide services nearest to you (rating = A-).
- SeniorHousing.net can help you find all kinds of housing options, including independent living, as well as continuing care retirement communities, assisted living, Alzheimers care, adult day care, short-term respite, nursing care, and others (rating = A-).
- End of Life: Helping with Comfort and Care, from the U.S. Dept. of Health & Human Services is a very good place to start if you are dealing with end-of-life caregiving. It also refers you to a large variety of other organizations that can provide support in more specific areas (rating = A).
- The National Long-Term Care Ombudsman Resource Center can link you with consumer advocates in your area, if you have problems with professional care facilities that you are using (rating = A+).
- Caring for the caregiver is an essential part of caregiving. Caregiving is physically and emotionally draining, and if the caregiver falters, the person needing care suffers, too. For advice, support, and networking in this regard, go to the National Caregivers Library page on Caring for the Caregiver (rating = A-), and HelpGuide.org's Caregiving Support & Help (rating = A). The Well Spouse Association has local support groups nationwide, and will help you set one up if there isn't already one near you (rating = A).
- The opposite side of the coin from caregiving is elder abuse, and the two often go hand in hand. For more info and resources on elder abuse, visit the National Center on Elder Abuse website (rating = A+).
- Other resources:
- If you need hand-holding through this entire process, or just want someone to do it for you, CareScout provides such services, for a fee (rating = A).
- If the person needing care has his or her own house or apartment, shared housing is an option to consider. Under this arrangement, someone else moves in usually rent-free and in exchange helps with household needs, transportation, or whatever else may be required. The National Shared Housing Resource Center can tell you more about this concept, and help you find local agencies that assist in matching people up (rating = A).
- For temporary, rehabilitative services, you can Find an Accredited Provider using the CARF International website (rating = A-).
- The Complete Eldercare Planner: Where to Start, Which Questions to Ask, and How to Find Help, by Joy Loverde (rating = A+), Eldercare for Dummies, by Rachelle Zukerman (rating = A), and The Fearless Caregiver: How to Get the Best Care for Your Loved One and Still Have a Life of Your Own, by Gary Barg (rating = A), all explain how to manage the overwhelming stress, responsibilities, legalities, and medical aspects.
- Caregiving Tips A-Z: Alzheimers & Other Dementias, by Starr Calo-oy et al, helps you with the special issues that arise when you are dealing with dementia (Rating = A).
- See also:
- Caregiving at home: How to arrange and manage it; and how you can tell when its time for the next stage.
- Free resources:
- For general information, see Home Care Services for Seniors - Services to Help You Stay at Home, from HelpGuide.org (rating = A). Aging Parents and Elder Care is a very helpful website, regardless of whether you are caring for a parent, a spouse, or someone else (rating = A). The Caregiver Action Network is focused on you, the caregiver, and on the help you can get in meeting your responsibilities. Visit their site for support information of all kinds (rating = A). In Home Care, at the Elder Care Link website, offers a variety of informational articles that may help you (rating = A).
- You can advertise and pay directly for home health care support. If you can afford it, this may be the best option, if there is a relative or friend who cares enough to do this kind of work and especially if they have some experience or training in the medical field and who needs a source of income. The care might be less expensive, more convenient, and/or more trustworthy than hiring an agency whose staff are strangers to you. Keep in mind, though, that you will need to pay the nanny tax, in addition to any wages you pay. GTM Payroll Services offers a free online calculator to help you figure the tax, and they also offer (for a fee) services that will take care of all the paperwork (rating = A+).
- Getting It Your Way: Hospice at Home is a webpage that introduces you to this concept (rating = B+).
- Find a local Meals on Wheels program at Find a Meal (rating = A).
- Assisting the Homebound, at eSSORTMENT.com, is a useful article if you are not the actual caregiver, but know someone who is homebound, and you want to be helpful (rating = A-).
- Other resources:
- If you need to bring professional medical care into the home, Home Health Compare is a free service on the U.S. government Medicare website that will help you find and compare home healthcare service agencies offering nursing care, physical therapy, occupational therapy, speech therapy, medical social services, or home health aides (rating = A+). Quality Check, offered by the Joint Commission, lets you check (for free) the accreditation status of home health care providers (rating = A). If you are thinking of hiring a caregiver directly, check out the advice from Carolyn Wilson Scott on Finding and Interviewing Elderly Caregivers at HomeAdvisor.com (rating = A-).
- If you need home services other than medical usually someone to help with activities of daily living (such as dressing, toileting, preparing or eating meals, etc.) or help around the house you can use the free Agency Locator from the National Association for Home Care and Hospice (rating = A+).
- Day services outside the home provide opportunities for recreation and socializing for the person needing care, and welcome respite for the caregiver. To learn more, go to the National Adult Day Services Association site (rating = A-). Many models of short-term and longer-term respite services exist. For information about them, visit the ARCH National Respite Network and Resource Center website (rating = A). Your local area Agency on Aging should be able to direct you to options in your locality, and also tell you whether free transportation services are available.
- For a fee, you can get multi-database searches of criminal and other background information about a prospective hired helper at Intelius, IntegraScan, Black Book Online, or US Search (ratings = A).
- The American Medical Association Guide to Home Caregiving is an excellent compendium, written by experts, of pretty much everything you need to know to be an at-home caregiver (rating = A+).
- Caregiving: The Spiritual Journey of Love, Loss, and Renewal, by Beth Witrogen McLeod, deals with the inner aspects of caregiving (rating = A). If you are caring for a difficult parent, you might take solace, and glean a lot of practical tips, from the non-fiction novel Elder Rage, or Take My Father... Please!: How to Survive Caring for Aging Parents, by Jacqueline Marcell (rating = A).
- There's No Place Like (a Nursing) Home: 4 Powerful Steps That Will Change Your Life, by Karen Shoff, is for you if you are younger and concerned about not ending up in an institution yourself some day. This book tells you how to avoid it (rating = A).
- See also:
- Free resources:
- Finding an Assisted Living Facility, from RetirementWorks, discusses how to approach this decision, the benefits of assisted living, things to watch out for, and other resources you can refer to (rating = A).
- Choosing an Assisted Living Residence: A Consumers Guide, from the American Health Care Association National Center for Assisted Living, helps you think through the details of choosing the right facility, and offers helpful checklists of things to do and ask about (rating = A+).
- The Assisted Living Federation of America website can help you find facilities in your locality (rating = A).
- The Consumer Consortium on Assisted Living may be able to help if you are running into problems with the assisted living facility you have chosen. They can link you to state-by-state representatives of the National Ombudsman Resource Center (though their list is not always up-to-date) and to other interested agencies (rating = B+). They are a supplement, not a substitute, for the National Long-Term Care Ombudsman Resource Center listed in Understanding caregiving options, above.
- Other resources:
- Insider's Guide to Assisted Living: What You Really Need to Know Before You Sign a Contract, by Molly Shomer, is designed to help you choose the right facility, and avoid a mistake that might cause headaches down the road (rating = A). See also: Everything You Need to Ask When Selecting an Assisted Living Facility, by Cindy VanDusen and Humberto Fortuna (rating = A).
- The Insider's Guide to Dementia Care: What You Should Know About Assisted Living, Alzheimer's, and Dementia Care, by Katherine E. Goethe, Martha E. Leatherman, and Kathleen O'Brien, is an important book, because many assisted living facilities are not equipped to handle dementia cases, or dont do a good job of it (rating = A).
- See also:
- Free resources:
- Finding a Nursing Home or Hospice, from RetirementWorks, discusses how to approach this decision, the benefits of nursing homes and hospices, things to watch out for, and other resources you can refer to (rating = A).
- Planning Ahead - A Consumers Guide to Nursing Facilities, available through Utah Health Care, describes the basic types of facilities available, and helps you decide which one will be best for your situation, with helpful checklists of factors to consider and questions to raise (rating = A). You can also go to the Consumer Reports website and enter nursing homes into the search box, for relevant articles from their researchers (rating = A).
- Nursing Home Compare from the U.S. government Medicare website helps you find nursing homes in your area and compare their ratings overall, and specifically on health inspections, staffing, and quality measures (rating = A+).
- The Nursing Home Checklist on the Medicare website helps you cover the main points to look into when checking out a nursing home (rating = A-), as does Factors to Consider in Selecting a Nursing Home on the Elder Law Answers site (rating = A-).
- Hospice.net and the National Hospice and Palliative Care Organization are your most helpful resources on hospice care. Whether you are looking for services, or need information to support patients, caregivers, or other family members, these sites either will have the answer or will direct you to other sources that do (rating = A+).
- Other resources:
- The Baby Boomer's Guide to Nursing Home Care, by Eric M. Carlson and Katharine Bau Hsiao, is, as one reviewer notes, a comprehensive, easy to understand, authoritative, and enormously helpful guide to all issues related to seeking nursing home care and living in a nursing home (rating = A).
- The Nursing Home Guide: A Doctor Reveals What You Need to Know about Long-Term Care, by Joshua D. Schor, addresses the common questions from the perspective of a trained geriatric physician (Rating = A-).
- Living Well in a Nursing Home: Everything You and Your Folks Need to Know, by Lynn Dickinson and Xenia Vosen, deals with unusual and difficult situations that can occur in nursing homes (rating = A).
- The Hospice Choice: In Pursuit of a Peaceful Death, by Marcia Lattanzi-Licht, John J. Mahoney, and Galen W. Miller, is a very good source of information and understanding about the nature and purpose of hospice care, though some details are out of date (rating = A).
- See also:
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