Caring for an Adult

In Ontario there are 3.3 million caregivers; ordinary people who provide physical and emotional support to a family member, partner, friend or neighbour. 

The 2019 Spotlight Report indicates that almost 1 in 3 caregivers (29%) support an adult between the age of 25 and 64. In some cases it may be a short-term situation i.e. surgery or a minor accident. In other cases, it may be a longer-term condition that is complex and requires support from many different organizations. Regardless, the Ontario Caregiver Organization is here for you.

Learn more about caregiving, tips on caring for yourself and an adult with physical and/or emotional 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.

    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.

  • 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

    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

    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.

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

    BounceBack by CMHA Ontario

    Offered in partnership with the Canadian Mental Health Association (CMHA) Ontario, BounceBack Ontario is a free, guided self-help program that’s effective in helping people aged 15 and up who are experiencing mild-to-moderate anxiety or depression, or may be feeling low, stressed, worried, irritable or angry.

    For more information, visit BounceBack Ontario.

    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.

  • 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, Privacy & Consent
  • 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.

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