Services For Caregivers
In homes across the nation, people are struggling to meet their obligations to their children, to their parents, to their community. Choosing the right kind of care for a family member who is frail or vulnerable due to injury, illness or age is one of the most difficult decisions you will ever have to make. Use the resources on these pages to help you balance the care you provide for others and yourself along with your other responsibilities.
Contact Easter Seals for more information about Easter Seals services for caregivers in your area.
Being a Caregiver
Are you a caregiver?
Are you handling your aging mother’s bills? Do you take your grandfather to the grocery store once a week? Do you take time off work to drive your aunt to her doctor appointments? If so, you are a caregiver … and there are many services and supports available to you and the person for whom you are caring.
Being a Caregiver for Someone You Love
What does it mean to be a caregiver? Caregiving is a different experience for everyone depending on how much care your loved one requires, which can range from a friendly visit once in a while to 24 hour care.
Staying Involved When You Don’t Live nearby
Long-distance, or remote, caregiving has quickly become a reality. Long distance caregivers are usually family members who provide support, care or care coordination from at least an hour away. Although the distance may change, the responsibility and dedication remains the same, and Easter Seals has many resources available to help you out.
Planning for the Future
Whether You’re 39 or 99, it’s never too early to start planning. For most of us, the majority of our older years are spent healthy and active. However, many people experience an eventual need for assistance due to acquired disability, aging related conditions and/or other illnesses. With thoughtful planning, and services and supports, most of us can continue to live in, contribute to and stay connected to our communities.
Caregiving in America: The Big Picture
It is important to be aware of our changing demographics. Statistics today will quickly become personal realities — caregiving will become part of our family lives, our friendships and neighborhoods.
Caregiving 101: A First Glance at Aging America
It’s old news that we are growing older as a nation, but only four in ten Americans, aged 40 to 70, know that 60 to 70 percent of 65-year-olds today will require long-term care services at some point in their lives.
There are more than 45 million caregivers for older adults. These are people who need information and support to make their lives easier.
Who Needs Our Care?
We need to be aware of our changing demographics. Statistics today will quickly become personal realities — affecting our families, friends, and neighbors.
- The number of people aged 85 or older—those most likely to need long-term care services is expected to increase by 74 percent between 2007 and 2030. (AARP Public Policy Institute. Across the States 2009. Profiles of Long Term Care and Independent Living.)
- In the next 20 years, one in five people will be 65 or older and this population is projected to grow by more than four times as fast as the population as a whole. (U.S. Census Bureau, Current Population Survey, Annual Social and Economic Supplement, 2008). And older adults are living longer, too.
The growing number of older adults will be trying to manage conditions like dementia, falls, diabetes, stroke and sensory losses. Thirteen percent of persons over the age of 65 have Alzheimer’s disease. (2009 Alzheimer’s Disease Facts and Figures, Washington, DC. Alzheimer’s Association.)
Older adults face an increasing need for transportation services. The average number of years a person continued to drive — the driving expectancy — was significantly less than overall life expectancy.
- Men and women who were still driving at ages 70 to 74 were expected to drive, on average, another 11 years. But these men were expected to live about 17 more years, and the women nearly 21 more years.
This gap between driving expectancy and overall life expectancy means men in this age group who stopped driving were dependent on alternative transportation for an average of six years. For women, the gap translated into about 10 years of dependence on other transportation modes. (Foley, DJ, Heimovitz HK, Guralnik JM, Brock DB, “Driving Life Expectancy of Persons Aged 70 Years and Older in the United States,” ‘American Journal of Public Health,’ vol. 92, no. 8 pp. 1284-1289.)
Who are Our Caregivers?
Caregivers are not just professionals. You are a caregiver if you provide social or physical support to an aging relative or friend or to a person with a disability.
- Family caregivers provide the overwhelming majority of long-term services in the U.S., approximately 80 percent. (Thompson, L., Long-term care: Support for family caregivers [Issue Brief]. Washington, DC: Georgetown University, 2004 and Long-Term Care Financing Project, Long-term Care Users Range in Age and Most Do Not Live in Nursing Homes. U.S. Agency for Healthcare Research and Quality, November 8, 2000.)
The most common type of informal caregiving relationship is an adult child caring for an older parent.
- 1.4 million children ages eight to 18 provide care for an adult relative; 72 percent are caring for a parent or grandparent. (National Alliance for Caregiving and the United Hospital Fund, Young Caregivers in the U.S., 2005.)
The increasing number of older adults will put even more caregiving pressure on fewer middle generation adults.
- As the baby boomers turn age 85 between 2030 and 2050, the age 85+ population will skyrocket by another 118 percent. (U.S. Census Bureau, Current Population Survey, Annual Social and Economic Supplement, 2008)
The current nursing home facilities are ill-equipped to handle the growing number of older adults and this population will be more dependent on family for care.
- Current nursing home facilities are operating at an 88 percent capacity. (American Health Care Association, 2009).
We would rather ignore the statistics if we are not personally affected by them. But the truth is, it’s happening sooner than we think,
- First baby-boomers will turn 65 in 2011. (Administration on Aging).
It’s more common than we think,
- In the past 12 months, an estimated 65.7 million people in the U.S. have served as unpaid family caregivers to an adult or a child.
We don’t have the information we need to provide the best care for our loved ones;
- 78% of caregivers feel they need more help or information about at least one of 14 specific topics related to caregiving.
And caregiving duties will most likely fall on you or someone close to you.
- Family caregivers provide about 80 percent of all long-term care services in the U.S. (Metlife Mature Market Institute, 2001).
Without the right support and information, the current situation will affect:
- Family caregivers experiencing extreme stress have been shown to age prematurely. This level of stress can take as much as 10 years off of a family caregiver’s life. (Elissa S. Epel, et al. From the Proceedings of the National Academy of Sciences, Dec 7, 2004, Vol 101, No. 49).
Most caregivers work either full or part-time while providing care (59 percent). (National Alliance for Caregiving with AARP and MetLife, 2004 in addition to their caregiving responsibilities).
- Family caregivers comprise 13 percent of the workforce. In one study, 37% of human resource directors did not feel that their organizations made a real and ongoing effort to inform employees of available assistance for managing work and family responsibilities. (Wagner, D. and Neal, M. (2002). Working Caregivers: Issues, Challenges and Opportunities for the Aging Network. National Family Caregivers Support Program, Program Development Issues Briefs, Administration on Aging, DHHS. Galinsky, E. and J.T. Bond. (1998). The 1998 Business Work-Life Study. New York: Families and Work Institute).
- More than half of working caregivers (57 percent) say they have to go into work late, leave early or take time off during the day to provide care. (National Alliance for Caregiving with AARP and MetLife, 2004).
For some adults with heavy caregiving responsibilities, the impact on their ability to work is significant. Some working caregivers reported having to (17 percent), shift from full-time to part-time work (10 percent), quit work entirely (6 percent), lose job benefits (5 percent), turn down a promotion (4 percent), or choose early retirement (3 percent). (National Alliance for Caregiving with AARP and MetLife, 2004).
Over the course of a caregiving “career,” family caregivers who provide intense personal care can lose as much as $659,000 in wages, pensions, and Social Security. (Dimensions of Family Caregiving: A Look Into the Future; Metlife Mature Market Institute, 2000).
And Our Economy
American businesses lose between $11 billion and $29 billion a year in reduced productivity costs related to caregiving responsibilities. This includes workplace disruptions, scheduled and unscheduled absences, leaves of absence, a reduction from full- to part-time work, early retirements, and leaving work entirely to care for a loved one. (Metropolitan Life Insurance Company, 1997).
- Assess your loved one’s medical, financial and transportation needs.
- Explore and discuss preferences in terms of care and living arrangements with the person you care for.
- Know there are resources, services, and people to help.
What It Means to Be a Caregiver
You are a caregiver if you provide social or physical support to an aging relative or friend, or to a person who is disabled. Caregivers may make weekly visits to a sick mother still living on her own. They may bring a frail father into their home for care. They may arrange for services for a relative who lives hundreds of miles away.
What caregivers share in common is the fact that they take time and energy from their lives to care for someone who needs their help.
Reactions to Being a Caregiver
Caring for someone on a regular basis is a mixed experience. There are positive feelings associated with helping others. If you’re caring for your mother, father, or spouse, there is the satisfaction of knowing you are, in some way, returning the support they once provided you.
Caring for a frail relative also has its difficulties. Most caregivers experience some of these feelings:
- A sense of isolation, of being alone with a huge responsibility.
- Worry or doubt about the quality of the care they are providing.
- Guilt that they are not doing enough.
- Resentment toward the person cared for.
- Anger at the lack of time they have for themselves and their families.
- The frustration that this is not what they had planned for this time in their lives.
- Fear about how much longer they can keep this up, given all of the other demands on their time.
- Confusion about where to turn for help.
- A sense of loss because the person they love has changed so much.
- Physical fatigue.
Any of these responses, either alone or in combination, can lead to a sense of being overwhelmed. This is both common and understandable. It is important to monitor yourself and be alert to signs of caregiver exhaustion:
- Feeling drained of time and energy.
- Loss of sleep.
- Bottled up feelings of anger or frustration.
- Feeling trapped.
- Being reluctant to seek outside help.
- Being focused excessively on caregiving.
Caregiving at a Distance
As you prepare to get involved in caregiving from a distance, it’s reassuring to know that an entire network of eldercare support services is out there to help. Here are three key resources you can tap.
If the person is already in an institutional care setting, coordinate with the professionals on the facility’s team. Ask whether it’s appropriate, given your relationship to the person and his or her wishes concerning confidentiality, for you to receive and give input to the person’s plan of care.
Try to schedule your next visit to coincide with a care conference at which the person’s needs and
the care plan will be discussed.
If community-based eldercare services are needed, contact the local Area Agency on Aging. You
can find a phone number in the Yellow Pages, or by phoning the National Eldercare Locator
A growing number of long-distance caregivers find it helpful to work with a geriatric care
manager. These eldercare professionals can be of great value in assessing caregiving needs and coordinating needed services. Care managers can be consulted to help solve a one-time problem, such as arranging for an alternate living situation and coordinating the move. They can also develop an ongoing relationship with your family in which the care manager stays involved as a local advocate and care coordinator.
Taking Care of Yourself
There are steps you can take to avoid or reverse caregiver exhaustion. Remember: taking care of yourself is taking care of the person who depends on you. Try some of these ideas drawn from the experiences of many caregivers like yourself:
As long as the person you are caring for is able, involve him or her in the decisions that go along with care; try to be active partners. It will help your loved one retain a sense of independence while taking some of the burdens off of you.
Remember your needs
You need time to get away from your role as caregiver, to relax and to get additional support. These needs may create feelings of conflict or guilt, but again remember: you are taking care of the person who needs you by taking care of yourself.
The earlier you discuss needs, the more time you have to explore possibilities. Then you will feel better about the choices you need to make in the future.
Understand what you are dealing with
Gather information about the specific disease or conditions of the person you’re caring for. The more you know, the better you’ll be able to plan for the future.
Ask other family members and friends for help. People usually are willing and pleased to be asked; they just may not volunteer. Consider a family meeting to brainstorm ideas and to see how to share responsibilities.
Share with someone outside the family about your reactions to caregiving. Use a friend who isn’t close to the situation as a sounding-board.
Just when you think you are in control, something will change. Being thrown off balance is frustrating; try to be ready for change.
Help is Available
As a caregiver, you are never alone. There are many people—family, friends, health care professionals, community services and others—who can help:
- Adult day care provides daytime care and social activities for older adults. Programs will vary as to amount and type of care available. Some provide transportation.
- Home care offers services that take place in the home. They can include: health care provided by professionals, such as nurses and nurse aides; help with baths, dressing, and eating; housekeeping; and social visits.
- Hospice care provides support and care for terminally ill persons who choose to remain at home in the care of a relative or friend.
- Legal and financial services include help with preparing a durable power of attorney or other types of health care appointment, a living will, or assistance with financial planning, public benefits, taxes, Social Security, and disability benefits. These services can be provided by skilled volunteers or paid professionals.
- Long-term care is available through nursing homes and sub-acute care facilities for temporary or permanent care, especially during periods of acute illness.
- Meal programs offer a full range of services, including Meals On Wheels-type programs that deliver meals to older adults at home, as well as group meals served at senior centers, churches, synagogues, or schools.
- Reassurance programs provide regular phone calls to check in on elderly persons who live alone, or electronic monitoring devices that signal when help is needed.
- Rehabilitation programs provide occupational, physical, and speech therapies through hospitals and long-term care and day-care facilities.
- Respite care programs provide temporary relief for caregivers. A person comes into the home for prearranged periods of time, while the regular caregiver takes a break. Some hospitals and nursing homes have short-term, overnight onsite programs.
- Support groups provide emotional support, information sharing, and companionship for caregivers. Some groups are condition-specific, such as Alzheimer’s support groups.
- Transportation programs provide rides to and from medical appointments, day care, and other destinations.
To Sum Up
You may think that you just do not have the time, talent or resources to be a caregiver. But what it really comes down to is simply “being present” for another. While many aspects to caregiving call upon a wide range of skills—cooking, cleaning, bill paying, etc.—the starting, and ending, the point is focusing on another person. We may find at times that we are short on funds, skills, or time, but when caring for another, we need to be long on attention. Holding someone’s hand, pulling the chair closer to the bed, putting everything else aside—that’s the heart of being a caregiver for someone you love.
- Care Planner, the Centers for Medicare and Medicaid Services online care decision support tool, helps assess and access support services and options.
- The U.S. Administration on Aging offers fact sheets as well as an online booklet entitled “Because We Care” with suggestions, resources, and contact information for people who are caring for an older or disabled family member at home.
- The National Alliance for Caregiving was created to conduct research, do policy analysis, develop national programs, increase public awareness of family caregiving issues, work to strengthen state and local caregiving coalitions, and represent the US caregiving community internationally. The Alliance’s mission is to be the objective national resource on family caregiving with the goal of improving the quality of life for families and care recipients.
- The National Family Caregivers Association’s website offers tips, information, and support for people who are serving as a caregiver for aged, chronically ill, and disabled loved ones.
- The Alzheimer’s Association website is a good source for information on care strategies for people with Alzheimer’s and related dementias. Sections on day-to-day care, caregiver challenges, and coping strategies offer valuable suggestions. The Association also offers a 24-Hour Contact Center, staffed by professionals who understand dementia and its impact. Call (800) 272-3900 with questions or concerns about memory problems, dementia or Alzheimer’s disease.
Five Apps for Caregivers
Caring for a loved one can be difficult due to all the responsibilities involved. Whether you’re scheduling medical appointments, managing medications, or even sharing important information with other family members or caretakers, it’s a lot to manage.
Fortunately, your smartphone or tablet can help thanks to the many apps geared toward caregivers. There are thousands of apps which can lighten your load and keep you organized, informed and even more calm.
CareZone: A Med List in Your Pocket by CareZone
CareZone makes it simpler to take care of yourself, an aging parent, and other family members that need your help.
SIMPLIFIED MEDICATION MANAGEMENT
Managing medications can be a hassle. We’ll do the heavy lifting for you.
- Take pictures of meds (prescriptions, OTC, and supplements) and the names, dosages, and other details are automatically added for you. (No typing!)
- Always have a list of medications, dosages, and schedules with you.
- Receive reminders when it’s time to take a med, or refill a prescription and track adherence progress by recording when doses are taken.
- Print a pre-formatted schedule to put on the fridge, or share a detailed med list with a doctor via email.
STAY ORGANIZED, COORDINATED, AND IN SYNC
We’ll help you organize the mountain of other information you’re challenged to manage in healthcare situations, and coordinate with family and caregivers.
Available for IOS
Available for Google Play
Blood Pressure Companion by Maxwell Software
Blood Pressure Companion App serves its purpose well. It is an “at your fingertips” organizer for tracking systolic and diastolic blood pressures along with heart rate and body weight. This app centralizes all the data, calculates Mean Arterial Pressure, allows various reports to be created, and is ideal for caregivers to communicate the data to health care professionals. Being actively involved in one’s own care by self-monitoring blood pressure or assisting a loved one provides powerful and useful information.
Available for IOS
About my day by University of Victoria
About My Day is a free app for educators, caregivers and parents to track the daily events of individuals with intellectual or cognitive disabilities, developmental delays or autism. The app can be used as a daily digital journal/portfolio and the information can be used as a means to share with others such as family members or education professionals. It is customized to the individual, with a daily calendar, notes of the day, ability to upload a picture of the author within the notes section, location upload (where the events take place), and note saving.
Available for IOS
AutoVerbal Pro Talking Soundboard!by No Tie, LLC
AutoVerbal Pro is an affordable augmentative communication app for children and adults. It provides a set of pre-programmed words and phrases with recognizable picture images and additional buttons that can be programmed by the user or caregiver. The buttons are presented in categories and include personal items, food/drinks, feelings, question words, people, personal care items, clothing, places, things, transportation, animals, sports, colors, shapes numbers, letters, days of weeks and months. The app can be helpful for someone who is non-verbal due to a stroke, traumatic brain injury or developmental delay. This app supports Family Sharing. With Family Sharing set up, up to six family members can use this app.
Available for IOS
CanJournal by University of Victoria
CanJournal is designed to help journal daily activities for individuals that struggle with memory loss using pictures, short video clips, and short-term/long-term progress tracking of activities. The activities can chronicle the daily progress of individual tasks, assistance with memory in the completion of a task or a simple daily journal. Aside from the app’s ability to increase individual independence for individuals with memory loss, it can also be used as a tool for educators to share the daily activities or progress of students with parents and caregivers.
Available for IOS
Take a Breath! – Meditation for Stress Relief by Meditation Oasis
Take a break now and let your stress melt away!
You can enjoy the deep relaxation, stress relief and benefits of meditation now with this app by Meditation Oasis™. Featuring two popular meditations from the Meditation Oasis podcast, the app gives you the option to listen with or without music or nature sounds. You can also listen to relaxing music and nature sounds alone.
Available for IOS
BridgingApps.org: Apps for Special Needs People
Visit BridgingApps.org to see 3,008 apps for people with special needs
BridgingApps, a program of Easterseals Greater Houston, is a community of parents, therapists, doctors, and teachers who share information about using mobile devices (iPad, iPhone, and Android) with people who have special needs.
Cristen Reat is a co-founder of BridgingApps and a mother who found success when using a mobile device with her children who have special needs.