Caregiver Resources

Working collectively with caregivers, healthcare providers and other organizations, OCO draws on the variety of work that is currently being done to better support caregivers and improve the caregiving experience. We find ways to make existing services more broadly available so all caregivers, regardless of age, disease, diagnosis or location can access support. Where there are gaps, we work with caregivers and like-minded partners to find new and creative ways to fill them.

  • New to Caregiving

    Caregivers are ordinary people who provide physical and emotional support to a family member, partner, friend or neighbour. You might not have thought of yourself this way before, but caregivers play an invaluable role in the lives of those they care for and Ontario’s health care system, providing almost ¾ of all patient care. You may provide support to someone because of the person’s age, diagnosis, injury, or disability. Your role may have evolved over time or began suddenly as a result of an accident or medical issue.

    As a caregiver, you may take on many different tasks. Providing emotional support and transportation are the most common. 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.

    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.

    Download the Caregiving Checklist

    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.

    Take the Caregiver Quiz

    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:

    Helping LifeStage

    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.

    Involved LifeStage

    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.

    Intensive LifeStage

    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.

    Closing LifeStage

    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.

  • Taking Care of 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

    Finding Respite

    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

    Mental Health

    Caring for the Mental Health of Caregivers Wishlist

    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.
    A new 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%).
    “We hope this new information will encourage caregivers to reach out for supports early in their caregiving journey, as well as create a dialogue about the mental health of caregivers among caregivers, healthcare professionals, service providers, policy makers and the general public,” says CEO Amy Coupal. “The Ontario Caregiver Organization will also use what we heard to guide our work.”

    Read the Caregiver Mental Health Wishlist.

    Take a look at OCO’s mental health videos and read our blog.

    Other resources

    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

    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.

    Coordinating Care

    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.

    Care Binders

    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.

  • Young Caregivers

    Young caregivers or carers are children, youth and young adults (under age 24) who provide care for a sibling, parent or grandparent. They are often a hidden and at-risk-group of caregivers, helping a family member with a chronic illness, disability (physical or intellectual), mental health, addiction, or socioeconomic factor (single parent family, language barrier, etc.). In order to thrive, they need to be recognized and supported in their work by family, peers, school and professional healthcare providers.

    There are over 500,000 young caregivers providing support to their families in Ontario. That’s 17% of Ontario’s 3.3 million caregivers. There is no data for young caregivers under the age of 15 but we know there are kids as young as 5-years-old in a caregiving role.

    Young caregivers support their family members in various ways, including by providing personal care (grooming, dressing, medication administration), caring for siblings, providing financial, practical and emotional support. Their care work is often equivalent to a part-time job, with young caregivers providing an average of 14-27 hours of care per week.

    Young caregivers often grow up quickly and lose their childhood too early. They can experience feelings of anger, isolation, loneliness and grief — some suffer from depression or anxiety. Caring work can affect how well they do at school and impact other areas of their life, such as socializing and extracurricular activities. This “young carer penalty” can have long-term effects on their development and well-being.

    “No one should have to choose between their family and their future.” – Young Caregiver

    January 30th, 2020 is Young Caregivers Day! Join the #YCAD conversation on twitter.

    Watch stories from of other child and young adult caregivers.

    How To Identify a Young Caregiver at Risk

    Many young caregivers do not self-identify with this role. Others feel it is necessary to keep this aspect of their lives private to prevent drawing attention to their family situation. This can be out of fear for intervention or out of fear of peers finding out leading to potential bullying.

    There are a range of risk factors to look out for including:

    • Increased stress
    • High levels of anxiety
    • Low self-esteem
    • Loneliness and isolation
    • Difficulty relating to peers
    • Depressive symptoms
    • Self-harm and thoughts of suicide

    Helping Young Caregivers in Schools

    Caregiving can result in time away from school to care for a family member in times of crisis or to attend medical appointments. Many young caregivers report being too tired to attend school or that their sleep deprivation results in poor concentration. All of this can lead to poor academic achievement.

    That’s why it is very important for schools to raise awareness among staff and students about the issues related to young caregivers. Schools can create a safe environment where a teacher is more observant of student behaviour and can identify a potential young caregiver, and where a young caregiver feels able to ask for help.

    Is the student…

    • Often late for school
    • Missing school
    • Consistently tired in class
    • Socially withdrawn
    • Often sad
    • Often anxious
    • Unable to concentrate in class
    • Having behavioural difficulties
    • Missing deadlines for homework or assignments
    • Underachieving academically
    • Unable to participate in extra-curricular activities

    Young caregivers want school staff to be aware of their caregiving role and to receive support from their schools but also wish for it to remain hidden from their peers. Suggestions from young caregivers included homework clubs, mentoring from other students, flexibility, deadline extensions and access to a phone during the day.

    “I feel that people don’t understand me or my caregiving responsibilities. When I have a lot to do at home, I am unable to sleep. Because of this, I am unable to focus and think about anything other than what is going on at home. I fall behind in my [school] work and fall behind in my classes. I have failed tests because I am unable to focus.” – Young Caregiver

    Information from the Young Caregivers Association.

    Support Services for Young Caregivers

    There are several services and supports available for young caregivers:

    Alzheimer Society of Toronto created the Young Carers Meetup program, a series of in-person and online meetings for young caregivers to discuss self-care, responding in difficult situations, and maintaining relationships with their other family members and friends.

    Bounceback is a free skill-building program designed to help adults and youth 15+ manage symptoms of depression and anxiety.

    Emily’s House at Philip Aziz Centre is a children’s hospice that extends their support services to young caregivers who are siblings to a child or youth with a life-limiting or terminal illness and healthy children who have a parent or guardian living with a life-limiting or terminal illness.

    Family Association for Mental Health Everywhere (FAME) is a registered charity brought together by families with a mission to facilitate the development of resilience for families living with mental illness. The charity provides support, education, coping skills and self-care strategies for families and caregivers.

    Gilda’s Club Greater Toronto (GCGT) is a registered charity that provides support, education, and social interaction for cancer patients and their families. The inclusive program adopts a “whole family” approach so that friends and family of all ages can receive the support they need free of charge.

    Heart House Hospice provides grief and bereavement support to dying patients and families, including caregivers and children, so that people can receive end-of-life care at home. Their Children and Youth Grief Network and Helping Us Understand Grief programs help young caregivers understand their caregiving role and learn to cope with the emotions of caregiving.

    Huntington Society of Canada is a non-profit organization that supports people and families living with Huntington Disease through counselling services and medical research. The Youth Mentorship Program allows young caregivers caring for someone with Huntington Disease to meet a mentor with similar experience.

    Kid’s Help Phone is a 24/7 national support service, offering professional counselling, information and referrals, and volunteer-led, text-based support to young people in both English and French.

    Tel: 1-800-668-6868 Text: 686868 Live Chat

    The Powerhouse Project was created in 2003 as a special project of the Alzheimer Society of the Niagara Region. Since then, its mission has grown to promote the well-being of any young caregivers through social, recreational and educational programs in the Niagara and Haldimand-Norfolk Regions. Hospice Toronto has also developed the YCI model for an urban setting called The Young Carers Program. In Waterloo Region, The Young Carers Project was launched in 2011 as a community collaborative working to educate the public about the existence and needs of young caregivers, and has developed resources and programming for young caregivers in the area.

    Roger Neilson House is a pediatric palliative care hospice on the campus of the Children’s Hospital of Eastern Ontario. The Spectacular Incredible Braving Siblings (SIBS) Program supports siblings of children with life-limiting illnesses. Young caregivers learn about self-care and coping strategies for their emotions, as well as information relevant to their sibling’s illness.

    The Teresa Group is a community-based charitable organization that provides support to children and families affected by HIV and AIDS. Various support groups and a summer camp program offer young caregivers an opportunity to learn about coping with the stigma of HIV and AIDS and the stresses of their caregiving experience.

  • Financial Support

    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.

    Tax Credits for Family Caregivers

    Basic Personal and Dependent Tax Credits

    Caregiving Benefits and Leave

    Caregiver Recognition Benefit for those caring for a veteran

    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
  • Ombudsman

    Ontario Ombudsman

    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

    Learn more or make a complaint.

    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.

    Patient Ombudsman

    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).

    To learn more or make a complaint, visit the Ontario Patient Ombudsman or Long-Term Care Action Line.

    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.