1. Elder Care 101 Issues, Resources, & Stress Management
Zanda Hilger, LPC

2. There are only four kinds of people in this world:
Those who have been caregivers;
Those who currently are caregivers;
Those who will be caregivers, and Those who will need caregivers. -Rosalynn Carter
Quickly review – this is an issue that will impact everyone at some point in life

3. Who is a Caregiver?
You are if you help someone age 60 or over who is limited in routine and daily activities of living
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
Review quickly….perhaps highlighting those areas that many caregivers often do and think “I am taking care of someone I love so I don’t consider it caregiving.”
Possible comments to make:
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.
Basically if someone can’t do what they did earlier in life and you step in to help then you are a caregiver
The biggest challenge is helping caregivers “self identify,” find information and accept help

4. Family Caregiving
Family caregivers are the foundation of long-term care nationwide, exceeding equivalent Medicaid long-term care spending in all states.

5. Family Caregiving Data See handout
Demographics
Economics of Caregiving
Impact on Family Caregiver's Health
Caregiving and Work
Caregiver Self-Awareness
Quickly review the statistics on this and the next slide.
Comments
It is helpful for you to know where you belong in the ‘frame’ of other caregivers. You are not alone and there is a growing number of people who are caring for older adults.
80% family caregiving.....at no cost to the government but to individuals and families!
Most caregivers WILL experience health issues – and depression is a major problem
Formal services often only accessed in a crisis – get help sooner!

6. Family Caregiving Statistics
$375 billion a year - The value of the services family caregivers provide for "free," when caring for older adults .
Twice as much as is actually spent on homecare and nursing home services combined ($158 billion).

7. Family Caregiving Statistics, 2
The typical family caregiver
Approximately 66% of family caregivers are women.
49-year-old woman caring for her widowed 69-year-old mother who does not live with her.
Married and employed.
More than 37% have children or grandchildren under 18 years old living with them.

8. Family Caregiving Statistics, 3
20 hours per week- the average number of hours family caregivers spend caring for their loved ones
13% of family caregivers are providing 40 hours of care a week or more.

9. Challenge of Family Caregivers Seeking Help
Most caregivers
Are reluctant to ask for or use formal help
Continue to provide care with little support
Frequently experience consequences to their own health and well being
Use outside services only as a last resort
Quickly review the statistics on this and the next slide.
Comments
It is helpful for you to know where you belong in the ‘frame’ of other caregivers. You are not alone and there is a growing number of people who are caring for older adults.
80% family caregiving.....at no cost to the government but to individuals and families!
Most caregivers WILL experience health issues – and depression is a major problem
Formal services often only accessed in a crisis – get help sooner!

10. Differences by Gender
Increasing number of men caregivers for wives and parents
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)
Comments:
Personal care = bathing, dressing, feeding, etc…what are known as Activities of Daily Living ADLs. If they can afford, men may be more likely to pay for this care provided by someone outside the family.
Although this slide refers to the workplace it also demonstrates what typically happens: women provide person care more often; men may become depressed but don’t talk about it or seek help with emotional aspects of caregiving.

11. Statistics on Male Family Caregivers -
A longitudinal assessment from 1997 to 2009 found a significant increase in the number of men taking on caregiving roles
In the last 15 years, the percentage of men caring for loved ones with Alzheimer's or dementia has more than doubled, from 19 percent in 1996 to 40 percent in 2009, according to the Alzheimer's Association
Male family caregivers are more likely to use the Internet as caregiving resource, but are less likely than female family caregivers to attend caregiver training

12. Important Caregiver Tasks
Set healthy boundaries
Be aware of emotions
Ask for help
Comments:
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.
Regarding boundaries – ask yourself “what is the worst thing that can happen if I don’t…” then have a backup plan in place. Also realize that personality does not change as we age unless impacted by a physical change in brain physiology or chemistry. If your aging relative was a difficult person all their lives that will continue!
Regarding emotions – if you are not in touch with your emotions it WILL impact your health
Regarding asking for help – ask using “I” language, not “you” language. Offer specific options on how someone can help.
Slide speaks for itself but you can add own comments, refer to previous slide, etc.

13. Guilt Caregiver expectations may exceed their
The most common feeling caregivers experience
"Guilt feelings are inevitable...when parents (and others) reach the stage of needing care and we can't fulfill every need that they have, we feel very guilty.” Robert Butler, MD, noted expert in the area of mental health and aging
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 other’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
Very often at some level we feel we haven’t lived up to our own expectations.
Try to detach – step outside the situation at times – here a support group, counseling, etc. can be very helpful
Caregiver expectations may exceed their
available energy and abilities!

14. Caregiver’s Checklist
Assess the situation – “What are the needs?”
Thorough recent medical examination
Functional assessment of ADLs by an occupational therapist, nurse practitioner, social worker, home health, or other (ask doctor to prescribe)
Complete Family Caregiver Assessment
Prioritize needs
Engage the care receiver to respect their wishes
Organize important information; keep portable set of important documents
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
Comments:
Here is a step by step checklist for caregiving. You may have other items on your own list. Goal is best care possible as long as possible.
Be clear on what the needs are. Take care of basics first – don’t jump right into trying to resolve issues until you are clear on what they are.
Regarding medical – if you can, get an evaluation from a geriatrician (doctor specializing in geriatric medicine). Ask the doctor to write an order for a functional assessment.
Remember that many external signs of problems could be either medical or non-medical.
Prioritize the needs: do you the caregiver need to do them all? Who else could help?
Organize: set up files, a 3-ring binder, spiral, and other organizing methods: medical, financial, prescription drugs, insurance, and others
Plan with the care receiver not for them……emphasize that you want them to be safe and as healthy as possible while respecting their wishes. A good question is “what do you want right now?” Number one emotion of older adults is fear of loss of independence.
Engage the entire family early – don’t wait for them to volunteer, give them options as to how they can help
We have education modules that cover many of the items on this list through seminars and online.

15. Managing Caregiver Stress
Breathe!
Use relaxation techniques
Practice letting go
Prioritize activities according to 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 of 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

16. Family Meetings – Getting Help within the Family
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
Comments: (May have to refer to this and next slide with script prompts, depending on time, without detail review.)
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 an 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.
From your assessment of the needs, lower priority items may not get done if you cannot find help.
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.
Be careful about involving non-blood related family such as in-laws unless they are the ones who will be providing the care. Each family has to decide: “Who’s responsibility is this?”

17. Examples of What to Say and How to Ask for Help Using “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.”
“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.”
Comments:
These are just possible statements to use as you form your own.
Avoid “you” messages!!!!

18. “Caregiving calls on you in a way nothing else does
“Caregiving calls on you in a way nothing else does. But it shouldn’t be the all-encompassing piece of a person. If you fall apart, what happens to your loved one?”
Suzanne Mintz, Founder and Ex-President,
National Family Caregivers Association,
Now Caregiver Action Network
You’ve got to have a life and take care of yourself or you won’t be able to be there for your care recipient and the rest of your family!

19. Caregivers Can Help Older Adults By
Helping maintain independence and self-sufficiency
Helping them build resilience
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
Learn how to help patient remain as independent as possible – eating, bathing, medication, signing letters, checks, reading, visits with friends – as long as possible.

20. Resources For Caregivers
Call
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
to find local Texas Area Agency on Aging
Elder Care Locator to find help throughout the U.S.
Online
for an online way to determine benefits for which someone qualifies.
To find this and other information quickly
Go online to:
online education, resources, links, FAQs
Review
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 from

21. Services for persons age 60 and older
What Assistance is Available through the Area Agency on Aging (AAA)? Varies by County
Services for persons age 60 and older
Caregiver Services
Benefits Counseling
Funds Ombudsman program in skilled care nursing/rehabilitation centers
Helps fund MOW “Home Delivered Meals” and “Congregate Meals” in senior centers
Other services
Information and Referral
Caregiver Respite assistance and referral
Help with finding resources and navigating the system, especially through ADRC
Provide brochures and handouts, when possible.
Review and briefly explain the services
211 is helpful when you just need the phone number for an agency
Services funded by local are agencies on aging with federal funding through the state and local resources

22. Information, Assessments, and Tools http://www. familycaregiversonline
Under Checklists
Elder Care Assessment
Long Distance Assessment
Also see online Education, Legal, FAQs, and other links

23. Just because you care doesn’t mean you have to do it alone
We chose the aspen tree to represent family caregivers and their loved one ©
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

24. Includes materials adapted from various sources.
Written by: Zanda Hilger, M. Ed., LPC, Family Caregiver Education, Area Agency on Aging, Revised 2016
Includes materials adapted from various sources.
Permission is granted to duplicate any and all parts of this program to use in education programs supporting family members caring for elders.
Go to for more information about this and other training programs, internet links, legal forms, fact sheets and more.
Data sources below and as cited in the slides:
MetLife Working Caregivers and Employer Health Care Costs and National Alliance of Caregiving
AARRP Public Policy Institute and Arizona State University
American Society on Aging
National Alliance for Caregiving and Center for
Productive Aging Sons at Work
U.S. Census 2000 and Administration on Aging