Health Care Notebook

Health Care Notebook

An easy-to-use way to keep track of your health care needs during a hospital stay, tests, treatments and home care




NOTE: For this iBook, we have deleted all the lines on forms to save on space.

You may cut and paste the headings into any word processing package to

create your own forms or buy a copy of our book Health Care Notebook.


This book is best printed on loose-leaf  paper and put into a binder.



Harry van Bommel & Janet Klees

Resources Supporting Family

and Community Legacies Inc.  

Toronto, 2007

© Harry van Bommel and Janet Klees  2007



ALL RIGHTS RESERVED. No part of this publication may be reproduced, stored in a retrieval system, or transmitted, in any form or by any means, electronic, mechanical, photocopying, recording or otherwise, without the prior written permission of the author.


National Library of Canada Cataloguing in Publication

ISBN 978-1-55307-059-7



To contact the authors, write or call:


Resources Supporting Family and Community Legacies Inc.
11 Miniot Circle

Toronto, ON

CANADA  M1K 2K1
(416) 264-4665

harry@legacies.ca

www.legacies.ca




Important Information


The following is a list of people to call or visit for help. (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, physiotherapists and occupational therapist, social worker, respiratory therapist, dietitian, 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: _____________________________




Table of Contents






Important Information / 2


Acknowledgements  / 5


Introduction – How to Use This Notebook  / 6


What to Do in an Emergency  / 7


ALERTS!  / 8


Your Hospital Drugs  / 9


Your Personal Health Information  / 12


Your Schedule of Visitors  / 13


Your Daily Notes  / 14


References  / 75


Finding Out About Local Home and Health Care Programs  / 79


Your Own Notes  / 81


Blank Forms for Photocopying  /90



Acknowledgements


There are books available that provide you information about the kinds of questions you should ask in a hospital, the typical answers you might expect, how to advocate for a loved one and others. Some of listed in the Reference section.


Here we would like to pay tribute to several authors who have provided material that goes beyond the typical in how to advocate for someone in a hospital. Professor Wolf Wolfensberger’s 2005 update of his A guideline on protecting the health and lives of patients in hospitals, especially if the patient is a member of a societally devalued class is enormously powerful in providing specific how-to’s in supporting someone in the hospital. His work was used in creating the Workbook for protecting the health and lives of hospital patients by Jo Massarelli, Joe Osburn and Marc Tumeinski. Although this book has chosen a simpler format to record notes, questions and answers for patients during a hospital stay, we encourage readers who are particularly concerned about their loved ones to check out these books.


We have taken sections of Caring for loved ones at home by Harry van Bommel to provide helpful tips and a glossary. We hope you find these helpful.


We would like to acknowledge the following people for providing invaluable editorial advice during the writing of this book:


Deb Thivierge, who allowed us to use a draft of this book during her own recovery from surgery.


Diane and Bill Huson who used this material during Bill’s recovery.


Their feedback makes this notebook all the more practical and we are grateful.



Introduction – How to Use This Notebook


No matter how wonderful the health care you receive, it is important to keep track of your care. You are the only person who will be involved in all the tests, treatments, medications, decisions and follow-up appointments. It is important that you not try to remember everything that happens to you. It is better to record what happens as it happens. Either you or your loved ones/visitors can do the recording. This way, you will always have accurate information for the new doctor or nurse who asks you, “So why are you here today?”


Some tips:


Keep this notebook by your bedside at all times. Let your visitors read and write in it. They will feel useful at a time when they might not know what to do.


Use the notebook to schedule your visitors so they don’t all arrive one day with no one there the next day.


Leave the book open to your photos and stories so that any doctor or nurse or other care provider can have a look. This lets them get to know you a bit better – and that usually leads to better care, and it also lets them know that you are keeping records of your care. It lets them know you are an active participant in your own treatment and recovery.


The key is to have the information you need when you need it. When it is on paper, care providers trust it more. When you say you have an allergy to morphine and it is written down, they are more likely to believe it.


Note: To be practical, this is a short book. We cannot cover every kind of health care situation you, or a loved one, may experience. Adapt the information in this book to meet your needs. If you cannot find what you need in this book, ask your home care case manager, visiting home nurse, family doctor, pharmacist, social worker, librarian, or bookstore employee for more specific information.


Sincere Best Wishes


Harry van Bommel and Janet Klees

Toronto, Ontario



What to Do in an Emergency


Talk to your doctor and health care team about who should be called for what type of emergency. Keep a list of their names and telephone numbers by the telephone, in this Notebook and in your pocket. What may feel like an emergency may only need some telephone help from your doctor, nurse, social worker or home care case manager. For example, if you are having unexpected symptoms at home while recovering from surgery, it may be best to call your family physician first to see whether an office visit would be more helpful, and timely, than going to the Emergency Department.


If in doubt, however, in almost all emergency situations where you cannot deal with whatever is happening, call 911 or your local hospital, fire department or ambulance service.


If you are expecting to care for someone at home, and have enough time to plan for that situation (e.g., someone is having surgery in 6 months) take an emergency first aid course or upgrading program. There are also family health care programs offered through local organizations including St. John Ambulance, The Red Cross, community colleges and others. The more you know about what to do in an emergency situation, the more comfortable you will feel and the more control you will have during the situation.


As with all good planning, you should think about what you will do in different situations before they happen. Just as we should plan our fire escape route from our home, we should also know what to do if someone gets seriously ill at home. The more we think about these situations in advance, the more we will act naturally and with relative calm if the situation ever happens.


ALERTS!


If you have any allergies or conditions that will affect your care, list them here. For example, if you are allergic to any pain medications or foods, list them here. If you have a heart pace maker or had surgery that might impact on your treatment now, all of these should be listed. There should be NO SURPRISES for your health care providers.



ALLERGIES












PREVIOUS MEDICAL TREATMENTS





















Your Hospital Drugs


The drugs you take at home may not be what you take at the hospital. Keep a separate list of your home drugs to show in the hospital. This list is for what you are given in the hospital.


It is important to keep a record of the prescription medications you are taking and what you are no longer taking. For example:



Date Started (and Ended)    Drug    Dosage & Frequency        or What Symptoms/Condition    Doctor    Results/Side Effects


Apr 10; ongoing as needed    Tylenol 3 10 mg, 4 x per day as needed    headaches                                    Kildair    ain relieved within 1 hour



One the next page are several forms.



Your Personal Health Information


The book How to Manage Your Records: Financial, Legal and Medical by Harry van Bommel (see References) helps you record all of your personal health information. For example, your childhood illnesses, your adult illnesses, any conditions that might be hereditary, your physicians’ names and contact information, questions to ask your physician about tests, treatments and condition and much more. It is worth having such records with you to avoid having to answer the same questions over and over again whenever you need medical attention. For medical information more complicated than the forms can accommodate, I suggest you get copies of important medical documents from your doctor and/or hospital.


Your Schedule of Visitors


You probably will not need to record every visitor and when they are scheduled to be with you. However, in situations where you want to have visitors either during the day or all day and all night (in the first few days after surgery, for example), it can help to plan visitors so that they are spread out over the time you need them.


You do not need anything fancy. Use a separate piece of paper so that it can be easily found on your night stand, on a cork board by your bed, or somewhere else very visible. Make it simple:


NameTime Any notes they want to make




NOTE: For this iBook, we have deleted all the lines on forms to save on space.

You may cut and paste the headings into any word processing package to

create your own forms or buy a copy of our book Health Care Notebook.


Your Daily Notes



Everyday that you are in the hospital, there will be information you will need to record. You may need to record doctor and nurses names, medications, tests, procedures, treatments, and whatever else you feel can help. Use the following pages in whatever ways work best for you. Use them to record information but also to communicate with other visitors about what the person needs during the next ‘shift.’


DATE     NAME                 NOTES




NEW PAGE:


Taking notes does not show disrespect to health care providers. It shows you take your health care seriously and want to participate fully in your care.




DATE     NAME                 NOTES



NEW PAGE:


Help health care providers remember your name. Use their names whenever possible.

It shows respect and a willingness to connect as human beings.




DATE     NAME                 NOTES


NEW PAGE:

Smile when you can. Answers questions honestly.

NEVER say “I’m fine” when you are not.





DATE     NAME                 NOTES


NEW PAGE:


Learn the pain scale – values from 1-10 with 1 equaling no pain and

10 equaling the worst pain you have ever felt.

ALWAYS give each doctor and nurse that visits you a description of your pain.




DATE     NAME                 NOTES




NEW PAGE:

“Stiff upper lip” is great in a snowstorm.

It is not helpful when you are sick and care providers need useful answers to their questions. Pretending you are okay only prolongs the time it takes to heal.




DATE     NAME                 NOTES




NEW PAGE:

Giving fresh fruit, chocolates or a “thank you” card is always

appreciated by staff, volunteers and visitors.




DATE     NAME                 NOTES



NEW PAGE:


Use a CD/MP3/iPod/or other playback device (with earphones) to listen to favorite music or relaxation sounds (e.g., ocean ways, song birds) to help drown out the noises of the hospital. It may help you to sleep as well while all around you intercoms are going off, trays are falling, carts are banged against walls and people talking loudly, laughing, shouting or crying.



DATE     NAME                 NOTES



NEW PAGE:

Hospitals can be noisy and scary. Concentrate on breaking in through you nose and breathing out through your mouth. Breathe into your abdomen as slowly as you can. Concentrate just on slow breathing. When your mind wanders (as it does every second or so!) just place you concentration back on your breath. This is a natural, healing and relaxing technique to help you gain control over your anxieties.



DATE     NAME                 NOTES



NEW PAGE:


Eat as well as you can, when you can. Ask people to bring in foods and drinks that you enjoy and that will help you heal. Make sure the foods are allowable on whatever diet you are on. Most hospitals don’t mind if you bring in your own foods as long as they don’t go against your treatment.



DATE     NAME                 NOTES



NEW PAGE:


If you or a loved one is seriously ill – consider having visitors with you around the clock using the visitors’ schedule in this book. These visitors will provide you with support and care but also advocate on your behalf to minimize any accidental medication or treatment errors.



DATE     NAME                 NOTES



NEW PAGE:


Find moments when you can help someone else feel better through a kind word, a smile, a laugh, prayer or conversation. This hospital is filled with people who are scared. Help them and accept other people’s help in return so you feel less afraid.



DATE     NAME                 NOTES



NEW PAGE:


Laugh. Breathe deeply and slowly.

Repeat both of these as often as possible!



DATE     NAME                 NOTES



NEW PAGE:



Recognizing that staff may be overworked is not the same as accepting poor care. You are there to heal; not to fix the health care system. Expect and require excellent care. Note down both excellent care and poor care and who gave you which.



DATE     NAME                 NOTES



NEW PAGE:


If you can, walk around as much as possible.

Movement is often very healing and helps return

all body functions back to normal for you.



DATE     NAME                 NOTES



NEW PAGE:



Use this opportunity to review your life and note any changes you would like to make. Write these down to help you remember them after you return home to your busy life.



DATE     NAME                 NOTES




NEW PAGE:


Sadly, the “squeaky wheel” often does get better care than the quiet, compliant patient. Sadly. So speak up about what you need and when you need it. If you can’t do it for yourself, insist that your family and friends speak up on your behalf. This is not the time to put your health care concerns second – to heal properly, you must put your health first.



DATE     NAME                 NOTES



NEW PAGE:



Ask for people’s names and use them. Help them remember your name. People treat someone they know better than just another patient in room 314.



DATE     NAME                 NOTES




NEW PAGE:


Ask the nurse or physio/occupational therapist to teach your loved ones some skills to use at home where they will be caring for you. Hospitals are a great teaching centre for family caregivers!



DATE     NAME                 NOTES



NEW PAGE:



Young children and teenagers are often discouraged from visiting someone in the hospital because we don’t want to frighten them. How else will they learn to deal with the realities of illness? These are perfect opportunities to let young people know they have an invaluable role to play in providing care to those they love. Do not miss out on this opportunity on their behalf. Give them lots of changes to show they can be helpful too!



DATE     NAME                 NOTES



NEW PAGE:


Do not accept tests and treatments without understanding why you need them. Your physicians maybe busy but you must live with the consequences – not them. Make them take the time to answer your questions and have someone help you write out their answers.


DATE     NAME                 NOTES



NEW PAGE:


Taking notes does not show disrespect to health care providers. It shows you take your health care seriously and want to participate fully in your care.




DATE     NAME                 NOTES



NEW PAGE:


Help health care providers remember your name. Use their names whenever possible.

It shows respect and a willingness to connect as human beings.




DATE     NAME                 NOTES



NEW PAGE:


Smile when you can. Answers questions honestly.

NEVER say “I’m fine” when you are not.





DATE     NAME                 NOTES



NEW PAGE:


Learn the pain scale – values from 1-10 with 1 equaling no pain and

10 equaling the worst pain you have ever felt.

ALWAYS give each doctor and nurse that visits you a description of your pain.




DATE     NAME                 NOTES



NEW PAGE:


“Stiff upper lip” is great in a snowstorm.

It is not helpful when you are sick and care providers need useful answers to their questions. Pretending you are okay only prolongs the time it takes to heal.




DATE     NAME                 NOTES



NEW PAGE:


Giving fresh fruit, chocolates or a “thank you” card is always

appreciated by staff, volunteers and visitors.




DATE     NAME                 NOTES



NEW PAGE:


Use a CD/MP3/iPod/or other playback device (with earphones) to listen to favorite music or relaxation sounds (e.g., ocean ways, song birds) to help drown out the noises of the hospital. It may help you to sleep as well while all around you intercoms are going off, trays are falling, carts are banged against walls and people talking loudly, laughing, shouting or crying.



DATE     NAME                 NOTES



NEW PAGE:



Hospitals can be noisy and scary. Concentrate on breaking in through you nose and breathing out through your mouth. Breathe into your abdomen as slowly as you can. Concentrate just on slow breathing. When your mind wanders (as it does every second or so!) just place you concentration back on your breath. This is a natural, healing and relaxing technique to help you gain control over your anxieties.



DATE     NAME                 NOTES



NEW PAGE:


Eat as well as you can, when you can. Ask people to bring in foods and drinks that you enjoy and that will help you heal. Make sure the foods are allowable on whatever diet you are on. Most hospitals don’t mind if you bring in your own foods as long as they don’t go against your treatment.



DATE     NAME                 NOTES



NEW PAGE:


If you or a loved one is seriously ill – consider having visitors with you around the clock using the visitors’ schedule in this book. These visitors will provide you with support and care but also advocate on your behalf to minimize any accidental medication or treatment errors.



DATE     NAME                 NOTES



NEW PAGE:


Find moments when you can help someone else feel better through a kind word, a smile, a laugh, prayer or conversation. This hospital is filled with people who are scared. Help them and accept other people’s help in return so you feel less afraid.



DATE     NAME                 NOTES




NEW PAGE:


Laugh. Breathe deeply and slowly.

Repeat both of these as often as possible!



DATE     NAME                 NOTES



NEW PAGE:


Recognizing that staff may be overworked is not the same as accepting poor care. You are there to heal; not to fix the health care system. Expect and require excellent care. Note down both excellent care and poor care and who gave you which.



DATE     NAME                 NOTES



NEW PAGE:

If you can, walk around as much as possible.

Movement is often very healing and helps return

all body functions back to normal for you.



DATE     NAME                 NOTES



NEW PAGE:


Use this opportunity to review your life and note any changes you would like to make. Write these down to help you remember them after you return home to your busy life.



DATE     NAME                 NOTES



NEW PAGE:


Sadly, the “squeaky wheel” often does get better care than the quiet, compliant patient. Sadly. So speak up about what you need and when you need it. If you can’t do it for yourself, insist that your family and friends speak up on your behalf. This is not the time to put your health care concerns second – to heal properly, you must put your health first.



DATE     NAME                 NOTES



NEW PAGE:


Ask for people’s names and use them. Help them remember your name. People treat someone they know better than just another patient in room 314.



DATE     NAME                 NOTES



NEW PAGE:


Ask the nurse or physio/occupational therapist to teach your loved ones some skills to use at home where they will be caring for you. Hospitals are a great teaching centre for family caregivers!



DATE     NAME                 NOTES



NEW PAGE:



Young children and teenagers are often discouraged from visiting someone in the hospital because we don’t want to frighten them. How else will they learn to deal with the realities of illness? These are perfect opportunities to let young people know they have an invaluable role to play in providing care to those they love. Do not miss out on this opportunity on their behalf. Give them lots of changes to show they can be helpful too!



DATE     NAME                 NOTES



NEW PAGE:



Do not accept tests and treatments without understanding why you need them. Your physicians maybe busy but you must live with the consequences – not them. Make them take the time to answer your questions and have someone help you write out their answers.


DATE     NAME                 NOTES



NEW PAGE:



Taking notes does not show disrespect to health care providers. It shows you take your health care seriously and want to participate fully in your care.




DATE     NAME                 NOTES



NEW PAGE:


Help health care providers remember your name. Use their names whenever possible.

It shows respect and a willingness to connect as human beings.




DATE     NAME                 NOTES



NEW PAGE:



Smile when you can. Answers questions honestly.

NEVER say “I’m fine” when you are not.





DATE     NAME                 NOTES



NEW PAGE:


Learn the pain scale – values from 1-10 with 1 equaling no pain and

10 equaling the worst pain you have ever felt.

ALWAYS give each doctor and nurse that visits you a description of your pain.




DATE     NAME                 NOTES



NEW PAGE:



“Stiff upper lip” is great in a snowstorm.

It is not helpful when you are sick and care providers need useful answers to their questions. Pretending you are okay only prolongs the time it takes to heal.




DATE     NAME                 NOTES



NEW PAGE:



Giving fresh fruit, chocolates or a “thank you” card is always

appreciated by staff, volunteers and visitors.




DATE     NAME                 NOTES



NEW PAGE:


Use a CD/MP3/iPod/or other playback device (with earphones) to listen to favorite music or relaxation sounds (e.g., ocean ways, song birds) to help drown out the noises of the hospital. It may help you to sleep as well while all around you intercoms are going off, trays are falling, carts are banged against walls and people talking loudly, laughing, shouting or crying.



DATE     NAME                 NOTES



NEW PAGE:

Hospitals can be noisy and scary. Concentrate on breaking in through you nose and breathing out through your mouth. Breathe into your abdomen as slowly as you can. Concentrate just on slow breathing. When your mind wanders (as it does every second or so!) just place you concentration back on your breath. This is a natural, healing and relaxing technique to help you gain control over your anxieties.



DATE     NAME                 NOTES




NEW PAGE:


Eat as well as you can, when you can. Ask people to bring in foods and drinks that you enjoy and that will help you heal. Make sure the foods are allowable on whatever diet you are on. Most hospitals don’t mind if you bring in your own foods as long as they don’t go against your treatment.



DATE     NAME                 NOTES


NEW PAGE:


If you or a loved one is seriously ill – consider having visitors with you around the clock using the visitors’ schedule in this book. These visitors will provide you with support and care but also advocate on your behalf to minimize any accidental medication or treatment errors.



DATE     NAME                 NOTES



NEW PAGE:


Find moments when you can help someone else feel better through a kind word, a smile, a laugh, prayer or conversation. This hospital is filled with people who are scared. Help them and accept other people’s help in return so you feel less afraid.



DATE     NAME                 NOTES



NEW PAGE:


Laugh. Breathe deeply and slowly.

Repeat both of these as often as possible!



DATE     NAME                 NOTES



NEW PAGE:


Recognizing that staff may be overworked is not the same as accepting poor care. You are there to heal; not to fix the health care system. Expect and require excellent care. Note down both excellent care and poor care and who gave you which.



DATE     NAME                 NOTES



NEW PAGE:


If you can, walk around as much as possible.

Movement is often very healing and helps return

all body functions back to normal for you.



DATE     NAME                 NOTES



NEW PAGE:


Use this opportunity to review your life and note any changes you would like to make. Write these down to help you remember them after you return home to your busy life.



DATE     NAME                 NOTES



NEW PAGE:


Sadly, the “squeaky wheel” often does get better care than the quiet, compliant patient. Sadly. So speak up about what you need and when you need it. If you can’t do it for yourself, insist that your family and friends speak up on your behalf. This is not the time to put your health care concerns second – to heal properly, you must put your health first.



DATE     NAME                 NOTES



NEW PAGE:


Ask for people’s names and use them. Help them remember your name. People treat someone they know better than just another patient in room 314.



DATE     NAME                 NOTES



NEW PAGE:


Ask the nurse or physio/occupational therapist to teach your loved ones some skills to use at home where they will be caring for you. Hospitals are a great teaching centre for family caregivers!



DATE     NAME                 NOTES




NEW PAGE:


Young children and teenagers are often discouraged from visiting someone in the hospital because we don’t want to frighten them. How else will they learn to deal with the realities of illness? These are perfect opportunities to let young people know they have an invaluable role to play in providing care to those they love. Do not miss out on this opportunity on their behalf. Give them lots of changes to show they can be helpful too!



DATE     NAME                 NOTES



NEW PAGE:


Do not accept tests and treatments without understanding why you need them. Your physicians maybe busy but you must live with the consequences – not them. Make them take the time to answer your questions and have someone help you write out their answers.


DATE     NAME                 NOTES



NEW PAGE:



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.


Inlander, Charles. (1997). Take this book to the hospital with you. New York: St.

Martin’s Press. One of the original books on patient advocacy and issues upon going to the hospital.



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.


Massarelli, Jo;  Osburn, Joe; and Tumeinski. Marc. (2004). Workbook for protecting the

health and lives of hospital patients. Worcester, MA: SRV Implementation Project.


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. (2005). Caring for loved ones at home. Toronto: Resources

Supporting Family and Community Legacies Inc. A basic home nursing guide for families complete with illustrations on bathing, helping a person get out of bed, mobility skills and much more. Includes chapter on setting up Support Circles for people requiring long-term or intensive care at home.


van Bommel, Harry. (2002). Family hospice care: Pre-planning and care guide. Toronto:

Resources Supporting Family and Community Legacies Inc. Written to help family and friends take care of people at home who are dying.


van Bommel, Harry. (2006). How to Manage Your Records: Financial, Legal and Medical.

Toronto: Resources Supporting Family and Community Legacies Inc. Forms for keeping track of all of your financial, legal and medical records.



Wolfensberger, Wolf. (2005) A guideline on protecting the health and lives of patients in

hospitals, especially if the patient is a member of a societally devalued class. (2nd rev. edition) Syracuse, New York: Training Institute for Human Service Planning, Leadership and Change Agentry (Syracuse University).




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.

www.caregiver.on.ca

Developed for people who are caring for elderly family members and friends.


Dr. Koop’s Community

www.drkoop.com

An interactive health site with daily updates and news.


Health Canada’s Information Site

www.hc-sc.gc.ca

An extensive site with many links to other reputable sites.


Canadian Health Network

www.canadian-health-network.ca

A general health information site with links to many other health related sites.


Mayo Clinic.Com

www.mayoclinic.com

An outstanding site for general health information


UpToDate

www.uptodate.com

A clinical reference for physicians who subscribe but also includes patient information that is updated regularly.


NOTE your own favourite websites to pass along to other readers of this Notebook




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. The types of services available in your community may be different from this list. Check with the hospital discharge planner or your local home care program.


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 centers

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

www.cdnhomecare.on.ca


National Association for Home Care (U.S.)

(202) 547-7424

www.nahc.org


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.


For disease specific information, check the Internet or your local telephone book.

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.


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 a search engine (e.g., www.google.com) to help you locate services nearest to you.




To contact the authors, write or call:



Resources Supporting Family and Community Legacies Inc.
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Toronto, ON

CANADA  M1K 2K1
(416) 264-4665


harry@legacies.ca

janet@legacies.ca



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