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Family Caregiver Resources

Most family members who help older people don't see themselves as caregivers. Yet a caregiver is anyone who helps an older person with household chores, errands, personal care, or finances. You are a caregiver if you do any of these things. You are a family caregiver if you help someone who cannot do or is limited from doing any of these things for him/herself.
The goal of all caregivers is to help older adults maintain the highest level of independence that they can and remain safe. Like anyone else, older adults need to be self-reliant, in control of their own lives, feel safe, be understood, and be respected.

Common issues facing older adults include adequate income, physical and mental health, suitable housing, a variety of community services, retirement in health, honor and dignity, opportunity for meaningful activity, access to transportation, and protection from abuse, neglect and exploitation.

Caregivers may be related to older persons as spouses, children, in-laws, or other family members. Sometimes, caregivers are not related but assist as friends or neighbors. The caregiver role is complex and differs for everyone depending on the needs of the person who is aging.

Family and informal caregivers are the backbone of our long-term care system. The vast majority of long-term care in Iowa and the nation is provided informally and privately at no public cost. Often at great sacrifice, families keep a loved one at home, avoiding more costly institutional care. Most caregivers are reluctant to use formal help. They often provide care with little support, experience adverse consequences to their own physical and emotional well-being, and use formal services only when faced with a crisis. But, even the most self-sufficient people may need information and direct services to best meet the needs of both aging family members and themselves. This Family Caregiver section will provide links to information and resources that can help you and your loved one on your caregiving journey.

Below are some web sites that can help you to manage the practical day-to-day process of Caregiving as well as the emotional highs and lows that you as caregiver are sure to experience. By clicking on the links, you can find a wealth of information that will help you to work through your questions and concerns.

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Family Caregiving - It's Not All Up to You: If you're caring for a loved one who is ill or disabled, this site was created for you. It's a great place to find assistance, answers, new ideas and helpful advice - for you and your loved one.

www.familycaregiving101.org

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National Caregivers Library: The National Caregivers Library is one of the most extensive online libraries for caregivers that exist today. It consists of hundreds of articles, forms, checklists and links to topic-specific external resources. The library is organized into the eighteen Caregivers Resources categories. Clicking on any category will lead to a list of sub-categories. This, in turn, leads to lists of articles and other resources. Simply continue "drilling down" until you find what you need.

www.caregiverslibrary.org

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Long Distance Caregiving: It's the dreaded phone call -- your loved one lives 1,000 miles away and her neighbor calls you late at night to deliver the message that your relative hasn't picked up the mail in three days. When the neighbor knocked on the door, your loved one opened it and began talking in a confused manner, her hair was disheveled, her housecoat wrinkled and dirty, and the house was unkempt. The neighbor insisted that she spend the night at her house. You say "thanks, I'll be there as soon as I can book a flight". Suddenly you're playing a new role - you are now a long-distance caregiver. This guide is for people like you. It offers many useful tips, whether you live an hour away or across the country.

www.caregiver.org Click on Handbook for Long-Distance Caregiving

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Older Driver Safety Concerns: For older adults, limiting driving presents practical problems and can cause strong emotions, from sadness to anger. Family members themselves may feel angry, frustrated, or guilty about depriving their loved one of the freedom of driving. Despite these concerns, family members and older drivers alike prefer to keep these "conversations" in the family.
The Hartford Financial Services Group, Inc., along with the MIT AgeLab developed information to help families initiate productive and caring conversations with older adults about driving safety. These suggestions are based on research with drivers over the age of 50, including:
. A nationally representative survey.
. Focus groups with older adults who have modified their driving.
. Interviews with family caregivers of persons with dementia

www.thehartford.com/talkwitholderdrivers

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Telecaregiving Workshops for Family Caregivers are Now Available Online

Expert caregiving advice is only a few clicks away

Family Caregiver Alliance (FCA) has added a new feature to its website, an online audio archive of TeleCaregiving(sm) Workshops. Originally presented over the phone to thousands of caregivers and health professionals, the popular workshops offer caregivers the unique opportunity to learn practical care skills from expert instructors without leaving the comfort or convenience of their home or office.

Current workshop titles include:

Caring Together! Sharing Caregiving Responsibilities with Siblings and other Family Members
How Do You Know If You Have a Memory Problem?
Here but Not Here-Finding Hope When Your Loved One Has Memory Loss
Keeping Away the Caregiver Blues
Medications: Safe and Less Expensive Drug Therapy-A Caregiver's Role
There Must Be A Better Way Than This! Communicating with Someone with Dementia
Understanding and Treating Difficult Dementia Behaviors
Understanding Stroke and Vascular Dementia

Each title in the archive is available free, 24 hours a day, and includes an audiofile and companion written materials. Audiofiles are accessible in two formats: as an audio stream for instant online play, or as a file download for saving to a portable media device.

The TeleCaregiving(sm) Audio Workshop Archives can be found on FCA's website at www.caregiver.org under Fact Sheets & Publications, or at: http://caregiver.org/caregiver/jsp/publications.jsp?nodeid=345&expandnodeid=1853

TeleCaregiving(sm) Workshops are a program of Family Caregiver Alliance and California's statewide system of 11 Caregiver Resource Centers (CRCs). Funding is provided by the California Department of Mental Health.

Family Caregiver Alliance offers programs to support and sustain the important work of families and friends caring for loved ones with chronic, disabling health conditions. FCA offers programs at national, state and local levels. A wealth of caregiving advice, resource listings, newsletters, fact sheets, research reports, policy updates and discussion groups are available free on our website. Visit www.caregiver.org or call (800) 445-8106 for more information.

Advanced Directives and End of Life Decisions: Regardless of your loved one's age or health status, take the time now to help them think about and decide what kind of care they want in the event they become seriously ill and unable to make decisions for him/herself. Do not be afraid to talk frankly with your spouse, family, clergy and doctor about their preferences. Then, fill out an advance directive document and name a health care agent (the person who will make decisions for them if they cannot). These advance directives are easy to complete, legally valid and they clearly communicate to doctors and others what your loved one wants and does not want.
Life is sacred. It should be protected and preserved, and the dignity of every person should be respected, particularly at the end of life. Most people, when asked, say they would want to die in their own home; to be surrounded by family and loved ones; to be free from pain; and to have people praying for them. Unfortunately, this is far from the reality in most instances. Yet the majority of us remain silent on some of the most important decisions of our lives - how we would want to be cared for in case of a serious illness. Here are some websites that will assist you and your loved one to start a conversation as well as find helpful forms to complete to formalize your loved one's decisions and wishes.

Advance Directives (Living Wills & Durable (Medical) Power of Attorney)
Aging with Dignity
Beliefs, Values, and Wishes

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Housing - Ensuring a Safe Living Environment: Comfort and a place for self-expression are vital for everyone's well-being. Being able to stay in their own home gives our loved one feelings of their treasured independence. But their home should also be a place in which he/she can be safe from accidents and injuries. Listed below are resources for assessing the safety of a home, making changes in design to include the needed safety elements, and, when staying alone in their own home is no longer possible, what other housing options are available.

A Housing Safety Checklist for Older Adults
Removing Barriers in a Home
Universal Design for Homes
A Practical Guide to Universal Home Design
To Move or not to Move
A Safe Home is in Your Hands

If you and your loved one make the decision that living in her/his own home is not the best housing option, there are others such as elder group homes, assisted living and long-term care facilities. These options provide a continuum of care and are suited to the individual's care needs. More information can be found on this website by clicking on this link: Help Me Stay Home.

There may be home modifications that you would like to make either to your loved one's home, or your own home if you decide to move your loved one in to live with you. The Iowa Able Foundation offers low interest loans for many types of home modifications and purchase of assistive devices to those who qualify. You can access more information about this program through the Iowa Able Foundation website.

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Iowa Family Caregiver Program: What do they do?
1. Plan and develop services and programs for older Iowans to help them maintain independence and quality of life as long as possible.
2. Advocate for federal and state policies which affect the quality of life for older Iowans.
3. Serve as the coordinating entity with other governmental and community based organizations involved in area development efforts affecting older Iowans.
4. Increase public awareness, including that of government and community leaders, of the help available to older Iowans through the Area Agencies on Aging and other community entities.
5. Ensure that older Iowans and family caregivers have accurate and easily accessible information about what help is available to them and their older loved ones.

The Iowa Association of Area Agencies on Aging (I4A) offers a searchable website for services. For example, your loved one lives in Monona County and you live in Polk County and you need to find a person or agency that can provide home-delivered meals once a day. On the I4A website, you can conduct a search by county and by service from drop down lists - easy! It is an excellent resource even if your loved one lives with you so that you can find the resources/services that you need for any occasion. If you can't find the resources, or have questions that cannot be answered, you can also find the local area agency on aging and their contact information on the same site. www.I4A.org

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Iowa's Aging and Disability Resources: Many people do not think about what it takes to live well with a disability or age-related concerns until they need help or a crisis occurs. You can prepare for the many transitions that occur in one's lifetime by planning. Whether you are responding to a current need or planning for the future LifeLong Links can help you find the way through an array of choices, information, and options. You can make decisions about the services you or your loved one need using the information on this site. A broad range of services and supports are available when a person's independence is limited. In the aging community, these are sometimes called "long-term care" or "aging in place." In the disability community, these are "community supports" or "supports for independent living."

LifeLongLinks.org provides links for both populations.

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Caring for You, the Caregiver: Caregiving for an older adult is rewarding, but let's face it, caregiving can also be stressful - physically, emotionally, and financially. It is vital that you take good care of yourself so that you can remain in good health and thrive - not merely survive your caregiving experience. We do that by managing our self-care - that means we:
. Take responsibility for our personal well-being;
. Have realistic expectations about what our loved one can and cannot do;
. Focus on what we can do - be clear about what you can and cannot change and "let go" of the ones you can't change;
. Communicate effectively with others including family members, friends, health care professionals and your loved one.
. Learn from your emotions - realize there will be ups and downs and learn how to manage your emotions appropriately
. Get help when needed - an important part of self-care is knowing when you need help and how to find it; and finally;
. Set goals and work toward them. Be realistic in the goals that you set and take steps toward reaching those goals. Changes do not need to be major to make a significant difference.

One problem that caregivers frequently experience is trying to do it all and do it all alone. Ask yourself - is it possible to do it all? The answer to the question can be both "yes" and "no". It really depends on you. What is critical is how you define what it means to "do it all" and whether or not your definition of "doing it all" includes taking care of yourself.

Regular breaks from the tasks of caregiving are essential. Decide on the time, date, and activity - then follow through. Breaks don't have to be long to make a positive difference. It's important to plan some time for yourself in every day, even if that time is only for 15 minutes or half an hour. Most important is to do something that fulfills you and helps you to feel better. If you have difficulty taking breaks for yourself, consider taking them for your loved one. Care receivers also benefit from caregivers getting breaks.

Here are articles which are short and will give you tips about caring for yourself:
Communication
Caregiving Emotions
A Guide to Problem Solving
Handling Difficult Behavior
Be Good to Yourself
Working Caregivers
Changing Roles and Relationships
How to Help the Older Person Who Doesn't Want the Help

There are many support groups and educational seminars in which you can participate to help you in your Caregiving role. If you are interested, please contact Nicki Stajcar, Consumer Protection Advocate, Iowa Department of Elder Affairs nicki.stajcar@iowa.gov for more information.

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For additional information on family caregiving and senior health issues, consult the following sections on our related links page:

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