Caregiver. The Invisible Patient. Jody O Doherty, LCSW

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1 Caregiver The Invisible Patient Jody O Doherty, LCSW

2 Caregivers: Member of the Team Vital members of the team Invisible patients Valuable but vulnerable resource

3 Caregiver Tasks Assisting patient in accessing treatment Obtaining and maintaining information about illness, treatment, side effects Communication with health care providers Help with ADL s as needed Emotional support Transportation Meal preparation Additional household tasks Child care Shopping Management of finances

4 Increase of Caregiver Burden Hospital stays are shorter Daunting and complex equipment or treatments offered at home Cost driven length of stay decreases discharge planning time Aging population More women in the work force Families are more geographically dispersed Urban versus rural setting Economic limitations in families to have access to resources or inability to take time from work

5 Caregiver Stress: Emotional Impact Anxiety overwhelming sense of responsibility or helplessness Guilt Fear Depression Feelings of isolation - I m in it alone Stress -Loss if time for leisure or relaxation Frustration/ Anger/Resentment

6 Effects of Caregiving on Health and Well Being Sleep deprivation Poor eating habits Failure to exercise Failure to stay in bed or relax when ill Post pone medical appointments Risk for excessive use of alcohol, tobacco, or recreational drugs Increased risk for depression

7 Care for the Caregiver First step is for caregivers and the medical team to acknowledge the value and significance of the caregiver role and take time to support and identify caregivers needs as well as patients. Only when you first help yourself can you effectively help others. You cannot stop the impact of chronic/progressive illness or debilitating injury..but you can take responsibility to address your own needs so you can continue to care well for your loved one.

8 Identify Personal Barriers Need to prove self worthy of patient s affection? Believe it is selfish if I put my own needs first? Have trouble or feel inadequate asking for help? Feel responsible for patient s health? If I don t do it no one will.? or no one else can do it right! Need to attempt to do what cannot be done? Trying to control what cannot be controlled? Looking for attention and respect I deserve? Negative self talk.?

9 Feeling Overwhelmed Try not to make important decisions when upset Take time to sort things out breathe! Give yourself permission to do something for yourself each day Talk your situation over with other who is levelheaded and helpful or seek out someone that could provide ongoing support Self Talk How I perceive and respond to an event-glass half-full or half-empty Look at what you have and not just at what is lacking Ask for help..

10 Feeling Angry Try to see the other person s point of view = empathy Express anger in an appropriate way before it gets worse I feel..when you do/say.. Find safe ways to express anger Get away from the situation for a while

11 Feelings of Guilt Talk to others in a similar situation Don t expect yourself to be perfect Don t dwell on mistakes Let go of things you cannot control serenity prayer

12 Fear and Anxiety Learn about what to expect - information can help you feel a sense of control Learn techniques to manage anxiety relaxation/mindfulness Talk to someone Set small, achievable goals One day at a time.. Mental health services

13 Depression Take time to acknowledge and grieve your losses Express your feelings Make time for stress management techniques Seek mental health professional Find respite care Take care of your physical needs, sleep, nutrition Avoid cigarettes, alcohol or recreational drugs

14 Resources Contact the medical team for patient s needs Contact your oncology social worker for help with problem solving and resources Attend a caregiver support group or on line chat groups Seek community resources to meet concrete needs On line resources for caregiving

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