MDA ALS Caregiver’s Guide
• Acknowledgments
• Foreword
• Introduction
The Journey • “Something From Within” • MDA’s Fight Against ALS
• 1 The ALS Caregiver
What Is ALS? • What Can You Expect? • The Stages of ALS • The Role of the ALS Caregiver • Caring for the Caregiver • “A Caregiver’s Bill of Rights” • Rewards of Caregiving • “Rules for the Care and Treatment of Caregivers” • Resources
• 2 Daily Care of Your Loved One With ALS
Knowing What to Do • Accessibility at Home • Accessibility Outside the Home • Alternative Therapies • Bathing • Blood Clots • Cognitive Changes • Constipation • Contracture • Coughing • more...
• 3 Respiratory Issues
Just Breathe • Underventilation Dangers • Signs of Respiratory Insufficiency • Simple Ways to Minimize Respiratory Problems • Coughing • Assisted coughing • Emergency! Respiratory crisis • Assisted Ventilation Options • Discussing options together • more...
• 4 Communication Issues
Stay in the Conversation • Losing Speech Ability • Simple Solutions • Voice Banking • Planning • Role Changes • “The Right Words” • The Telephone • High-Tech Solutions • Resources
• 5 Nutrition Issues
Maintaining Weight • Maintaining Calories • Eating • Drinking • Choking • Clearing the clog • Avoiding choking episodes • Unexplained choking • Feeding Tubes • When to get it • more...
• 6 Emotions
Learning to Cope • Abuse • Acceptance & Coping • Anger • Anxiety • Attitude • Burden & Rewards • Caregiver Emotions & Stress • Children • Young children • more...
• 7 Financial, Legal & Medical Issues
Get Your Affairs in Order • Finding Funds — Private Sources • Finding Funds — Government Sources • “Benefits Counselors: Who Are They and Do I Need One?” • Help With Health Care & Equipment Costs • Private medical insurance • Medigap & supplemental insurance • Long-term care insurance • Coverage denial • Hospice • more...
• 8 Finding Caregiving Help
Ask and Receive • Hiring Caregivers • Agency help • Hiring aides directly • Managing caregivers & helpers • Asking for Help From Friends and Family • “How to Cope: Just Say Yes” • Children as helpers • Long-distance caregivers • Share the Care Circles • more...
• 9 End-of-Life Issues
Saying Goodbye • Practical Preparations • Talking With Your Loved One About the End of Life • “Saying Kaddish” • Rites and Rituals for the End of Life • Grieving the Loss • “Confessions of a Recovering Caregiver” • Resources
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