Caring for Loved Ones at Home
An Illustrated, Easy-to-Follow Guide to Short or Long-term Care 4th Edition.
References
The following is a selection of recommended books. Some were used to research and prepare this book. They certainly do not include all the books available on the various subjects in this book. My first recommendation is that you check your local bookstore and library for the most recent and up-to-date books on the topic you are most interested in.
When checking any source for health care information, expect to find information that might be unsettling. The information may tell you things you didn't expect or didn't want to know and it may be written for a professional audience rather than for patients and families.
Some of the books in this reference list may have more recent, up-dated editions. If a particular author interests you, check the library for their other books.
The companion book to this one is Family Hospice Care, which lists references more specific to hospice care.
Books
Appearance Concepts Foundation of Canada. (1990). Changes, choices and challenges. Toronto: Appearance Concepts Foundation of Canada. This book gives practical information on using scarves and wigs to cover one's head as well as information on skin care for women who have had radiation or chemotherapy.
Berman, Claire. (1995). Caring for yourself while caring for your aging parents: How to help, how to survive. New York: Henry Holt. This book discusses the stresses and needs of caregivers.
Callwood, June. (1986). Twelve weeks in spring. Toronto: Lester and Orpen Dennys. The story of how 60 friends and colleagues took care of Margaret Frazer in her own home.
First Aid Books: Any first aid book (and course) to help keep you up-to-date on emergency procedures, CPR and mouth-to-mouth resuscitation such as those by the Canadian Association of Emergency Physicians, Red Cross, St. John's Ambulance or YMCA.
Haller, James. (1994). What to eat when you don't feel like eating. Hantsport, Nova Scotia: Robert Pope Foundation. A cookbook for people preparing food for others who are suffering a serious illness.
Larson, David E. (Ed.). (1996). Mayo Clinic family health book. (2nd ed.). New York: William Morrow. Extensive illustrated home medical reference including diagnosis, prevention, treatment alternatives and more.
Mace, Nancy L. and Rabins, Peter V. (1999). The 36-hour day: A family guide to caring for persons with Alzheimer's Disease, related dementing illnesses and memory loss in later life. (3rd ed.). Baltimore, MD: Johns Hopkins Press. A text for families caring for loved ones.
McLeod, Beth W. (1999). Caregiving: The spiritual journey of love, loss, and renewal. Etobicoke, ON: Wiley.
Neal, Margaret B and Chapman, Arthur C. (1993). Balancing work and caregiving: For children, adults and elders. Thousand Oaks, CA: Sage.
Perry, Anne Griffin. (1998). Pocket guide to basic skills and procedures. New York: Mosby Year Book. More complete information on all the techniques suggested in this book from a nurse's perspective.
Silverman, Harold. (Ed.). (1998). The pill book: The illustrated guide to the most prescribed drugs in the United States. (8th ed.). New York: Bantam Doubleday Dell.
van Bommel, Harry. (2002). Family hospice care. Toronto: Resources Supporting Family and Community Legacies Inc. Written to help family and friends take care of people at home who are dying.
The Internet
The following Internet links may be helpful to those of you interested in more information about home care. I have picked just a few sites that have excellent resources and extensive links to other related sites.
A note of caution: There are thousands of Web sites offering health care information. The information on some sites may not be accurate or current. Check to see who produces the Web site, their qualifications and their credibility before assuming their information is correct.
Also, when checking the Web, or another other source, for health care information, expect to find information that might be unsettling. The information may tell you things you didn't expect or didn't want to know and it may be written for a professional audience rather than for patients and families.
For general and advanced health information, good starting points include:
Caregiver Network Inc.
Developed for people who are caring for elderly family members and friends.
Dr. Koop's Community
An interactive health site with daily updates and news.
Health Canada's Information Site
An extensive site with many links to other reputable sites.
Canadian Health Network
http://www.canadian-health-network.ca
A general health information site with links to many other health related sites.
Mayo Clinic.Com
An outstanding site for general health information
UpToDate
A clinical reference for physicians who subscribe but also includes patient information that is updated regularly.
Finding Out About Local Home and Health Care Programs
Home care is a group of services to help people live at home when they are ill or recovering from an illness or surgery rather than staying in a hospital or long-term care facility.
Basic Services
Visiting nurses
Home support (help with homemaking such as light housekeeping, bathing, dressing, shopping, cooking, laundry)
Physiotherapy
Occupational therapy
Respiratory therapy
Social work counselling
Nutritional counselling
Housing registry
Personal emergency response systems (e.g., electronic necklaces)
Complex Services
Home intravenous antibiotic therapy
Life support/ventilator assistance systems
Services for children with complex needs
Tube feedings (either by nose or through the stomach wall)
Home cancer therapy
Palliative or hospice care
Care for people who have some form of dementia
Community Support Services
Adult day centres
Meals-on-wheels and/or wheels to meals programs
Respite care (so that caregivers can have some time off)
Transportation help
Help with shopping
Help with home maintenance
Daily telephone check-ins
Friendly visiting services
Home care programs across Canada and the United States provide different services. To find out what is available in your community, you can check with your family doctor, community health office, or other home health care providers. If a particular service is not available in your community, ask your political leaders why and how your community can arrange to get such service in the near future. If you have difficulty in finding out what services are available, you can contact:
Canadian Home Care Association
(613) 569-1585
National Association for Home Care
(202) 547-7424
Respite care may be available in your community to provide extra support so that family caregivers can take a short break. Check with your local home care, hospice or long-term care groups.
The following organizations have many services and information to offer. Check your telephone book for local offices or check with the national office or Web sites.
If you are getting information by phone, always have a list of questions written out and write any answers on the same sheet of paper including the name of the person you spoke to.
Hospice Palliative Care
To locate hospice and palliative care programs, check your telephone directory or these national organizations:
Canadian Hospice Palliative Care Association
1 (800) 668-2785
National Hospice Palliative Care Organization
(703) 887-1500
Health Care Organizations
If you live outside of an urban centre, you can call Area Code + 555-1212 to get the branch office in the city nearest you. If you have access to the Internet, use http://www.yahoo.com or http://www.canada411.ca to help you locate services nearest to you.
AIDS Committees
Check your local telephone directory or nearest urban centre.
Alzheimer Society of Canada (and related Dementias)
1 (800) 616-8816
Amyotrophic Lateral Sclerosis (ALS) Society of Canada
1 (800) 267-4257
Arthritis Society
1 (800) 321-1433
Bereavement support services (grief counselling)
Check your telephone directory.
Brain Tumour Foundation
1 (800) 265-5106
Canadian Association of Retired Persons
(416) 363-8748
Canadian Cancer Society (Cancer Information Services)
1 888 939-3333
Canadian Continence Foundation (incontinence)
1 (800) 265-9575
" http://www.continence-fdn.ca
Canadian Diabetes Association
1 (800) 226-8464
Canadian Hemophilia Society
1 (800) 668-2686
Canadian Lung Association
1 (888) 566-5864
Canadian Medic Alert Foundation
1 (800) 668-1507
Canadian Red Cross Society
(613) 740-1900
Childhood Cancer Foundation Candlelighters Canada
1 (800) 363-1062
Distress Lines
Check your local telephone book on the inside cover.
Epilepsy Canada
1 (877) 734-0873
Heart and Stroke Foundation of Canada
1 (888) 473-4636
Kidney Foundation of Canada
1 (800) 361-7494
Kids Help Line
1 (800) 668-6868
http://www.kidshelp.sympatico.ca
Lifeline (electronic alert systems)
1 (800) 543-3546
Lupus Canada
1 (800) 661-1468
Medical/Physical Aids
Check with your home care service, medical supply store and/or family doctor. Also some local disease-specific organizations or Red Cross branches loan out supplies.
Social Assistance
Check Blue government pages of your telephone book.
Important Information
The following is a list of people I can call or visit for help. (Your family doctor, home care case manager or visiting home nurse can help you with the information you do not know.) Use a photocopier to enlarge this form and use the back of the page to add more contact information. Keep a copy at every telephone in your home and carry one with you at all times.
Your own immediate family not living with you:
Family Doctor:
Specialists:
Home Care Contact Person (they arrange for nurses, physio and occupational therapists, social workers, respiratory therapists, dietitians, and home care supplies):
Visiting Home Nurses:
Homemaking Program:
Pharmacist:
Volunteer Support Programs:
Hospice/Palliative Care Program:
Respite Care Program:
Health Care Number and related insurance numbers:
Acknowledgements
I am grateful to the following people for their editorial advice: Cathryn Allen, Program Manager of the Palliative Care Program, Camp Hill Medical Center, Halifax, Nova Scotia; Gloria Repetto and Florence Bell, Head Nurse and Nursing Supervisor respectfully at Victoria General Hospital, Halifax; Members of the Canadian Home Care Association; Dr. Ina Cummings, Medical Director for Palliative Care at Camp Hill Medical Center; Shari Douglas, Home Care Case Manager in Owen Sound, Ontario; Diane Huson, illustrator, Whitby, Ontario; Connie Smith, Long-Term Care Co-Ordinator for Kincardine and District General Hospital, Ontario; Deb Thivierge, Human Services Consultant and partner in Paradigm Partners, Toronto, Ontario; Glenna Thornhill, Home Care Nurse, Camp Hill Medical Center; and Dorothy Woodward, retired home support worker, Parksville, British Columbia.
This revised edition was enhanced by the suggestions made by Nadia Hladin, Regional Program Manager, West GTA Stroke Network; Blair Henry and June Galbraith of Trinity Home Hospice in Toronto, Kit Martin, RN, of the Palliative Care Services of York Region, and Robert Ting, MD, FRCP(C) a Nephrologist practicing in Toronto. Each of these professionals provided freely of their time and resources to help make home care a more positive experience for us all.
I am grateful to Beverley Powell-Vinden of PowerPhrase Communications in Mississauga, Ontario for making this book more readable.
My sincerest thanks and love to Janet Klees who helped provide home care to my father and who edits all of my work. She is my inspiration along with our children Bram and Joanna.
Remember to talk to a professional health care provider (e.g., nurse, doctor, physiotherapist or pharmacist) before trying any of the tips and techniques in this book to make sure you are doing them correctly.
In memory of Moeder, Vader and Opa, with love and gratitude.
In thanks to Dr. Hung Der, a friend and unwavering supporter.
In honour of Rieky Haas; Philo van Enckevort; Annie and Leo van Ryswyk and their extended families who all model caring for loved ones with such joyful compassion.
Dedicated to Janet, Joanna and Bram who lovingly share in this continuing adventure.
Help Keep this Book Relevant
If you would like to offer your comments to help keep this book up-to-date and relevant to all users, please answer the following questions:
Name and telephone number: (optional)
I am a: q family member q friend q neighbor
q professional care provider q volunteer
1. What did you like about the content of this book? How did it specifically help you and your family/organization?
2. Are there areas where you would have liked more or less details?
3. Are there areas that were not covered that would help other families/organizations in the future?
Please mail, fax or email your comments to:
Legacies: Family & Community Resources
11 Miniot Circle, Scarborough, Ontario M1K 2K1 Canada
Telephone: 416.264.4665
Email: info@legacies.ca
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