Caring for a Child or Youth
In Ontario there are 3.3 million caregivers; ordinary people who provide physical and emotional support to a family member, partner, friend or neighbour.
While it may not seem fitting to call a parent a caregiver, there are situations where a child or youth requires more support than would be expected. This is typically when a child or youth is managing a long-term physical or mental health challenge. As a parent, you may be coordinating a health care team, working with your child’s school or navigating other social services. Regardless, the Ontario Caregiver Organization is here for you.
Learn more about caregiving, tips on caring for yourself and a child or youth with physical and/or mental health needs:
New to Caregiving
You might not have thought of yourself as a caregiver before, but you play an invaluable role in the lives of those you care for and Ontario’s health care system.
As a caregiver, you provide 3/4 of patient care. Some of the tasks you manage may include providing emotional support and transportation. You may also be involved in activities inside and outside the home, including providing personal care, physical support, basic medical procedures, scheduling appointments, translating information, and managing financial and legal responsibilities.
Your role may have evolved over time or began suddenly as a result of an accident or medical issue. Regardless, the Ontario Caregiver Organization is here to help.
Identifying Your Needs
Before you begin to search for support, take a few minutes to reflect on your role and the many tasks you manage. Next, pause and think about how you’re managing the stress of performing these tasks.
Step One: Checklist
Take an inventory of the role you play as a caregiver. Identify the tasks you manage and the resources you are currently using. This might include support you receive from other family members or community groups. This exercise will give you a better picture of all the tasks you are managing, the supports you are using and where you need extra help.
Step 2: Check in on You
This quiz will help you to reflect on how you’re feeling and to think about the level of stress in your life.
Consider the tasks you manage, as well as your quiz score. Do you need a break, assistance with transportation, information related to finances, support in the home, help with house maintenance, someone to talk to, or are you a young caregiver who isn’t sure where to turn?
The checklist and quiz have been re-printed with permission from Caregivers Nova Scotia.
Stages of Caregiving
Each person’s journey through the health care system is unique, and so is your journey as their caregiver. Whether your role has evolved over time or you were launched into caregiving by an accident or medical issue, there will be a period of adjustment for both the person receiving care and for you as their caregiver.
Both of you will experience significant changes as you rearrange, stabilize, and build a new normal. Your caregiving responsibilities may impact your personal and social life, as well as work or school schedules. New or ongoing health challenges will require continued resilience and adjustment.
In addition, you will need to navigate the Ontario health care system as it pertains to your care recipient’s specific needs.
Care Trajectory diagram created by The Change Foundation (Shedding New Light: One Caregiver’s Journey, Sara Shearkhani).
To prepare for the journey ahead or to check in on which stage of caregiving you are at, take a look at the 5 LifeStages of Caregiving:
During this LifeStage you are spending an average of 1-10 hours per week helping “a bit more than usual” with everyday activities like shopping, meals, transportation, appointments, and banking. You may not see yourself as a caregiver but rather as a family member, friend, or partner/spouse doing what you naturally do.
During the Involved LifeStage you are spending an average of 11-20 hours per week involved with a broad range of caregiving activities. You may not yet see yourself as a caregiver. However, you are likely experiencing apprehension about your caregiving role and the skills required. There is also the challenge of balancing caregiving with your other day-to-day responsibilities.
According to the Canadian Institute for Health Information, caregivers are 2.5 times more likely to be in distress if caregiving over 20 hours per week.
You are in the Intensive LifeStage when you spend between 21-40 hours per week providing care. There is likely no doubt in your mind that you are a caregiver and it is during this LifeStage that your health and wellbeing are most at risk. It is in the Intensive LifeStage where caregivers often find themselves in the new and unfamiliar aspects of caregiving. You may need to learn new and complex skills as well as make life-changing decisions and sacrifices.
All Encompassing LifeStage
In the All Encompassing LifeStage, the health and wellbeing of the person you’re caring for has become a full-time job. You have likely re-defined your priorities, given up many aspects of your normal life, and made significant sacrifices. You have probably mastered many complex skills while overseeing virtually all aspects of the person’s day-to-day life from medical tasks to coordinating health care and making medical and financial decisions. Your overall life satisfaction, including your physical, mental, and emotional health and wellbeing are at risk. In addition, your relationships may be strained.
Whether gradual or sudden, planned or unplanned, the Closing LifeStage is a time of transition out of your role as caregiver. This is due to a change in the caregiving situation. The person no longer needs caregiving, another person or facility is providing the care, or the person has died. This can be a valuable time to reflect on your caregiving experience and how it has shaped you. It is also a time to let go of any negative judgements or criticisms you may have about yourself, your caregiving, and/or the person you were caring for. Throughout this Closing LifeStage, caregivers typically experience a range of feelings from sadness, feeling “lost” or guilty, to satisfaction, excitement, and pride.
The 5 LifeStages of Caregiving was created by elizz.
Caring for Yourself
Being a caregiver can impact your health and wellness, as well as your relationships with family and friends. It’s important to take a break and avoid burnout. Taking care of yourself is as important as caring for someone else.
The most important coping strategies are:
Eat right – Balanced nutrition is essential to keeping up your own health and energy.
Exercise – Moving your body helps alleviate depression and increases your endorphins (coping hormones).
Sleep – It may be hard to get 7-8 hours a night but rest is key to resiliency and proper functioning.
Connect – Finding someone to talk to, be it a family member, friend or peer support group, is crucial to handling your own emotions and the stress of caregiving.
Take a look at OCO’s self-care videos and read our blog.
Emotions and What to Expect
While most caregivers have a positive outlook on their experience and a sense of fulfillment, two-thirds admit they had no choice but to assume the work of caregiving.
Regardless of why or how you became a caregiver, there are many emotions that arise from taking on the responsibilities involved with caregiving. Some of these will come up right away, while others may take time to surface or be difficult to express.
You may feel: tired, frustrated, anxious, overwhelmed, depressed, lonely, resentful, irritable, afraid, angry, and a variety of other emotions. These are all normal and may be part of your caregiving experience.
In order to manage your own emotions, it is important to take care of your own needs. Ask for help and support from:
- Family members or friends
- Spiritual or religious groups
- Community or peer support groups
- Specific disability or illness organizations
- Therapist, counsellor, social worker
- Respite services
A temporary rest is called respite or respite care. The care provided by a community agency can also be called respite services. This support can be provided in or outside your home and ensures the person you support is being cared for while you care for yourself.
Find respite in your community by calling the Ontario Caregiver Helpline.
You can also visit: www.respiteservices.com
While many caregivers find their role rewarding, previous research from Health Quality Ontario has shown that one in four caregivers are experiencing distress, anger or depression and according to the Canadian Institute of Health Information, nearly half (45%) of caregivers of those with dementia are experiencing distress.
An opinion poll from OCO indicates that 46% of caregivers who support someone with a mental health challenge are not handling the situation well. 57% say they are not coping well emotionally and 47% say they are not coping well physically. A strong majority agree they often feel anxious or worried (87%), overwhelmed (85%), frustrated, helpless and trapped (82%) and are getting disturbed sleep (80%).
Read the Caregiver Mental Health Wishlist.
Here are a variety of other resources you may find helpful in taking care of yourself.
Self-care Videos – CaregiverExchange
The Caregivers’ Living Room – Blog by Ontario caregiver Donna Thomson
- Navigating the Healthcare System
Managing care is an ongoing process that will likely evolve over time for you and your care recipient. It is important that you build and grow your care team, including everyone who will provide care and who you will coordinate help with. Here is an overview of what you need to know and several resources to help, including a Care Binder.
Before you begin managing care, take time to identify your needs and review information on the health care system.
Building Your Care Team
Your care recipient has a team of supporters. Their healthcare providers, community services, family, friends and neighbours can all contribute to providing care. As the caregiver, you are the leader of this team. It is important to think of yourself this way as you coordinate, manage and ask for the support you need in fulfilling their care needs.
Who is on your care team? Consider drawing it out as a Care Map like the one below.
Care Map – Networked Care Model Diagram (Based on Tyze Personal Networks diagram)
There are a variety of healthcare services and providers that you may need as part of your care team. Review the Types of Care Providers and Helpful Definitions.
To find community services in your area, contact the Ontario Caregiver Helpline.
One of the biggest challenges in caregiving can be coordinating all of your care recipients needs and appointments, and who will be doing what. Whether a friend has offered to drive them to an appointment, or a neighbour has volunteered to cook a meal once a week, organizing all of the members of your care team can be a lot of work.
Here are a few free tools that can help you connect, organize and share calendars, notes and important information. Or try a shared digital calendar, group emails or group chat app – whatever works best for you and your team. Adding healthcare providers to your Personal Care Network can also be helpful.
Tyze – an online tool that connects people around someone receiving care. You can use it to privately communicate with family, friends and helpers about you or the person you care about; schedule appointments and events on a shared calendar; share files, photos, updates and more from anywhere, anytime. Tyze is HIPAA compliant which mean your data is secure and stored in Canada, so it is safe to add healthcare providers and medical records.
Lotsa Helping Hands (US) – is an online tool that brings together caregivers and volunteers through online communities that organize daily life during times of medical crisis or caregiver exhaustion. With the Help Calendar, you can post requests for support and members of your community can quickly find ways to help. You can also share notes, announcements and photos. Lotsa is a US-based company so you cannot add medical records.
The My Healthcare Journey Binder was created to help you keep all the caregiving information you need in one place. The binder can also help improve communication among care team members, including healthcare providers. Use it with your care recipient to manage healthcare information, appointments and to document questions.
The binder is organized into sections and can be arranged in whatever way is most useful for you. Check out the Care Templates for additional ways you can coordinate help.
- Section 1: Personal Information
- Section 2: Medications, Therapies and Allergies
- Section 3: Medical History
- Section 4: Consent and Legal Matters
- Section 5: Healthcare Team Notes
- Section 6: Care Templates
Get a binder, print the materials and let the members of your team know where it is and how they can use it as well.
The My Healthcare Journey Binder was created by The Change Foundation and the Connecting the Dots for Caregivers project team in Huron Perth.
Transition or Discharge
During your caregiving journey, there may be times when your care recipient is transitioning from one type of care to the next, or from one care setting to another. They may be discharged from a hospital or rehab centre or moving from their home to a long-term care facility.
In order to make this transition as easy as possible for your care recipient as well as yourself, it’s important to be prepared with a good plan. This can greatly impact how a patient heals, improves or adapts. Your plan should include the process and everything your care recipient needs for a smooth move from one type of care to another.
When helping someone transition from a hospital or rehab to home or other care facility, the first step is to discuss the process and what to expect with your care recipient and their healthcare team. You’ll need to determine if you as the caregiver need any training, what devices or medications are required, if anything in their home or the next facility needs to be modified, what additional support is needed, if there are any referrals necessary, and arrange for any follow-up appointments.
On the day of discharge, you should be given a discharge summary or package. This Discharge Checklist was created by The Change Foundation, Cornwall Community Hospital and Cornwall & District Family Support Group. It can be used as an example to help collect and record information to add to your Care Binder.
Over a third of caregivers must use their personal finances and savings to pay for the needs of the person they care for. They often have to cut back on their or their family’s spending to do so. Some will need a loan or sell off other assets to afford care. Those caring for children and older adults at the same time are facing the greatest financial hardships.
There are several financial supports available for caregivers from government agencies and community organizations. You may also be eligible for caregiver benefits and leave.
Federal Government of Canada Benefits Finder also searches for provincial benefits.
Alzheimer Society may offer a Caregiver Grant in your area.
Labatt Better Together program has grants for elderly support, youth development, health services and assistive devices for those at or below the median income.
March of Dimes offers a variety of funded programs and services for people with physical disabilities.
Legal Support, Privacy & Consent
At a certain point in your caregiving journey, you may become aware of legal issues. Whether it’s getting the consent of your care recipient to receive copies of their medical records, to becoming their substitute decision-maker or Power of Attorney, it’s important to know your rights as a caregiver so you can be empowered provide the best care.
Privacy & Consent
Your access to the patient’s personal health information requires the patient’s consent. With the patient’s consent, you have access to their personal health information and actual health records, or it may also give you the ability to participate in discussions with the provider about the patient’s care, giving and receiving information.
It is reasonable for you to ask the patient you are caring for to consent to their healthcare provider sharing personal health information with you. Print this Consent to Disclose Personal Health Information form for the patient to sign or ask the provider to document the patient’s consent in their health record and make sure that the provider’s staff is aware of the documented consent.
It’s okay for you to remind providers that they are permitted to share certain information with you based on the consent the patient has given. If a provider refuses to give the patient access their own health record or refuses to disclose it to you with the patient’s consent, the provider may need to be reminded that personal health information belongs to the patient, and that health privacy rules give rights of access and release with consent.
You may need to make repeated efforts to get copies of health records from a variety of providers who are providing care to the person you’re trying to support. You may be refused access to copies of test results or other health records. Providers may be reluctant to hear your important insights and updates about the patient’s health.
There is no consistent way across all parts of the health care system for the patient you are trying to support (or their substitute decision-maker) to provide a blanket consent for access to their health information. This consent typically needs to be repeated with each provider, and sometimes needs to be re-introduced at subsequent appointments.
When they can’t provide consent
If your care recipient is deemed incapable of making a decision, their healthcare provider must turn to the patient’s substitute decision-maker to make decisions on their behalf. This can include consenting to (or declining) proposed treatment and receiving the patient’s personal health information. If the caregiver is not the substitute decision-maker, the substitute decision-maker may consent to the healthcare provider sharing information with the caregiver.
If the caregiver is also the patient’s substitute decision-maker, they have all the rights of the patient in terms of accessing the health information and records of the patient, and giving personal health information to the healthcare provider. The substitute decision-maker is also entitled to all the relevant personal health information needed to make a treatment decision and may have recourse against a healthcare provider who refuses to provide it.
To be eligible to act as a substitute decision-maker, the person must be:
- willing and available
- at least 16 years of age
- not prohibited by court order or separation agreement
- capable to make the decision required
Everyone in Ontario has a default substitute decision-maker, whether or not they have signed a Power of Attorney for Personal Care. In most situations the substitute decisionmaker is a family member but there are other possibilities.
Hierarchy of eligible decision-makers:
- Court appointed guardian
- Attorney under a power of attorney for personal care
- Representative appointed by the Consent and Capacity Board
- Spouse or partner
- Child or parent; parent or other person with custody; Children’s Aid Society in place of parent
- Parent with right of access
- Brother or sister
- Any other relative
- Public Guardian and Trustee
In some cases, a longstanding caregiver who has been supporting a capable patient may find that they are not the substitute decision-maker based on the hierarchy when a patient’s health declines and they become incapable of giving consent. In this case, the caregiver should check in with the substitute decision-maker and request the substitute decisionmaker’s consent for healthcare providers to share the patient’s personal health information with the caregiver.
If a substitute decision-maker is appointed as a result of being named Power of Attorney for Personal Care, or as a guardian of the person, they have a general duty under the Substitute Decisions Act to foster regular personal contact between incapable patients and their supportive family members and friends, and must consult with them from time to time. Healthcare providers should ask whether the patient has a Power of Attorney for Personal Care, and for a signed copy of it.
In very few cases, patients will have a representative appointed by the Consent and Capacity Board. Ontario’s Public Guardian and Trustee (PGT) is the substitute decision-maker of last resort, when a patient has nobody else in the hierarchy to make decisions. The PGT also steps in if two or more equally ranked substitute decision-makers do not agree (e.g., two adult children disagree on proposed treatment).
Power of Attorney
A Power of Attorney is a legal document in which you give someone you trust (called your “attorney”) the right to make decisions for you if something happens and you are no longer able to look after matters on your own. As a caregiver, you may be designated the Power of Attorney for your care recipient. You can discuss the following with your care recipient. Ask if they would like to appoint someone and whether that would be you.
There are two types of Power of Attorney your care recipient can appoint:
- Power of Attorney for Personal Care – can make decisions about their health care, housing and other aspects of their personal life (such as meals and clothing) if they become mentally incapable of making these decisions.
- Power of Attorney for Property – can make decisions about their financial affairs (including paying their bills, collecting money owed to them, maintaining or selling their house, or managing their investments).
They don’t have to create a power of attorney. But if something happens to them and they don’t have one, other arrangements will have to be made. A family member may have the right to make certain personal care decisions, and can apply to become the guardian of their property. Alternatively, someone else — like a close friend — could apply to the court to be authorized to act for them.
If no suitable person is available, the government may have to step in, through the Office of the Public Guardian and Trustee.
To sign a power of attorney the care recipient must be considered mentally capable.
To be considered mentally capable of giving a power of attorney for personal care, it must be clear that they understand the need to choose someone with genuine concern for their welfare, and that there may be a need for that person to make personal care decisions for them.
To be considered mentally capable of giving a power of attorney for property, it must be clear that:
- they know about their assets (what they own, what they’re worth)
- they are aware of their obligations to their dependants, and
- they understand the authority and power they are giving to the person holding Power of Attorney.
A Capacity Assessment is the formal assessment of a person’s mental capacity to make decisions about property and personal care. Many situations require capacity assessments to be conducted by specially qualified assessors who must follow specific guidelines. Find out more about mental incapacity and getting an assessment.
Choosing their attorneys
Their good judgment is key to choosing a trustworthy person for this important responsibility.
The person they choose as their power of attorney for personal care must be at least 16 years old. For a power of attorney for property, the person must be at least 18 years old.
Anyone given power of attorney must be considered mentally capable when they are appointed.
Choosing their attorney for personal care
The person they decide to appoint as their attorney for personal care should be someone they trust to make decisions about their housing, food, health, safety, hygiene and clothing. This could be a family member or a close friend. Talk to the person and make sure that they are willing to take on this responsibility if needed.
Certain people are not allowed to be their attorney. Do not name any of the following people if they are paid (by them or someone else) to provide services to them, unless that person is also a family member:
- their landlord
- any person who provides care for them in the place where they live
- their social worker, counsellor, teacher
- their doctor, nurse, therapist, or other health care provider
- their homemaker or attendant
Important legal note: unless their power of attorney says otherwise:
- An attorney for personal care is only allowed to make medical or long-term care decisions if a medical professional or evaluator finds the care recipient mentally incapable of making the specific decision.
- For all other types of personal care decisions, the attorney can step in if they believe the care recipient is incapable — no assessment is required.
Choosing their attorney for property
Important: Unless otherwise specified, signing a power of attorney for property means the person named can start to make decisions immediately. They may want to include a statement in their Power of Attorney that says the attorney can only make decisions if they become mentally incapable.
If they choose to appoint this kind of attorney, make sure the person they choose understands their wishes and agrees to this important responsibility, which includes keeping detailed records of all transactions involving their money and assets.
One option is to use a trust company to act as their attorney. The trust company charges a fee but will be professional and impartial.
Creating their power of attorney
They can create a power of attorney themselves using the free kit provided by the Ontario government.
They can download the Power of Attorney Kit (forms and guide), or get a print copy mailed to them by calling the Office of the Public Guardian and Trustee: 1-800-366-0335.
Another option is to have a lawyer write their power of attorney. Consider seeing a lawyer if their personal or business affairs are complicated.
Note that each power of attorney must be signed by them and two eligible witnesses. Some people are not allowed to be witnesses, including their spouse and their children.
Always store legal documents in a safe place. Make sure that their attorney, their bank and anyone else who needs to know about these documents has a copy or knows where to get one. The government does not keep a registry of powers of attorney.
Information from the Ontario Ministry of the Attorney General.
An advance directive (also known as a Living Will) is a document that tells others what the care recipient wants to happen if they need medical care and are unable to consent or refuse treatment. For example, some people write an advance directive that says they do not want to be kept alive on life support if they have no hope of recovery.
An advance directive helps their substitute decision-maker make difficult choices because they know they are following their wishes in that situation. The directive doesn’t need to be written in any specific way and they don’t need to name anyone to act on their behalf. However, they may want to include an advance directive as part of their power of attorney for personal care.
Under Ontario law, if they express wishes about their future care while they are mentally capable, these instructions will be binding on their attorney or other substitute decision-maker, unless their wishes are impossible to follow at the time the attorney is asked to make the medical or care decision.
Information from the Ontario Ministry of the Attorney General.
In addition to choosing a substitute decision-maker or Power of Attorney, and advance directives, your care recipient may need to complete their Will.
They can create a Will for free online with LawDepot. Another option is to have a lawyer write their Will. Consider seeing a lawyer if their personal or business affairs are complicated.
The Ontario Ombudsman oversees more than 1,000 public sector bodies in Ontario and is an office of last resort. They help with unresolved complaints or investigate systemic issues regarding such organizations as:
- Ministry of Health and Long-Term Care
- Ontario Health Insurance Plan (OHIP)
- Local Health Integration Networks
- Exceptional Access Program
- Trillium Drug Program
- Assistive Devices Program
- Ontario Health Professions Appeal and Review Board
- Patient Ombudsman
They cannot take complaints about:
- Hospitals and long-term care homes – these are the responsibility of the Ministry’s Patient Ombudsman.
- Self-regulating professions such as doctors, nurses, dentists, chiropractors and other health professions.
The Ministry’s Patient Ombudsman facilitates resolutions and investigates patient and caregiver complaints – without taking sides – about patient care and health care experiences in public hospitals, long-term care homes and home and community care services coordinated by the OHTs/LHINs (including services formerly coordinated by the CCACs).
For full details, you can review the Legislation Supporting Family Caregivers in Canadian Jurisdictions and Selected International Jurisdictions.
Legal information research provided by The Change Foundation.