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Family members or friends often assume the role of caregiver with little or no preparation - they simply respond to a need. What they find very quickly is that while there may be some services available, in varying degrees, it is a difficult process to find what is 'out there'.
Navigation is the term that seems to best describe the process of finding one's way through a complex maze of jurisdictions, departments, services and programs. There are some tips that can demystify the process of navigation - offering some guidelines for seeking information and services - without adding unnecessary stress.
As the infrastructure of support services differs in each province, this section offers generic guidelines for seeking information in financial, legal and health/social arenas. When families are faced with the many demands of caregiving, the initial reaction can be overwhelming. Few people have had the experience of 'case management' which now becomes part of the caregiver role. They ask: How do I get some help Where do I go for information? Furthermore, most caregivers are trying to juggle a multitude of responsibilities and, while they acknowledge that there may be help 'out there', they say: I don't even know the questions to ask!
Easy to access information points. . . and some questions to ask. . .
Family Doctors are frequently the first line of contact for those needing care. S/he can be an advocate and work with the person and with you to plan the best options for care. S/he can also suggest sources of information and services. If your own family doctor is someone other than the doctor of the person you are caring for, it is also important to let her/him know that you are a caregiver. S/he can help you to monitor your own health if you are experiencing stress.
Some questions to ask:
In terms of person's health, what can we expect over the next time period ?
What symptoms are of particular concern?
When should I call you or when should we go to the hospital?
What information can you give me about this condition?
How can I encourage person to help themselves as much as possible?
If the person you are caring for is being referred to other doctors or other centres, you can ask "When you have all the final reports, can we meet again to discuss the situation?
What resources are available in this community?
Provincial Home Care Programs are an immediate source of information. There is usually a toll free number to call and it would be listed in the telephone directory in the provincial government section. Most provinces have a 'single point of entry' for continuing care services which means you make one call and they can direct you in various ways. When you call you will be asked a short series of questions to determine the best route for addressing your needs. If you are not eligible for the services offered by the home care program, ask the person for further direction.
Some questions to ask:
What information do I need to have available when the 'care coordinator' or assessor comes to see us?
Can you suggest where I might go to get information on specific condition ?
What services am I able to receive?
Can you suggest other places I could call to receive some services?
Where can I learn how to do a specific procedure ?
Victorian Order of Nurses (VON) offer community based services in most of the provinces. Depending on the scope of their program in a particular area, they offer visiting nurse services, homemaking services, adult day programs, information services, and community based volunteer programs. They often work closely with the provincial home care programs and so are very aware of the range of services that may be available to you.
Some questions to ask:
What services do you offer in my area?
Do you have 'sliding scale' fee structures? (Based on income)
Community Pharmacies usually have a section of information about various health conditions and community programs. The pharmacists play a significant role in education about medications and they are willing to answer your questions. Some larger pharmacies may also have home health centres with a consultant present to respond to your questions.
Some questions to ask:
When is the best time to take this medication?
If the prescription says 'three times a day', be sure to clarify whether that means three times within the time you are normally up and about, or does it mean over a 24 hour day?
What foods or other medications may affect the action of this drug?
What symptoms would indicate that the person is having a bad reaction to this drug?
Are these drugs covered under my health plan? The provincial plan? Are there any alternatives?
Where can I find out about different pieces of equipment and supplies that can help in this situation?
Do you have equipment available for loan (or rental)?
Health Charities have grown in their capacity to offer education and advocacy. They recognize the significant role of caregivers and are very willing to share resources and guide your information seeking journey. Health charities focus on a specific disease process, developing a great deal of expertise in their particular area. Many of the health charities have a national office with provincial chapters. Some examples of health charities you could contact are the Heart and Stroke Foundation, Alzheimer Society of the Diabetes Society.
Some questions to ask:
Do you offer any education sessions for family caregivers?
Do you have a respite program?
What information can you give me to help in my particular situation?
Do you have information to help families develop a shared care plan?
Public Libraries often have community information areas and also offer book and video resources.
Some questions to ask:
Can you order some materials in on specific issue ?
Can you help me identify some community resources?
Local Telephone Directories contain a great deal of general information about community services. You can use some of the time you may be waiting in professionals' offices to peruse the telephone book.
Summary of Easy to Access Information Points
Family Doctors
Provincial Home Care Programs
Victorian Order of Nurses
Community Pharmacies
Health Charities (i.e. Heart and Stroke Foundation or Alzheimer Society)
Public Libraries
Local telephone Directories |
Other possibilities. . .
Public Legal Education Centres offer brochures and pamphlets on important legal issues such as wills, power of attorney, and estate planning.
Some questions to ask:
Do you have any information. . .
- Power of Attorney
- Enduring Power of Attorney
- Guardianship
- Wills
- Estate Planning
- Placing a relative in a long term care facility
What do I need to know for my particular situation?
Can you recommend some lawyers (or others) who have special interests in these areas?
How are medical decisions made if the person is not able to make them her/himself?
What steps do I need to take to ensure my care receiver's affairs continue to be looked after?
Your Personal Financial Planner can suggest sources of information about estate planning.
Some questions to ask:
What do I need to know to manage this situation?
How will the day-to-day and other expenses be managed?
What discussions do I need to have with the bank about my care receiver's accounts?
Work-related Health Plans may offer services for you or your family member.
Some questions to ask:
Am I eligible for family leave?
What programs or services can I access?
Are there residential requirements for being able to access services (in some cases, the services are only available if the person is living with you)?
The Internet has become a source of information for those who have access to (and are comfortable with using) a computer. This section has several recommended sites listed for easy access.
Some questions to ask:
Is the site a reputable one?
Is it currently updated?
Does it always caution you to speak to a professional for specific advice?
Canadian Caregiver Coalition is a national organization devoted to issues pertinent to family or friend caregivers in Canada. If you contact this office, they may be able to help you identify particular resources in your province or region. Their website is www.ccc-ccan.ca.
Some questions to ask:
What resources are available in my province?
How can I receive information form you?
Provincial Caregiver Associations are active in some of the provinces. They may offer education workshops or they may be advocates for caregivers.
Some questions to ask:
What services do you provide?
Do you have a membership structure? If so, what does membership offer to me?
Faith Communities can be a source of support and may offer visiting programs or may be able to assist in identifying sources of community services.
Summary of Other Possibilities
Public Legal Education Centres
Your Personal Financial Planner
Work-Related Health Plans
The Internet
Canadian Caregiver Coalition
Provincial Caregiver Associations
Faith CommunitiesPossibilities if specific conditions exist. . . |
If . . .
. . . you or the person you are caring for is a Veteran, you can contact the Veterans Affairs Canada office in your region to determine if you qualify for the programs they offer.
. . . you or the person you are caring for is a senior, you can contact a seniors' organization in your area to ask for advice on how to access services or programs.
. . . you or the person you are caring for has a disability, you can contact local disability organizations or provincial disability councils. They often produce a directory of services.
. . . the person you are caring for needs special equipment, you can contact your local hospital for some suggestions of where to access this or they may even have a lending program.
. . . you know other family members and friends who have had similar experiences, you can ask them to share what they learned.
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