Carepartners Guidebook | Page 2

TABLE OF CONTENTS

MANAGING CARE AND GETTING PROFESSIONAL SUPPORT......................................... 1
Building Your Personal Advisory Team................................................ 2 The Carepartner Plan: A Guide to Assessing and Prioritizing Your Needs................ 4 Understanding Advance Healthcare Planning.......................................... 8 Compassionate Allowances............................................................ 14 The Social Worker’ s Role............................................................... 14
Understanding Levels of Home- and Community-Based Services and Residential Care.................................................................. 17
CurePSP Support Groups............................................................. 22 When to Stop Driving: The Hard Conversation.......................................... 24 Understanding Palliative and Hospice Care............................................ 26 Caring from a Distance................................................................ 30 Respite Care.......................................................................... 31
BEING A CAREPARTNER........................................... 34
Keeping Families Strong..............................................................
35
Talking to Children and Grandchildren................................................
37
Facing Loss and the End of the Caregiver Role.........................................
41
The 7 Deadly Emotions of Caregiving..................................................
44
Make Meaning to Stay Positive
.......................................................
47
MAKING PLANS..................................................... 49 Estate Planning....................................................................... 50 CurePSP Brain Tissue Donation Program.............................................. 53
FROM OUR FAMILIES............................................... 57
I.
Patience........................................................................
58
II.
A Carepartner’ s Comments to the 10 / 23 / 2009, Chicago CurePSP Conference...... 59
III.
Products That I Remember Fondly, and Newer Ones from 2018................... 62
IV.
Caregiver Checklist............................................................ 63
V.
Products and Practical Pointers Based on Experiences with Eileen................ 64
VI.
Tips for Taking Care of Your Loved One’ s Emotional Needs.......................
65
VII.
Taking Care of Yourself..........................................................
66
VIII. Desirable Attributes of Home Health Agencies, Aides, and Nursing Homes...........
67
IX.
A Life Well Lived................................................................
68
X:
Thoughts about Hospice........................................................ 69