Summary: A rambling conversation with Linsey about the challenges, both emotional and systemic, of being an advocate for a loved one who becomes ill or disabled.

Guest: Linsey, a healthcare worker who has also been a health care advocate for a family member.

Feedback: navigatingdisabilitywithme@gmail.com

Notes:

1. How do many families feel when facing being an advocate? Family members want to provide love and safety so they may feel anxious and vulnerable, or feel out of control. They're being asked to make important decisions for a loved one when they are in shock themselves.
2. Write things down - team meetings, updates from staff etc.
3. Take time to process new information but also don't hesitate to ask questions.
4. Most hospitals/organizations will ask you to appoint one person as the advocate/decision maker.
5. How do you think one should go about selecting an advocate? What values should they have and what discussions should you have with them ahead of time? Is a medical professional necessarily the person to choose?
6. If you can select an advocate ahead of time make sure they share your values. Are they strong under pressure? Do they have good communication skills? Are they able to ask questions and stand up for you? Medical knowledge is a plus but not a necessity. Ask yourself how does this person emotionally regulate? Can they stay grounded when stressed?
7. Advance directives/living wills can be temporarily overridden or delayed by grieving families. Which is why you need a grounded advocate with good communication skills to look out for your wishes.
8. Talk to your family/advocate about your values and wishes!
9. As a health care worker, what do you wish families understood about our health care system?The system is stretched and it's imperfect. Both money and practitioners are stretched thin.
10. Gaps are not intentional - whether it's in care or communication. Practitioners are doing the best they can.
11. Families often have to ask the same question more than once due to the fragmented system. Try to not get frustrated!
12. It's not fair but families and clients have to be patient and polite. Remember that staff often feel like their hands are tied in being more effective due to workload.
13. As a granddaughter, what surprised you about how the system actually feels?
14. Waiting for things feels like it takes forever. The impact of emotion is so much bigger when it's your family member. There's a struggle with what the outcome will be. It's hard to let go of staying at her bedside overnight when you know all the steps that must be taken for high quality of care, to trust that they'll all be done.
15. What did you think you knew professionally that turned out to be incomplete when it was your own family?
16. You understand the process but it's exhausting to live through the emotional impact. Big time decision fatigue. Gave new understanding of why family/advocates need time to make decisions. Surprised by how much support other family members would need. The stamina needed was significant. The experience built empathy for patients and families.
17. The importance of trauma informed care became obvious. Frankly all people/professions could benefit from trauma informed care training
18. What are common mistakes families make when advocating?
19. It's the care team's job to lead and react, not the family's job to be "easy". But don't wait too long to speak up with questions and concerns! Always be polite and non-aggressive. The team knows that the aggression/yelling etc. is from a place of fear and loss of control, however, it makes a tense situation worse.
20. Any aggression is flagged and all team members are made aware, so don't get yourself flagged this way.
21. Look out for yourself through all this: sleep, food, sunshine etc. Talk to someone about what you're going through.
22. Look to the social worker for help on emotional but also practical issues.