Welcome to the Caregiving section.
When people become ill or acquire a disability, they may require support to remain in their homes and communities. Being more dependent on one’s family and friends may change those relationships. A spouse, child, sibling, neighbour, or friend may find that they are now also a caregiver – the person primarily responsible for seeing that another person’s physical, emotional, and social needs are met. Caregiving can be paid or unpaid, formal or informal, short term or long term. Caregiving can involve many types of roles and responsibilities such as managing medications, providing personal care, handling finances, finding services, driving, meal preparation, and housework. Each caregiving experience is unique. Being a caregiver can be rewarding and offer a sense of purpose, but it can also be overwhelming, frustrating, and exhausting. That is why it is important for caregivers to also care for themselves.
As a caregiver you will likely feel a range of emotions. Being a caregiver can be a rewarding experience, offer a sense of purpose, and provide an opportunity for you to feel a sense of giving back to a loved one. Usually, caregivers experience both positive and negative feelings that co-exist together. For example, as a caregiver you may also feel:
● uncertain about the future
● anger or resentment towards your situation, or directed at another person
● anxious that you do not know how to do all the caregiving tasks
● fear that you will start to regard the care-receiver as a burden or that you will lose patience
● guilty for not being able to do everything or for taking a break
● frustration with having to give up a job to become a caregiver
● overwhelmed or exhausted by caregiving activities, interrupted sleep and having no time for yourself or your friends.
Many caregivers deal with a range of powerful feelings. These feelings are normal and denying them can lead to anxiety and depression. Sometimes, they can get in the way of being an effective caregiver. It is important that they are dealt with and that you take care of yourself.
Here are some suggestions for managing your emotions if they are having a negative impact on you and your caregiving duties:
● Don’t be afraid – or too busy – to seek help if negative feelings overwhelm you. Talk to friends and family. Speak with your doctor. Take advantage of counseling programs such as “Doorways” that is available throughout our province.
● Keep your perspective. Consider all the positive contributions you are making.
● Take care of your own emotional and physical needs.
● Take time to grieve when you need to but take time to celebrate the happy moments too.
● If possible, try not to take on more than you can handle.
● Use respite care when you need a break. Respite information is available through the Community Supports Program in your region.
⮚ Accept help when it is offered:
Family, friends, and neighbours will often say, “Let me know if you need help.” As a busy caregiver, be sure to take them up on their offers, but provide some guidance. Most people want to help, but do not know how. It’s important to let them know how they can be of support. It might be cooking a meal, emailing friends to update them about how a loved one is doing, or perhaps asking people to plan their visits rather than dropping by unannounced.
Be prepared. Assign tasks. Here are some tips for asking others for help:
● Make a “to do” list of specific chores and who can help with them.
● Ask friends and neighbours what they would like to do.
● Express appreciation for help given.
● The individual you are caring for may be eligible to receive home support for personal needs from the Provincial Community Support Program. Information is available at: https://www.gov.nl.ca/hcs/seniors/community-support-services/
⮚ Organize Day to Day Schedules:
There are many responsibilities associated with the caregiver role. The day-to-day tasks can feel overwhelming. Here are some helpful organizational tools that can assist in reducing the stress associated with day-to-day care:
● Create a To Do List or a Daily/Weekly Care Plan specific to the needs of the individual who is receiving care. For example, consider daily activities required, include a section for date and time, and a section to write the name of the caregiver who will complete each task (if there are multiple caregivers involved).
● Create a list of community services and their contact information. If you are looking for a service call 211, or SeniorsNL at 1-800-563-5599.
● Use a medication chart that documents details such as the name of the medication, dosage, time to be taken, and other applicable instructions. Your pharmacist can help with this.
● Meal Plan Charts are a helpful tool to prepare for the week and the groceries required.
● Create a list of Emergency Contacts. Include individuals who are available to help in an emergency, tasks they can help with, and the amount of time they are available.
It is helpful to keep these lists and plans where they can be easily found. For example, post lists on the refrigerator or a bulletin board in plain site.
⮚ Stay Healthy:
It is easy to neglect your own nutritional and sleeping needs when caring for the needs of another. Staying healthy by eating well can help you manage stress more effectively. Sleep is also important as it allows your body to restore itself. Physical activity, too, keeps your body and mind fit and better able to cope.
Eating Well with Canada’s Guide recommends:
● enjoying foods from each of the four food groups
● eating mainly whole grain products, vegetables, and fruits
● drinking reduced-fat milk
● baking, broiling or microwaving food instead of frying
● eating more peas, beans, and lentils
● reducing chips and chocolate snacks
Getting a good night’s sleep:
● develop a regular routine; try to go to bed and wake up around the same
time each day
● have a relaxing bath or read a book before bed
● avoid strenuous activity close to bedtime
● Physical activity is more than just playing sports. It can include everyday
things like walking the dog, digging in the garden, and raking the leaves.
● Look for tips in Canada’s Physical Activity Guide to Healthy Living at www.phac-aspc.gc.ca/hp-ps/hl-mvs/pa-ap/index-eng.php
⮚ Communicate Effectively:
A caregiver may be able to help the care-receiver maintain a sense of control over their life. Here are some ideas:
● Ask questions: What do you need? What are you thinking? What are you feeling? How can I help you? What is your plan? How are you coping? What is the best way to do this?
● Work together: If possible, work together and look for information about resources and supports to make a “care plan” together. Don’t know what is available? Call 211, or if you are looking for a service for a senior, call SeniorsNL at 1-800-563-5599.
● Be honest: Provide accurate information on the care-receiver’s condition, but also share information on positive research with the care-receiver. Be honest about what you can and cannot do.
● Be prepared: Your care-receiver may express strong emotions.
● Be silent: Sit quietly and wait for the expression of thoughts, feelings, and needs.
● Celebrate: Remember and enjoy the good moments. Create memories.
● Listen: Do your best to understand the meaning of what is said.
Burn out can be described as a state of physical, mental, and emotional exhaustion. Caregivers often try to do more than they have the time, money, and or energy to manage. While trying to manage caregiving tasks you may find yourself neglecting your own emotional, physical, and spiritual health.
The warning signs of burn out or compassion fatigue can include:
● Irritability, anger
● Feeling pulled in many directions
● Withdrawing from life
● Change in appetite/weight
● Change in sleep patterns
● Getting sick more often
● Feelings of helplessness or hopelessness
● Feelings of wanting to hurt yourself or the person for whom you are caring
● Excessive use of alcohol, medications, or sleeping pills
● Feeling stressed in the patient’s presence
● Difficulty concentrating
● Missing appointments
It can be difficult to acknowledge, but you are the priority! It is just like when you are in an airplane; you need to put on your own oxygen mask before you help your travel partner. Taking care of yourself allows you to take care of another. It is important to be proactive and take steps to get your life back into balance if you are noticing warning signs of burn out.
Reach out for support from a loved one or doctor and communicate your feelings.
● Complete a community check to see what circles of support are available (e.g., seniors’ groups, family resource centres, public health services, caregivers’ support groups). Don’t know what is available? Call 211, or if you are looking for a service for a senior, call SeniorsNL at 1-800-563-5599.
● There may be support groups associated with the condition impacting your care-receiver that you can meet with on a regular basis or for a one-time consultation (e.g., Alzheimer Society, Cancer Society, Parkinson Canada, Lifewise, etc.).
As a caregiver, it is important to recognize when you need a break, and that it is okay. Taking a break is important to maintain your mental health and well-being, and there are services that can help.
Respite refers to different services that may be available to caregivers so they can take a break from their caregiving responsibilities. Identifying your care-receivers’ requirements, abilities, and preferences will help you find the right match. There are two types of respite care services:
In-Home Respite Services can be arranged directly or through a home care agency. Respite can be provided by family, friends or through paid home support staff from a homecare agency. The service can range from a few hours of care to overnight care.
Out-of-Home Respite Services refers to adult day programs (designed for older adults who can no longer manage independently and may include planned activities to promote well-being), or residential respite care (e.g., hospitals, personal care homes, and nursing homes).
Financial stressors can arise when taking on the caregiving role. For example, needing to take time off work and/or transportation expenses. There are several financial supports available to assist caregivers:
Community Support Services are in each of the Regional Health Authorities in Newfoundland and Labrador. The Home Support Program is available to residents of Newfoundland and Labrador including seniors (65+) with personal care needs, adults with disabilities, children with disabilities, or those who require end of life care or short-term support upon discharge from hospital to help in recovery. Arrangements for personal care will vary based on needs and financial eligibility. There is an option for family members to be paid as a caregiver, however, spouses and common-law partners are not eligible. There is also a Special Assistance Program which provides basic medical supplies and equipment to assist with activities of daily living for individuals living in the community who meet the eligibility criteria. Details are available at: https://www.gov.nl.ca/hcs/seniors/community-support-services/
Employment Insurance Caregiving Benefits may be an option. EI provides financial assistance while you are away from work to care for or support a critically ill or injured person or someone needing end-of-life care. As a caregiver, you don’t have to be related to or live with the person you care for or support, but they must consider you to be like a family member. For details, call 1-800-206-7218 or visit Government of Canada website: https://www.canada.ca/en/services/benefits/ei/caregiving.html
Canada Caregiver Credit is a non-refundable tax credit that can reduce the amount of taxes that you owe. The credit may be available if you support a family member with a physical or mental disability. An individual is considered to depend on you for support if they rely on you to provide them regularly and consistently with some or all of the basic necessities of life, such as food, shelter, and clothing; and are one of the following:
● your spouse or common-law partner
● your (or your spouse’s or common-law partner’s) child or grandchild
● your (or your spouse’s or common-law partner’s) parent, grandparent, brother, sister, uncle, aunt, niece, or nephew (if they resided in Canada at any time in the year)
Click HERE for details about the Canada Caregiver Credit.
Employee Assistance and Benefits may be available if you are working and you a health care plan and/or an Employee Assistance Program (EAP). Contact your employer, manager, human resources department, union, or employee representative to learn what benefits and services might be available to you. For example, you may have coverage of medically related caregiving expenses, time off work or changed hours, paid or unpaid leave, and/or support from the Employee Assistance Program.
Grief is the experience of loss, and it is commonly experienced by caregivers for many reasons.
The life and relationships you once had may have changed significantly and you can feel the loss of your old life. There may be activities and interactions that gave you pleasure that you can no longer do.
Grief is also the range of physical and emotional feelings we sometimes have when faced with, or waiting for, the loss of a loved one. Examples might be the grief a husband feels when his wife passes away, or the grief a daughter feels as she watches her father’s illness progress: “As my father’s disease developed, he would lose more and more of his abilities. It was as if every time I saw him, I had lost more of him causing me to be in a constant state of grief.” From: www.carerscanada.ca/cgs-debbie/
When you are grieving you may be unable to eat, have trouble sleeping, have panic attacks, or experience depression. When you are suffering a loss, there are typically four stages of grieving:
● Accepting the reality of the loss
● Experiencing emotional pain and/or anger
● Adjusting to living in a different way, or without the loved one
● Letting go
Everyone is different. There is no set time for how long grieving will or should last. To help you deal with your grief, you might consider connecting with your church, a counsellor, a social worker, or a healthcare pastoral care provider: https://www.gov.nl.ca/hcs/mentalhealth-committee/mentalhealth/counselling-options/
Changes in the health of your care-receiver may signal the need for you to help plan their end-of-life care. This may mean understanding a new set of health-care systems such as hospitalization, long-term care, and palliative care. These changes may bring another wave of mixed emotions: grief, sadness and possibly relief.
Palliative care is sometimes called hospice palliative care or end-of-life care. It is an approach to caring for individuals who are living with a life-threatening illness, whether they are young or old. Palliative care is about achieving comfort and good quality of life while ensuring respect for the person who is nearing death. Palliative care takes care of different aspects of end-of-life care by:
– managing pain and other symptoms
– providing individuals with social, psychological, cultural, emotional, spiritual, and practical support
– supporting caregivers
– providing support for bereavement
Some people want to die at home. End-of-life-care can take place in a home setting, a hospital, or a long-term care facility such as a nursing home or a hospice.
Palliative care services are usually provided by a team of care workers.
The team may include nurses, physicians, social workers, spiritual advisors, bereavement support workers, trained volunteers, and informal caregivers such as family members, who work to meet the needs of the individual, family, and loved ones. For information on end-of-life supports in your area, contact your Regional Health Authority or healthcare provider.