Elder Caregiver Basics: Issues, Resources and Stress Management

Module 1: Elder Caregiver Basics

Learning Objectives

After completing this module, you will be able to:

  1. Understand the roles, issues and emotions of elder care
  2. Identify and use resources
  3. Learn practical stress management tips

Index/Content of this Module  

This module is an overview of elder caregiver basics including demographics, the role of the family caregiver, resources for caregivers and stress management for caregivers.
(Click on a topic below to go to that area of the page)

1. Demographics of Aging Population and Family Caregivers
2. Who Me?  I’m not a Caregiver
3. Caregiver’s Checklist
4. The Three Most Important Caregiver Tasks
5. Typical Emotional Reactions of Caregivers
6. Guilt
7. Grief
8. Engaging the Whole Family in Caregiving
9. Using “I” Statements to Ask for Help
10. Grandparents Raising Grandchildren
11. How Caregivers Help Older Adults
12. Resources for Caregivers
13. Assistance Available through the Area Agency on Aging
14. Caregiver Stress Management
15. Practical Stress Management Tips
16. Sources     

Demographics of Aging Population and Family Caregivers 

· Most rapid population growth is among people 85+ with an increasing number of age 100+, mostly female
· 62% of elder caregivers are working part-time or full-time
· 40% or 7 to 10 million adult children are caring for their parents from a long distance
· 44% of Americans between the ages of 45 and 55 have aging parents or in-laws as well as children under 21
· 41% of baby boomers help older relatives with financial or personal assistance
· American business is losing between $17.1 billion to $33.6 billion per year  because of the direct and indirect costs of elder caregiving

Caregiving is a family affair: 
· 80% of all eldercare is provided by family members
· One of every four households provides help to an older person
· Most caregivers:
· Are reluctant to ask for or use formal help
· Continue to provide care with little support
· May experience consequences to their own health and well being § Use formal services only as a last resort
· Both men and women are caregivers:
· A 2003 study of working caregivers showed 44% were men and 56% women
· Men are more likely to provide long-distance care
· Men more likely to be unable to do business-related travel
· Men are less likely to discuss responsibilities with colleagues
· Women are more likely to provide personal care – ADLs*
· Women are more likely to report depression *ADLs = Activities of Daily Living:  feeding oneself, bathing, dressing, toileting, &  transferring (from a bed to chair, etc)   

Who Me? I`m Not a Caregiver.
“One of the biggest dilemmas for people in the field of caregiving and for  grassroots organizations has been how to reach family caregivers. The majority of family caregivers don`t self-identify. They don`t know that they are caregivers.” A 2001 survey was conducted conducted on Caregiver Self-Identification by the National Family Caregivers Association, a grass roots advocacy organization for family caregivers of people with disabilities and older adults.
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 family caregiver if you help someone who cannot do or is limited from doing any of these things for him/herself:· Checking on older adults by phone or visits
· Driving someone to and from doctor and other appointments
· Communicating with health care providers
· Assisting with managing medications
· Assisting someone to pay bills
· Helping with financial or legal matters
· Arranging for Meals on Wheels
· Contacting or helping someone communicate with organizations such as the Area Agency on Aging or the Alzheimer’s Association
· Helping someone clean their home or arranging for housecleaning
· Assisting someone or arranging for home repairs
· Arranging for home health care or hospice services.  Unless there is a sudden illness or accident such as a fall, caregiving tends to begin slowly and over time take more time and resources.
The health of older adults can be unpredictable with many older adults remaining healthy.  As health declines older adults move toward dependence. A slip, fall or diagnosis of a chronic illness can quickly and dramatically change the life of  an entire family. 
Caregiver’s Checklist   Here is a step by step checklist for caregiving.  You may have other items on your own list. · Assess the situation – “What are the needs?”  Be clear on what the needs are.  Take care of basics first – don’t jump right in to trying to resolve issues until you are clear on what they are.· Thorough recent medical examination.  If you can, get an evaluation from a geriatrician. Ask your doctor to write an order for a functional assessment.· Functional assessment of ADLs by an occupational therapist, nurse practitioner, social worker, home health, or other (ask doctor to prescribe)· Complete the Family Caregiver Assessment. Consider each question. How can this information help you more clearly understand the needs of your family and your role in helping meet those needs?· Prioritize needs. Remember that many external signs of problems could be either medical OR non-medical. When you prioritize needs focus on how they might get met – do you as the caregiver need/have to do them all? Who else could help?· Engage the care receiver to respect their wishes. Caregivers may make assumptions about what their family member needs. It makes sense to clearly identify the needs and address the most important needs first. Often meeting one or two of the most important needs can resolve other related issues.· Organize important information; keep portable set of  important  documents. Set up files, a 3-ring binder, spiral, and other organizing methods:  medical, financial, prescription drugs, insurance, and others.

· Learn about diseases and conditions
· Find help in the community and from others, including family
· Learn about community and internet resources
· Plan for the future (medical, financial and legal)
· Take care of yourself

The Three Most Important Caregiver Tasks  
Caregivers say that these are three of the most important things that you need to do.  If you don’t do these then almost anything else you do won’t be helpful:

1. Set healthy boundaries – ask yourself “what is the worst thing that can happen if I don’t…” then have a backup plan in place.

2. Be aware of your emotions – if you are not in touch with your emotions it WILL impact your health.

3. Ask for help – ask using “I” language, not “you” language. Offer specific options on how someone can help.       

Typical Emotional Reactions of Caregivers  

Although not all caregivers experience all emotions, these are typical emotions that come and go throughout the caregiving experience:

· Anger
· Anxiety
· Depression
· Fatigue
· Guilt
· Hostility
· Resentment
· Stress
· Sense of own mortality and vulnerability
· Sense of abandonmentBarbara Silverstone, in her book, You & Your Aging Parents, says that adult children have to accept “the lost umbrella” of parents who were caregivers and protectors. They may experience:

· Feelings of dread about the future
· Mental and physical decline of older family members
· Past feelings of unresolved conflicts and situations re-kindledHowever it is important to remember that these negative feelings can be balanced somewhat by the benefits of caregiving such as:

· Doing the right thing
· Giving back
· Doing something helpful for someone else
· Resolving old issues with a family member

Guilt is the most the most common feeling caregivers experience:

· Survivor guilt, especially that of the spouse.  “Why them and not me?”
· Usually comes from any or a combination of three sources:
· Haven’t lived up to a parent’s expectations
· Haven’t lived up to some code of ethics or morals such as “Honor thy father and thy mother”
· Haven’t lived up to our own expectations 

Caregiver expectations of what they can do may exceed their available energy and abilities.

Grief starts when the relationships change and loss is experienced. People may experience: 

· Emotional release: crying, angry outbursts, and other behavior
· Loneliness and a sense of isolation
· Physical symptoms: headaches, muscle aches and pains; more frequent colds or other distress
· Panic
· Guilt related to the loss
· Hostility
· Feel ‘stuck’ and unable to resume usual activities

Engaging the Whole Family in Caregiving 
A family conference is tremendously important – get the facts out on the table for everyone to discuss/understand. Getting help from other family members not only helps support the caregiver but also enables the care receiver to spend time with and receive care from other loved ones.  
Caregivers have to realize that many times they are not conscious of the message they are sending that they are in charge, can handle it all, it is your job to do this, etc.

If family members don’t respond right away caregivers must be persistent and keep trying.  Accept whatever help is offered, even if it is not the kind you want, such as money to help pay for care, or help that is less than you asked for. From your assessment of needs, lower priority items may not get done if you cannot find help.

Here are some key points for a family conference:

· Gather together in a neutral place; teleconference only if necessary
· Limit first meeting to direct family members
· Review prioritized needs (refer to medical examinations and other assessments)
· Talk about the future including fears, potential problems, wishes, individual roles and legal issues
· Determine best fit, matching the skills and resources of each sibling or family member
· Share resources and partnerships
· Communicate honestly. Stay away from statements that typically begin with “you” and sound like you are accusing someone of doing something wrong “You are not being responsible!”  “You obviously don’t care about me or our parents!”
· Use “I” messages that are your own thoughts, opinions, and emotions and communicate them calmly
· Address history of working with the parent.

Using “I” Statements to Ask for Help Here are some examples of “I” statements that you might find helpful.  These are ideas to use as you form your own “I” statements.

· “I want to let you know what I have found out about what mom/dad/they need(s) and what we can do about it.”
· “I am concerned that Mom’s/Dad’s care requires more than I can provide myself.”
· “I need help.”  Then be specific of what you need help with
· “I cannot manage this alone.”
· “I feel overwhelmed.”
· Relate future doctor/medical appointments are on (month/day) and (month/day). “ Which can you do?”
· “When are you able to come see about mom/dad/they/him/her  and do some things around the house?  I feel that the responsibility for Mom’s care has been left to me and I don’t think that’s fair to either one of us.”
· “I very much appreciate you listening to me.”
· “I need you to call (Mom)(Dad)(other family member) at least once a (week)(month) to help me out.”                     

Grandparents Raising Grandchildren     Four-and-a-half million children are living with grandparents as primary caregivers. Over 2 million grandparents are raising children under the age of 18. Thirty-eight percent are being raised by grandfathers. Grandparent heads of households have grown by 105% since 1970.

Custodial grandparents are 60% more likely to live in poverty than the average population. Twenty seven percent of children in these homes are living in poverty.

Why is this phenomenon important? When some of these grandparents begin to experience chronic health problems they may need help for themselves and their grandchild. The grandparents may need financial and health assistance.       

How Caregivers Help Older Adults     
Learn how to help the care recipient remain as independent as possible – eating, bathing, medication, signing letters, checks, reading, visits with friends – as long as possible.  Some ways you provide this help include:

· Helping maintain independence and self-sufficiency
· Reducing risk:
· Health:  regular checkups and immunizations to prevent illness:  influenza, tetanus, and others; dental care; diet and exercise (stretching, balance, endurance, and strength
· Safety:  removing obstacles to prevent falls,  checking smoke alarms, checking water temperature; regular driving tests, monitoring citations, observing affects of alcohol

· Using health care, family and community support
· Increasing knowledge of illness or disability
· Reinforcing a sense of productivity and involvement
· Helping make choices to determine the course of his/her own life
· Being supportive
· Bringing a positive attitude
· If necessary, learning how to perform first aid and CPR; lift without injury; use hoyer and chair lifts; do bed transfers and use bathroom chairs
· Taking care of yourself and clearly defining your role and limitations

Resources for Caregivers
· 2-1-1 throughout Texas. Provides information and access to health and human service information  for all ages
· Local Aging & Disability Resource Centers (ADRC)
· ADRC of Tarrant County 1-888-730-2372
· 1-800-252-9240 to find local Texas Area Agency on Aging
· 1-800-677-1116 – Elder Care Locator to find help throughout the U.S.

· www.benefitscheckup.org for an online way to determine benefits for which someone qualifies.

To find this and other information quickly see also:
online educationlegal resourceslinks, FAQs

To schedule a caregiver session in your community at your church, business, library, civic group or other location, call your local area agency on aging or send an email through this website.

Assistance Available through the Area Agency on Aging
Services are funded by local area agencies on aging and vary by county.

Caregiver Services:
· Information and Referral
· Caregiver Education and Training
· Counseling may be available 
· Caregiver Respite
· Help with finding resources and navigating the system

Services for Persons Age 60 and Older:
· Benefits Counseling
· Ombudsman
· Home Delivered Meals
· Congregate Meals
· Other services

Caregiver Stress Management

Wellness is the Goal at All Ages – A Healthy Balance for You and Your Family Member
· Financial
· Security
· Independence
· Flexibility

· Physical
· Nutrition
· Exercise

· Spiritual
· Faith
· Meaning in life

· Emotional
· Friendship
· Connected to others
· Sense of well being
· Part of a family and community

· Mental
· Activities and hobbies
· Problem-solving
· Continuing education.  It is extremely important for caregivers to take care of themselves – and according to survey results many are NOT doing so:

· 91% believe “preserving your health” is a message that should be told to all family caregivers
· 30% exercise regularly since becoming caregivers, compared with 61% who exercised before becoming caregivers
· 47% seek prompt medical attention for themselves compared to 70% who did so before becoming caregivers

Practical Stress Management Tips

Remember that really the only person you truly have control over is yourself!

· Manage stress before the situation becomes a crisis
· Reframe your perception of situations
· Ask for help
· Recognize your history and what triggers your stress response “If you always do what you have always done you will always get what you always got”
· What do you have control over? What can you influence?
· Take care of your physical and mental health
· Have some fun
· Respond – don’t react
· Practice letting go
· Prioritize activities according to their importance and available time. Activity does not necessarily mean productivity
· Decide and “Just do it”
· Recognize the harmful effects of perfectionism and take steps to be more flexible
· Remind yourself about the high cost of worry and the low return
· Be willing to accept that sometimes enough is okay
· Take one day at a time and value it as if it were your last
· Join a support group
· Educate yourself

We chose the aspen tree to represent family caregivers and their loved ones ©Aspen trees appear to be individuals. In reality, they are one organism sharing the same far-reaching root system. These interconnected roots give the aspen resilience, strength and beauty, often in the harsh conditions of winter at high elevations.

Like aspen trees, family caregivers, their aging family members, health and human service providers, and the community are all connected.

Just because you care doesn’t mean you have to do it alone!
Avoiding Caregiver Isolation

Written by:  Zanda Hilger, M. Ed., LPC, Family Caregiver Education, Area Agency on Aging, Revised 2009
Includes materials adapted from As People Grow Older, Jane Oderberg and Sue Smith, 1995 and as cited in the materials.
Permission is granted to duplicate any and all parts of this program to use in education programs supporting family members caring for elders.

Data Sources 
· MetLife Caregiving Costs Study: Productivity Losses in U. S. Business and  National Alliance of Caregiving (Demographics section)
· AARRP Public Policy Institute and  Arizona State University (Demographics section)
· American Society on Aging 2000 (Demographics section, gender)
· National Alliance for Caregiving and Center for Productive Aging Sons at Work (Demographics section, gender)
· U.S. Census 2000 and Administration on Aging  (Grandparents Raising Grandchildren)