Guide to Other Chapters:  
Table of Contents
Introduction
1: What Is Duchenne MD?
2: Getting the Diagnosis
3: Sorting Out The White Coats
4: Your Child's Physical Needs
5: The Future—Research Points the Way
6: Your Child's Emotional Needs
7: Your Child's Education and Future
8: The Family
9: When You Need Help
10: Saying Good-Bye

General MDA Resources >
 
Chapter 10: Saying Good-Bye
In Chapter 10:
photo: wheeling down the road
Preface to Chapter 10 | Medical Decisions | Last Wishes | Hospice  
Legal and Financial Issues | Saying Good-Bye | The Grief Process 
Siblings | Memorials | General MDA Resources 

HOSPICE

"I'm glad for the normal life I lived. . .. One of the best things that happened to me was staying in public school where I could meet people, make friends, and do things non-handicapped kids would do. . .. A lot of people have given me the support to overcome my disabilities, and I want to thank you for all of your support all these years."

--22-year-old with muscular dystrophy

Caring for a person with advanced DMD at home can be tremendously difficult. A hospice can provide home care services. A hospice location can also be a comfortable setting for the last few months or weeks of a person's life.

Hospice care focuses on maintaining the quality of life for the terminally ill person, while a hospital may focus more narrowly on medical measures. Hospices also provide caring services for the whole family.

Hospice care is available through many private insurance plans, Medicare Part A and some state Medicaid programs. Medicare requires a doctor's opinion that the person's life expectancy is less than six months, though coverage can be extended past that time without penalty.

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