I give workshops on care for the caregivers as well as advocacy for patients and they fill an important role for those charged with caring or advocating for those who need extra help. This post was a result of reading a post by "A Place for Mom" who provides and honours family caregivers.
Here are some things that caregivers and others need to know and remember.
Caregiving is costly.
According to the National Alliance for Caregiving and the Center for Retirement Research at Boston College about 17% of adult children take care of their parents at some point in their lives. Once they become caregivers, adult children are likely to commit a substantial amount of time, about 77 hours on average each month to look after their relatives.
For people who provide round-the-clock care, the commitment is even greater. More than 40% of caregivers spend at least $5,000 a year to help pay for transportation, clothing and medical costs, according to a survey by Caring.com, a website that helps pair consumers with caregivers.
Help is available.
If you do decide that your loved one needs more than you alone can provide, A Place for Mom can help as can the following sites:
Next Step in Care
Financial Steps for Caregivers
WISER (Women’s Institute for a Secure Retirement)Financial Steps for Caregivers: What You Need to Know About Money and Retirement is designed to help you identify financial decisions you may face as a caregiver. The decision to become a caregiver can affect both your short-term and long-term financial security, including your own retirement. For more information on planning for a secure retirement, please visit http://www.wiserwomen.org.
National Transitions of Care Coalitionwww.NTOCC.orgThe last concern most individuals have when they or their loved ones are dealing with a health situation is ensuring effective communication between their doctors, nurses, social workers and other healthcare providers. However, poor communication between well-intentioned professionals and an expectation that patients themselves will remember and relate critical information that can lead to dangerous and even life-threatening situations. NTOCC has brought together industry leaders who have created resources to help you better understand transitional challenges and empower you as part of the care giving team.
Family Caregiver Alliance
http://caregiver.org/node/3831Established in 2001 as a program of Family Caregiver Alliance, the National Center on Caregiving (NCC) works to advance the development of high-quality, cost-effective policies and programs for caregivers in every state in the country. Uniting research, public policy and services, the NCC serves as a central source of information on caregiving and long-term care issues for policymakers, service providers, media, funders and family caregivers throughout the country.
Caregiver Action Network
http://www.caregiveraction.org/
Resources from the Caregiver Action Network, including a Peer Forum, a Story Sharing platform, the Family Caregiver Tool Box and more. CAN also provides support for rare disease caregivers at http://www.rarecaregivers.org
Knowledge can make your job easier.
A National Alliance for Caregiving survey found that 44% said that reading books about caregiving and visiting supportive websites helps them not only to manage their daily frustration but also gives them a sense of community.
You are America’s #1 long-term care provider.
Family caregivers provide a staggering 90% of long-term care in America. (The National Academy of Medicine)
Your work is valuable.
The value of the unpaid care these 65 million caregivers provide is estimated to be worth $375 billion. (National Alliance for Caregiving)
You are not alone.
More than 65 million Americans care for their ageing or disabled loved ones on a yearly basis. (National Alliance for Caregiving)
you can take a break.
Just because you’ve committed to caring for a parent or senior loved one doesn’t mean you can’t take a break. Respite care is short-term care, lasting anywhere from a few hours to a few weeks, that can be provided at a local senior living community or even in the home. Adult daycare is another similar option. These services allow family caregivers to “recharge” with the knowledge that their loved one is safe and sound.
You have limits.
Despite the demonstrated perseverance and strength of family caregivers, each of us has limits. It’s important to recognize when our loved one has declined to a point that professional care is the best option.
You have someone to talk to.
Caregiver support groups meet throughout the U.S. For those caring for a loved one with Alzheimer’s disease or dementia, the Alzheimer’s Association maintains a database of support groups. General caregiving support groups that aren’t specifically focused on memory loss can be found by contacting your local hospital. Furthermore, there are many online support groups for caregivers.
You have to care for yourself first.
This is one of the most important things to remember. If you’re not keeping yourself happy and healthy, it’s doubtful that you will be able to do your best for your parent or senior loved one. Review the “Caregiver Bill of Rights” and remember to take care of yourself.
Here are some things that caregivers and others need to know and remember.
Caregiving is costly.
According to the National Alliance for Caregiving and the Center for Retirement Research at Boston College about 17% of adult children take care of their parents at some point in their lives. Once they become caregivers, adult children are likely to commit a substantial amount of time, about 77 hours on average each month to look after their relatives.
For people who provide round-the-clock care, the commitment is even greater. More than 40% of caregivers spend at least $5,000 a year to help pay for transportation, clothing and medical costs, according to a survey by Caring.com, a website that helps pair consumers with caregivers.
Help is available.
If you do decide that your loved one needs more than you alone can provide, A Place for Mom can help as can the following sites:
Next Step in Care
http://www.nextstepincare.org
Next Step in Care provides easy-to-use guides to help family caregivers and health care providers work closely together to plan and implement safe and smooth transitions for chronically or seriously ill patients.
Lotsa Helping Handswww.lotsahelpinghands.comLotsa Helping Hands is a free caregiving coordination web service that provides a private, group calendar where tasks for which a caregiver needs assistance can be posted. Family and friends may visit the site and sign up online for a task. The website generates a summary report showing who has volunteered for which tasks and which tasks remain unassigned. The site tracks each task and notification and reminder emails are sent to the appropriate parties.
Caring.com
www.caring.comCaring.com is the leading online destination for family caregivers seeking information and support as they care for ageing parents, spouses, and other loved ones. Caring.com offers helpful content, advice from leading experts, a supportive community of caregivers, and a comprehensive directory of eldercare services. Caring.com’s carefully researched and expert-reviewed content includes advice from a team of more than 50 trusted leaders in geriatric medicine, law, finance, housing, and other key areas of healthcare and eldercare.
Next Step in Care provides easy-to-use guides to help family caregivers and health care providers work closely together to plan and implement safe and smooth transitions for chronically or seriously ill patients.
Lotsa Helping Handswww.lotsahelpinghands.comLotsa Helping Hands is a free caregiving coordination web service that provides a private, group calendar where tasks for which a caregiver needs assistance can be posted. Family and friends may visit the site and sign up online for a task. The website generates a summary report showing who has volunteered for which tasks and which tasks remain unassigned. The site tracks each task and notification and reminder emails are sent to the appropriate parties.
Caring.com
www.caring.comCaring.com is the leading online destination for family caregivers seeking information and support as they care for ageing parents, spouses, and other loved ones. Caring.com offers helpful content, advice from leading experts, a supportive community of caregivers, and a comprehensive directory of eldercare services. Caring.com’s carefully researched and expert-reviewed content includes advice from a team of more than 50 trusted leaders in geriatric medicine, law, finance, housing, and other key areas of healthcare and eldercare.
- Caring.com’s Steps & Stages offers a free guide to Alzheimer’s care. Expert advice and practical tips provided in a Custom Care Guide and e-newsletter help family caregivers learn what to expect, what to do, and how to cope with Alzheimer’s.
- Caring.com also publishes findings from research with family caregivers at http://www.caring.com/about/news.
Financial Steps for Caregivers
WISER (Women’s Institute for a Secure Retirement)Financial Steps for Caregivers: What You Need to Know About Money and Retirement is designed to help you identify financial decisions you may face as a caregiver. The decision to become a caregiver can affect both your short-term and long-term financial security, including your own retirement. For more information on planning for a secure retirement, please visit http://www.wiserwomen.org.
National Transitions of Care Coalitionwww.NTOCC.orgThe last concern most individuals have when they or their loved ones are dealing with a health situation is ensuring effective communication between their doctors, nurses, social workers and other healthcare providers. However, poor communication between well-intentioned professionals and an expectation that patients themselves will remember and relate critical information that can lead to dangerous and even life-threatening situations. NTOCC has brought together industry leaders who have created resources to help you better understand transitional challenges and empower you as part of the care giving team.
Family Caregiver Alliance
http://caregiver.org/node/3831Established in 2001 as a program of Family Caregiver Alliance, the National Center on Caregiving (NCC) works to advance the development of high-quality, cost-effective policies and programs for caregivers in every state in the country. Uniting research, public policy and services, the NCC serves as a central source of information on caregiving and long-term care issues for policymakers, service providers, media, funders and family caregivers throughout the country.
Caregiver Action Network
http://www.caregiveraction.org/
Resources from the Caregiver Action Network, including a Peer Forum, a Story Sharing platform, the Family Caregiver Tool Box and more. CAN also provides support for rare disease caregivers at http://www.rarecaregivers.org
Knowledge can make your job easier.
A National Alliance for Caregiving survey found that 44% said that reading books about caregiving and visiting supportive websites helps them not only to manage their daily frustration but also gives them a sense of community.
You are America’s #1 long-term care provider.
Family caregivers provide a staggering 90% of long-term care in America. (The National Academy of Medicine)
Your work is valuable.
The value of the unpaid care these 65 million caregivers provide is estimated to be worth $375 billion. (National Alliance for Caregiving)
You are not alone.
More than 65 million Americans care for their ageing or disabled loved ones on a yearly basis. (National Alliance for Caregiving)
you can take a break.
Just because you’ve committed to caring for a parent or senior loved one doesn’t mean you can’t take a break. Respite care is short-term care, lasting anywhere from a few hours to a few weeks, that can be provided at a local senior living community or even in the home. Adult daycare is another similar option. These services allow family caregivers to “recharge” with the knowledge that their loved one is safe and sound.
You have limits.
Despite the demonstrated perseverance and strength of family caregivers, each of us has limits. It’s important to recognize when our loved one has declined to a point that professional care is the best option.
You have someone to talk to.
Caregiver support groups meet throughout the U.S. For those caring for a loved one with Alzheimer’s disease or dementia, the Alzheimer’s Association maintains a database of support groups. General caregiving support groups that aren’t specifically focused on memory loss can be found by contacting your local hospital. Furthermore, there are many online support groups for caregivers.
You have to care for yourself first.
This is one of the most important things to remember. If you’re not keeping yourself happy and healthy, it’s doubtful that you will be able to do your best for your parent or senior loved one. Review the “Caregiver Bill of Rights” and remember to take care of yourself.
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