You and Your Aging Parent: Helpful Hints for Survival -or -

1. You and Your Aging Parent: Helpful Hints for Survival -or - Caring for An Older Parent: Realities, Ethics, and Love: What Can We Do? Penny Harris, Ph.D.

2. The Demographic Realities: • 36 million older adults in the US today • Life expectancy in 1900 – 47 years old • Life expectancy today – women –81 years men - 75 years; 75,000 centenarians (US Census, 2005) • Five Generational Families • Caregiving has become a normative event • “The Sandwich Generation”

3. Kurt Vonnegut’ Graduation Speech at MIT ( 1997) • “If I could offer you only one tip for the future sunscreen would be it.” • “Get plenty of calcium. Be kind to your knees. You’ll miss them when they are gone.” • “Accept certain inalienable truths: You too will get old. ” • “Respect your elders.” • “Stretch – Do one thing every day that scares you.”

4. Realities of Caregiving: • 44 million Americans providing care to older adults and people with disabilities. • Family members provide 80% of the care for the elderly. • Profile of typical caregiver: 46-year-old woman, married, works full-time, and devotes an average of 18 hours a week to caregiving. • Caregivers are ill-prepared for their role and provide care with little or no support. (AARP & National Alliance for Caregiving, 2004)

5. Impact of Caregiving: • Mental and Emotional Health: • High levels of Depression • High levels of Stress, Frustration, Guilt, Feelings of Helplessness • High levels of Anxiety & Emotional Strain • High rates of Exhaustion • Low levels of Self-esteem • Feelings of Social Isolation • Women fare worse then men

6. Impact of Caregiving: • Physical Health • Poorer health status • Increased chronic health care conditions • Diminished immune response – increase in infections • Increased risk of heart disease • 63% Higher mortality rates (Schultz, R., & Beach, S. (1999). Caregiving as a risk factor for mortality – JAMA, 282)

7. Why Do it? • Out of love – Out of Moral Obligation “We have always been positively the best of friends. I could have had positively the worst day at work. I would come into the house and sit down at the kitchen table and sound off. She never advised, but she truly listened and that was all that was really necessary.”

8. Why Do it? • Out of love – Out of Moral Obligation “Remember the two Vs – vows and values. Honor them. I made those vows 50 years ago and I am not going to break them now.”

9. Why Do it? • Out of love – Out of Moral Obligation “The last month of her life was not really good for her. She had her eyes closed and wasn’t responding very much. I was telling her one night how much I loved her and appreciated everything she had done for me in my lifetime. She opened her eyes and tried to talk, like confirming what I was saying And I said… ‘I know, I understand.’ And that was the last gesture of recognition she ever made.”

10. The Time of Filial Maturity • Central Issues: • Independence v.s. Dependence • Control & Decision Making • Loss: Physical Health, Social & Emotional • Functional Impairment • Financial Strain • Memory Problems

11. Difficult Dilemmas • Driving: Taking the Keys Away? • Going to a Doctor • Depression & Grief • Unsafe Living Arrangements/Environments • Unable to Handle Finances • Long-distance Caregiving • Handling Memory Loss

12. What to do? The Six Ps: Prior Planning Prevents Piss Poor Performance – Don’t Wait Until there is a Crisis

13. What to do? • Assess the Situation (AARP Chart): Physical Health, Appearance and Hygiene Behaviors, Finances, Insurance & Medications coverage, Living wills, Daily Living Activities, Interests/Lifestyles, & Support System • Start the Conversation: The “I Message – Not You Message” • Find a Doctor you and your parent trust & with whom you both feel comfortable. • Family Meetings – siblings, in-laws, grandchildren (may need to be facilitated by health care professional) – outcome should be an action plan

14. What to do? • Make the Living Environment Safe –grab rails in bathrooms, proper lighting, handrails for stairs, dispose of throw rugs, eliminate clutter, safe slippers/shoes, etc. • Pick Battles Wisely • Know the Pressure Points & Roles • Take Time to Listen & Not always be in a Rush

15. What to do? • Patience is a Virtue: Try to understand your Parent’s Perspective • Be Informed • Set Limits • Arrange Financial/Legal Affairs • Treat with Dignity and Respect

16. What to do if there is Serious Memory Loss? • Obtain a Neurological Evaluation • Become Informed about Disease & Available Resources • Get Financial & Legal Affairs in Order • Have a Family Meeting • Include People with Memory Loss in all Decisions & Listen to their Concerns • Join Support Groups • Make sure the Living Environment is Safe • Way-Finding Cues • Keep the Person Active and Involved in Activities of Interest –Keep Mind & Body Active

17. Take Care of Yourself: Care for the Caregiver • Pat Yourself on the Back – You are Doing OK. • Realize YOU can’t do everything alone- it is OK to ask for help. • Consider a support group (either on-line or in person) & Become Informed • Use Respite Care –Time Away to do Something You Enjoy • Find a Doctor YOU Trust and Who will take the Time to Listen to You.

18. Take Care of Yourself: Care for the Caregiver • Learn to be Flexible • Long-distance Caregiver – Use Geriatric Care Manager Services • Use Counseling Services • Exercise on a Regular Basis

19. Take Care of Yourself: Care for the Caregiver • Evaluate Possibility of Financial Assistance • Religion may offer Comfort & Strength • Maintain Social Contacts • Keep a Sense of Humor

20. Final Thoughts • “What kept me going was my devotion to her. I saw how they [his parents] treated me over my lifetime, the loyalty they felt. I learned. I learned that’s what you do with family. You don’t moan and groan about them; you take care of them. You do what you have to do.”

21. Final Thoughts • “You can look at you mother and you can look at this disease, they're entirely different. You remember how sweet and compassionate your mom was, and you look at the disease over here and it is totally out of character, so you try to find some balance.”

22. Final Thoughts • “I love my mother and always have; she was very supportive of me. My caregiving is based on love, though I freely admit there’s times it’s the last thing I want to do. One day she started to say to me something about getting old, and I just told her, ‘It’s ok Ma. It’s part of the process. It’s part of the learning experience.’ ”

23. Suggested Resources • Books: • Delehanty, H., & Ginzler, E. (2005). Caring for your parents: The complete AARP guide. New York: Sterling Publishing Company. • Abramson, A. (2004). The caregiver’s survival handbook. New York:Berkeley Publishing Group. • Kuhn, D. (2003). Alzheimer’s early stages. Alameda California: Hunter House Publishers.

24. Suggested Resources • Internet Resources: • Family Caregiver Alliance – (415-434-3388) –www.caregiver.org • AARP – www.aarp.org • Fairhill School for Caregivers –(216-421-1350) -www.fairhillcenter.org/schoolforcaregivers.htm

25. Suggested Resources • Internet Resources: • North Coast SeniorsConnect.Org –www.seniorsconnect.org • Alzheimer’s Association (216-721-8457) – www.alz.org • National Association of Professional Geriatric Care Managers (520-881-8008) www.caremanager.org

26. Suggested Resources • Internet Resources: • A Place for Mom – (866-666-3239) -www.aplaceformom.com • Western Reserve Area Agency on Aging- (216-621-8010)-www.psa10a.org/default.asp • Ohio’s Office of the State Long-Term Care Ombudsman - (800-282-1206) -www.ELDERRIGHTS@AGE.STATE.OH.US