Caring for Mom and Dad: What Do You Need to Know? Laura Wilgus Baylor School of Social Work Colloquium Presentation May 5, 2009

Objectives By the conclusion of this presentation, you should: Understand the importance of education of filial caregivers Be able to identify five themes of educational needs of children caring for their parents Have the outline of a model for how an educational program for filial caregivers might look in a congregational setting

Agenda Internship site Research question Why is this important? Methodology & sample Strengths & limitations Caregiver educational needs COAP

FBC Woodway About 4200 members, 800 of which are 60+ My tasks included individual counseling, planning community building activities, creating assessments, etc. Looking for ways to expand services to older adults and caregivers

Your Caregiving Experiences

Research Question What are the caregiving related educational needs of adult children with aging parents at First Baptist Church of Woodway?

Why is this important? 95% of older adults are in the community (Calvano, 1998) Family is primary source of help (Center on an Aging Society, 2005) Largest portion (44%) of caregivers are adult children (Center on an Aging Society, 2005) Caregiving can be physically and emotionally taxing (Dobroff, Zodikoff, Ebenstein, & Phillips, 2003) Caregivers feel unprepared to provide care (Calvano, 1998; Dobrof, et. al, 2003; England, 2001) Education benefits caregivers and those receiving care (Calvano, 1998; Mains, Fairchild, & Rene, 2006; Dobrof, et. al, 2003)

Methodology and Sample 2 focus groups Adult children of aging parents Aging parents

Strengths and Limitations Strengths Both groups identified same five themes Insight into possible educational needs of filial caregivers in general population Themes match existing educational programs Limitations Not generalizable Culturally and racially homogenous Gender representation All in aging parents group live in assisted living facility

Five Areas of Educational Needs Legal/Financial Information Knowledge of Resources Safety Communication Skills Emotional Support

Legal/Financial Information Medicare and Benefits Eligibility Advanced Directives and DNR Veteran and Survivor Benefits Medicaid Planning, Will and Trust Preparation, Powers of Attorney, Guardianship, and Probate “I find it easier to turn financial matters over to my daughters.” “It is so important for children to understand those [legal and financial] things.” “That’s what sons are for!”

Knowledge of Resources “Information about care options is invaluable, especially when you don’t have a lot of time to make a decision.” Home Health Adult Day Care Independent Living Assisted Living Skilled Nursing Care Dementia Care Hospice

Safety Making the Home Safe – “We recently had a situation with [my father’s] walker and were told to move rugs that were in the home that he could trip on. I never would have thought of that, but little things like that are helpful.” Warning Signs of Abuse/Neglect in the Nursing Home and at Home Medication Safety Driving – “I worry about people out there, but I cannot get the keys away from [my dad]. I mean, I can’t!” – “So many times I witnessed that he was a danger to other people on the road and to himself, but I didn’t know what to do.”

Communication Skills Conflicting Opinions about Care – “All siblings need to come together and be on the same side, but when you have siblings disagreeing, the parent can easily side with the sibling who supports whatever he wants to do.” Communicating with Older Adults – “When I try to talk [to my dad], I try to raise my voice and he tells me not to yell. It’s very difficult to carry on a conversation and it breaks up our relationship because we used to talk all the time. I miss that.” – “It’s not just hearing, but also understanding...sometimes they hear, but they don’t understand.” Communicating with People with Dementia Discussing Spirituality

Emotional Support “Even providing a little bit of care can be hard on people because they aren’t used to that role.” “Caregiving was really hard on me. Even now, when I think about it, I wonder if I did the right things.” “My mother would say things that were really hurtful to me and you need some way to handle this, because it is very upsetting...I didn’t know how to handle it.” “If you don’t take care of yourself, you can’t take care of anybody else.” “There are so many things that all of us [caregivers] go through that are so similar...if we know that there are similar things going on we can kind of lean on each other or cry on each others’ shoulders or help each other.”

C hildren O f A ging P arents: An Educational Support Group Modeled after MOPS Meet monthly or bimonthly Small groups Speaker, then group discussion (see handout for speaker ideas)

Social Work Implications Educate caregivers Educate coworkers Educate congregations Remember: caregivers are very important volunteers

Discussion and Questions