Family Caregivers
Are you a family caregiver?
The HealthWell Foundation recognizes the important role family caregivers play in the lives of the patients we serve. It is often a family caregiver who reaches out to HealthWell for assistance on behalf of their loved one. We know that caregiving can be both significantly rewarding and tremendously challenging, and we are honored to share these resources to help make the caregiving journey just a little bit easier.
Family caregivers provide a wide variety of support and care for family members, friends, and neighbors — from occasionally checking in on a loved one, to providing transportation and meals, to providing personal or even medical care. Here are just a few of the things family caregivers do for their loved ones:
- Checking on a friend or neighbor to see if they need anything
- Helping out with rides to the grocery store or health care appointments
- Doing housekeeping, yard work, or shopping
- Preventing isolation by ensuring a loved one has opportunities to socialize
- Organizing, monitoring, or administering medications
- Preparing or delivering meals
- Coordinating care for a loved one, including physical and/or mental health care, home health, or nursing care
- Providing personal care by helping with dressing, bathing and/or toileting
- Assisting with managing finances
Top challenges for family caregivers
Caregiving can be an extremely rewarding experience for caregivers and the loved one(s) they care for. It can also be time-consuming, expensive, stressful and full of emotional highs and lows.
How will acting as a family caregiver affect my life?
Family caregivers often feel isolated and overwhelmed. There is too much to do and not enough time. You often need to put your loved ones’ needs above your own, placing yourself at the bottom of the “to-do” list. Acting as a family caregiver may impact your:
Family caregiver infographic. A text-based description of the infographic can be found following the graphic.
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Your spending increases; income and savings often decrease.
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You need flexibility at work, which isn’t always available. You may need to change your work location, schedule, or type of work, or even stop working.
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You have less time to care for yourself, and you get less sleep and exercise. You often sacrifice your own health, putting off health care appointments and not taking medications as directed.
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You don’t have time for your support system, socialization, hobbies, and things that nurture you. At the same time, you experience increased stress, grief and loss, sadness, fear, or burnout.
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Your lack of time and energy for other family, friends, and colleagues may lead to damaged relationships.
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You struggle to keep up with caring for your own home and yard, laundry, and preparing healthy meals.
What types of care challenges will I face?
Family caregivers are shifting to more complex roles and responsibilities and caring for multiple family members with greater health or functional needs. You may feel unprepared for the wide variety of caregiving challenges you face. You may struggle to keep all the balls in the air, and likely haven’t had training about how to perform many tasks. It may feel like life is a series of constant crises.
Care challenges infographic. A text-based description of the infographic can be found following the graphic.
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Advance directives (living will, power of attorney for health care, etc.), power of attorney for finances, estate planning, and other important legal documents may need to be created and/or updated.
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Managing someone else’s money can be complicated, and you may never have dealt with the complications of insurance, properties, medical bills, benefits, retirement accounts, and other financial matters your loved ones need help with.
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Family caregivers may be expected to perform complex tasks like wound care, administering multiple medications, and dealing with medical equipment.
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You may help loved ones use walkers, canes, wheelchairs, or perhaps use a patient lift. Motivating them and helping them do their exercises can be time-consuming.
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Providing hands-on personal care for dressing, bathing, toileting, incontinence care and more can be complicated and perhaps challenging due to your relationship with those you care for.
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Finding your way through the health care systems (including Medicare and Medicaid), Veterans Affairs (VA), various public benefits, and other federal, state, and local systems can be time-consuming and confusing.
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Ensuring your loved ones get where they need to go when they need to be there can be difficult. You may be finding and scheduling rides or providing them yourself.
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Your loved ones are most likely to live in their own homes or in your home, but some may be living in assisted living, group homes, or skilled nursing facilities. Each comes with its own set of benefits and challenges. Safety at home is also a critical concern.
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Amidst the constant logistical and health issues, you need to find ways to ensure your loved ones experience joy, connect with others, and keep up the things that are important to them as much as possible. This may include care for their beloved pets.
Top resources for family caregivers
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- AARP Family Caregiving Site – provides tips, tools, videos, resources, free caregiving guides, and state resource guides for family caregivers. Also offers a Spanish-language and a toll-free caregiver resources phone line at 877-333-5885. AARP also offers a Family Caregivers Discussion Group on Facebook.
- Caregiver Action Network (CAN) provides information, educational materials, peer support, and a Caregiver Help Desk: (855) 227-3640 for family caregivers.
- Family Caregiver Alliance offers services and resources for family caregivers, the Family Care Navigator, a state-by-state list of services and assistance, and a toll-free phone line at 800-445-8106.
- National Alliance for Caregiving (NAC) and the Adira Foundation offer a Take Care Community where organizations upload a wide variety of resources available to family caregivers.
- National Council on Aging provides information for caregivers.
- Rosalynn Carter Institute for Caregivers offers coaching support for both family caregivers and professional caregivers, as well as various education and service programs.
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- AARP Veterans and Military Families Initiative offers free resources and tools to help families navigate VA benefits and services and caregiver supports.
- Veterans Affairs – VA Caregiver Support Program provides a free caregiver support line (855-260-3274) as well as programs that support families caring for veterans. Local caregiver support staff are also available at the local level. VA Caregiver Support carries out its mission primarily through two programs: the Program of General Caregiver Support Services (PGCSS) and the Program of Comprehensive Assistance for Family Caregivers (PCAFC).
- Elizabeth Dole Foundation offers programs that provide support for military and veteran family caregivers at the national, state, and local level, including a free Respite Relief program and peer support.
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- Hospice Foundation of America offers guidance and resources for caregivers around hospice care and grief.
- National Hospice and Palliative Care Organization provides the CaringInfo site to help patients and caregivers plan ahead, understand health care choices, prepare for the end of life, and understand what hospice and palliative care provides.
- National Association for Home Care and Hospice offers patient and family education and resources.
Read More From Real World Health Care
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- ALS Association offers support for caregivers.
- Alzheimer’s Association offers caregiver information and resources.
- Alzheimer’s Foundation provides extensive resources and educational events for caregivers of those living with Alzheimer’s and other forms of dementia.
- American Heart Association offers caregiver support.
- American Lung Association provides a Patient and Caregiver Network and other resources for caregivers.
- American Cancer Society provides tips, tools, and resources for family and caregivers, as well as rides and other services for those living with cancer.
- American Diabetes Association offers resources and information for caregivers.
- American Liver Foundation provides caregiver resources.
- Arthritis Association provides a toll-free support line for patients and caregivers.
- Autoimmune Association offers tips for those caring for someone with an autoimmune disease.
- Bone Health & Osteoporosis Foundation devotes a section of their website to caregivers, including a professional partner network.
- CancerCare provides free, professional support services for caregivers and loved ones, as well as caregiving information and additional resources.
- Cancer Support Community offers resources and information to cancer patient caregivers, including a Frankly Speaking About Cancer booklet series.
- Lupus Foundation of America devotes a section of their website to caregivers, including a free caregiver toolkit.
- Mental Health America provides information, tools, and resources for caregivers.
- Multiple Sclerosis Association of America provides information for caregivers
- National Multiple Sclerosis Society offers information for caregivers.
- Parkinson’s Foundation has a Care Partner Program and other resources for family caregivers.
- Pulmonary Fibrosis Foundation offers information for caregivers.
- Surviving Breast Cancer offers a Caregivers Guide to Breast Cancer.
- Triage Cancer provides patients, caregivers and health care professionals with free one-on-one help.
Read More From Real World Health Care
Caregiving Essentials
These articles address the “nuts and bolts” of caregiving, with information and resources about many of the issues that family caregivers frequently face.
- How can I create a caregiving plan?
- How can I get help with the financial aspects of caregiving?
- Where can I get help understanding Medicare and Medicaid?
- How can I find the best housing and care for my loved ones?
- I’m a new caregiver, how do I get started?
- What are the legal and other documents I need for caregiving?
- I’m exhausted and stressed out…how can I cope and get help?
- What are fun, quality-of-life activities I can do with my loved ones? Why is joy a critical survival skill for caregivers?
- How can I juggle work and caregiving?
- What do I need to do when my loved one dies?
HealthWell thanks Caregiving expert Amy Goyer for contributing content for this resource page. Amy Goyer is a nationally known caregiving expert and author of Juggling Life, Work, and Caregiving. A passionate champion for caregivers, she has also been one her entire adult life, caring for her grandparents, parents, sister, and others. Connect with Amy on Facebook, Twitter, and LinkedIn.
HealthWell’s blog, Real World Health Care, features compelling content on health care issues affecting Americans through profiles of patient advocacy organizations and the people and programs changing the way health care is delivered. Our latest caregiving-related blog posts are featured here.