Tools For Caregivers Accepting Help

1. Tools For CaregiversAccepting Help April 21, 2012 Renée Goldsmith Benson, MA, LMSW Executive Director, Catholic Charities Caregivers Support Services 518-449-2001 www.cccaregivers.org

2. About Catholic Charities Caregivers Support Services Supporting caregivers for 25 years with one simple mission: “To make life better for those who care for friends and relatives in need” At other agencies, the caregiver is the “secondary client.” At this agency, our focus is on the caregiver.

3. Family Caregiver Defined as “an unpaid friend or family member who helps or provides care to an individual who needs assistance to manage a variety of tasks” Is this accurate? Does this adequately capture the complexity or stressfulness of your role?

4. The role of caregiving is complex It can include: • Assisting someone with tasks who resists • Helping with medications that may be needed several times a day in several ways: eye drops, pills, inhalers, etc. • Learning new skills, making decisions, dealing with scheduling challenges, looking for side effects to medications, being calm in the face of anxiety. • Physical exhaustion: From lifting, transferring, too few breaks. • Emotional wear: Worry, fear, stress, grief, loss, and guilt. • Emotional rewards: Satisfaction, appreciation, bonding and love.

5. And let’s not forget the rest of life’s activities. Caregiving situations may be considered from more than one perspective. Many times there are multiple needs to keep in mind. There are the needs of the caregiver and care recipient and other’s too. (Employer, bio-children, teachers, etc…) Solutions and challenges are both the result of physical, emotional, mental, and environmental factors. The unique combination of stressors for families may include: social isolation, lack of collaboration by systems (such as medical systems, facility systems, insurance/Medicare systems, and complicated family systems), poverty, housing problems, intergenerational gaps, disruption of the family, difficulty trusting other family members, transportation, employment.

6. There is a dynamic interplay with some areas that is unique to the caregiver, the care receiver and the other life roles. Many systems don’t see or recognize these unique challenges, adding to a deeper sense of frustration, invisibility, and isolation. All three members of this triad experience emotional pulls over laden with guilt, fear, and loss. All three experience a disruption in their plans and expectations. When the care receiver undergoes a transition, numerous disruptions and changes oftenoccur which add to the complexity. Overlap of issues The unique interplay Caregiver • Care • Recipient Other life roles and responsibilities.

7. Recent Research • American Psychological Association recently published an important synopsis of new caregiver stress data based on the latest Stress in America survey (http://www.apa.org/news/press/releases/stress/2011/health-risk.aspx).  • The 2011 survey found that several groups of people in particular — caregivers and those living with chronic illness — are at heightened risk of experiencing serious consequences from stress that is too high and is taking a toll on their emotional and physical health.

8. You know you are stressed when… • You start feeling resentful • Begin feeling depressed or physically ill • Have changes in sleep patterns • Have changes in eating patterns • Become short tempered, irritable, edgy • Lose your ability to focus or to be attentive • Experience increased forgetfulness • Get tired of caring • Feel overwhelmed, trapped, hopeless

9. Too much stress over too long a period can lead to caregiver fatigue or burnout

10. Yes, You Can Beat the Burnout The research suggests that burnout is a huge problem and something that public health administrators may need to work on in a structured systemic manner. BUT YOU CAN do some things too to help yourself. Specific problems arising in each caregiving circumstance must be addressed at a practical level.Keep solutions as simple as possible. Brainstorm with friends and family members, talk with other experienced caregivers for their ideas, create a helping hands website to recruit help. http://www.lotsahelpinghands.com/

11. Make the most of existing systems of care/support, including healthcare, social services • Access services available to you. • Call for community resources using United Way’s 211 number or use the NY Connects number 518-447-7177 for Albany County. • Develop effective strategies for communicating effectively with healthcare professionals. • Ask questions, be prepared with what you wanted to talk about written down so you won’t forget. • Use respite, consumer directed or otherwise.

12. Give permission • Give permission to yourself for self-care. Eat right, exercise and sleep well. Take breaks from caregiving. • Give permission for others to help when offered. Say Yes! Encourage the use of all available supports as early in the caregiving process as possible • Give permission to yourself to ask for help. Many times people want to help but just don’t know what to do. • Give permission to yourself accept all the feelings that come up. Feel the emotions without guilt.

13. Join a group • Knowing you are not alone • Participating with others for problem-solving or designing solutions and tracking the impact of these approaches • Sharing insights about family role restructuring • Helping family members adopt a future orientation in order to anticipate transitions • Building supportive relationships with others who understand your situation and your needs as you live this caregiving role

14. Consider peer coaching or counseling to… • Enhance coping with sadness, anger, fear, guilt and dread in response to caregiving and a care recipient’s illness • Increase empathy toward and tolerance of a care recipient’s emotional and behavioral problems • Enhance problem-solving skills to address challenges with caregiving, with family dynamics, and with navigating care systems

15. Make time - Use respite • Take a breather, a break, some time off, and hit the pause button. Schedule a vacation. Get a massage. You cannot be super man or super woman.

16. Uncomfortable with leaving? • Ask a family member or friend to stop by and visit your loved one while you take a break. • Short breaks help too! • Try an hour or two and: visit the gym, sit quietly meditating or in prayer, practice yoga or tai chi. • Take a 20-minute break in order to take a walk or write in your journal. • Have a smoothie or hot chocolate with a friend.

17. Summary • Don’t underestimate the drain you experience as caregivers. • Don’t ignore signs of stress. • Helpful options include: • Keep solutions simple. • Set up a simple way for others to help, such as a helping hands website to accept and ask for help. • Make the most of existing systems. • Practice healthful living. • Accept that there are things you cannot change and give yourself permission to get in touch with your feelings. • Talk with others, join a group. • Arrange support through counseling, church, coaching, etc. • Use respite. Short AND long breaks are necessary to your health.

18. Would you like to learn more about our agency’s services? • Find us on the Web at www.cccaregivers.org • Call us at 518-449-2001 SERVICES • Respite, with any level of provider service or assistance for paying a friend or relative to provide respite. • information and assistance, and telephone support in 14 counties • Support Groups in Albany and Rensselaer Counties • New: Adult peer caregiving-to caregiver friending