Caregivers

Make sure you don’t ignore the details of your own health. See your doctor and dentist regularly for checkups, remember to take your medications, and follow up on any concerns you have about your health.

When you’re stressed and busy, it’s easier to eat what’s convenient than to prepare healthy meals. However, a balanced diet, with plenty of fruits and vegetables, is important to maintain your health and keep your energy levels up.

It’s easier to cope if you’re well rested. If your caregiving responsibilities make it difficult to get a complete night’s sleep, try taking naps during the day when you can. Also, try to schedule breaks for yourself—some time away from caregiving to relax and recharge.

Even though you may feel exhausted—and perhaps your caregiving responsibilities are physically demanding—try to fit some kind of physical activity or exercise that you enjoy into your routine. This could be simply a short walk or bike ride. Regular exercise can help reduce stress and fatigue, and improve sleep.

Getting enough rest, eating healthy and being physically active are all important basics to help manage stress. In addition, there are a number of techniques you could explore to help reduce stress, including meditation, yoga, deep breathing exercises, visualization and massage therapy. Everyone experiences stress differently—you may have to try different approaches until you find something that works well for you.

Find out as much as you can about what your caregiving involves. Knowing what’s expected of you and what you can expect can help reduce worry and stress. Talk to the healthcare team and the social worker, and make a list of all of the caregiving tasks that you will have to do. Also ask about  symptoms and side effects  that you should be aware of—what you should do to manage them and when you should contact someone for help.

Be clear with yourself and others about what you can realistically do, and what you are comfortable doing, as a caregiver. Focus on what’s most important and try not to worry about small things. You may need to talk to family members or the healthcare team if you can’t handle all of the responsibilities, or there are tasks, such as giving medicines or bathing, that you are not comfortable doing.

Keep important information, such as appointments, medications and contacts, organized and easy to find. Use an agenda, calendar, schedule or an online app to keep track of activities for your loved one and yourself. Having everyday items organized can help reduce stress and frustration.

Many people find asking for help difficult. However, it can be very hard—and stressful—to take on all of the caregiving responsibilities on your own and manage your life as well. Accepting help can relieve some of the pressure you may feel as a caregiver, and can have a positive impact on your health, physically and mentally.

• Consider asking family and friends to help with everyday tasks, such as grocery shopping, meal preparation, housework, babysitting, or picking up prescriptions. People often want to help, but they’re not surewhat they should offer to do. You can also ask them if they would be able to spend some time with your loved one. This would give you a break and provide an opportunity for your loved one to have some social time with others.
• Try sharing the caregiving duties. If your caregiving role is too much for you, especially if you have other responsibilities such as children and a job, talk to your family about sharing the caregiving duties. For example, one person could be in charge of medical appointments, and someone else could do the cooking. Whatever everyone is most comfortable with.
• Find out about homecare or community services in your area. Homecare services are offered by all CLSCs in Québec to help individuals who have reduced autonomy or who require care at home. These services are essential to keep individuals home as long as possible. The CLSC offers various services that can assist caregivers including helping with patient hygiene and other personal needs. Talk to the healthcare team to see if a referral to the CLSC might be appropriate.
• Find out if there is respite care in your area. If your caregiver role is physically demanding, find out if respite care is available in your area so that you can take some time off. Respite care can be provided at home or in a healthcare institution.

It is important to maintain open communication with the individuals that you interact with as part of your caregiving role, such as medical personnel and social workers. Communication is essential for successfully managing challenging situations regarding the care of your loved one. Communication is also important in your personal and professional life. It can help maintain healthy relationships with family and friends, and resolve issues with your employer, if relevant.

• Check in regularly with the healthcare team. Make sure they are aware of any changes with your loved one and of any new challenges you are facing as a caregiver. Also, ask questions about the status of the health of your loved one, and if you need to know anything else about their situation.
• Discuss your expectations and concerns with the person you are caring for. Ask them about their concerns and needs. It can help if you both understand each other’s position clearly. Try not to avoid difficult conversations. This can result in unnecessary stress, anger and resentment.
  • If you would like extra help in the home but your loved one refuses to agree to this, talk to them about their reasons. Also, explain your needs and why you feel the help is necessary in order to be able to care for them properly.
  • If you haven’t already had a discussion with your loved one about advance care planning, you might consider raising this topic with them. If you’re not sure how to start the discussion, or if they are reluctant to talk to you about this, a professionnal from the treating team could give you some  tips on how to get started or facilitate the conversation for you. It’s important that you know your loved one’s preferences regarding medical care in the event you have to make decisions for them. You can get more information about advance care planning in the “Patient and families” section.
• Talk to your employer, or the human resources department of your company, about your situation. Find out what your options are regarding items such as flex time, reduced hours and leave. Ask if there are any employee assistance programs that could help with your caregiving responsibilities. In Canada, there are few programs that allow caregivers to take paid time off in certain circumstances via employment insurance. Ask the treating team if you have any questions. You can also find more information on the following website: www.canada.ca/en/services/benefits/ei/caregiving.html.

It is important to find ways to express your feelings and concerns throughout your caregiving. Sharing your worries and difficult emotions can help you keep a balanced perspective about your role and experiences. On the other hand, ignoring what you’re feeling and what’s bothering you can increase stress levels and drain your energy.

• Keep a journal. Writing in a journal can be an effective outlet for expressing your emotions and worries, and a way to work out issues you may be dealing with.
• Talk to someone. Share your feelings with a trusted friend or family member. Or you might prefer to talk to a professional counsellor, such as a psychologist, social worker or spiritual care provider.
• Join a support group. Sharing information and experiences with people who understand what you’re going through can help ease the burden of caregiving and help reduce feelings of isolation.

Isolation can be an occupational hazard for a caregiver. As much as it is possible, find some time to regularly participate in social and recreational activities. Also, try to spend time with family and friends outside of your caregiving role. Even something as simple as going out for a coffee with a friend can make a difference. Think of activities that you enjoy and are even easy to make happen—especially anything that you know will make you laugh. Ask someone you trust to stay with your loved one if you’re concerned about leaving them alone, even for a short time.

Find ways to pamper yourself. This could be something like getting a massage or relaxing in a hot bath; but even taking breaks to read a book or watch TV counts! It may sound frivolous; however, indulging yourself like this can be soothing and nurturing.

• Government of Canada – Caregiving benefits and leave: www.canada.ca/en/services/benefits/ei/caregiving.html.
• Government of Canada – Caregiver credit: www.canada.ca/en/revenue-agency/services/tax/individuals/topics/about-your-tax-return/tax-return/completing-a-tax-return/deductions-credits-expenses/canada-caregiver-amount.html.
• Government of Québec – Tax credit for caregivers: www.revenuquebec.ca/en/citizens/tax-credits/tax-credit-for-caregivers/.

APPUI proches aidants: http://lappui.org/en. This organization provides support and services to caregivers throughout Québec. Services (all free) include: 

• Caregiver support helpline: Professional counsellors provide support to caregivers who need to talk or need help finding local resources.
• Directory of resources and services by region. The directory includes information for a wide range of services, such as:
  • Respite services
  • Documentation advice
  • Workshop and training activities
  • Legal and tax assistance
  • Home care
  • Transportation.
• Articles, videos and guides on a wide variety of topics of interest to caregivers, such as:
  • Tax benefits
  • Navigating the administrative process
  • Learning about the healthcare system
  • Support groups

CLSCs (local community health services centres): To find a CLSC in your area, go to https://santemontreal.qc.ca/en/public/montreals-institutions-at-a-glance/clscs/. A social worker will contact you if the help you require is related to caregiving. Services provided by CLSCs are free and include: 

• Day centre
• Nursing care at home
• Equipment loan
• Home help
• Psychosocial services
• Physical rehabilitation (long term)
• Home respiratory therapy 
• Occupational therapy at home
• Home nutrition
• Permanent and temporary accommodation for respite care or palliative care

Éducaloi – Caregivers: Practical Legal Tools: https://educaloi.qc.ca/en/web-guide/caregivers-legal-tools/. This website provides information on legal topics relevant to caregivers. Topics include:

• Caregiver rights when balancing work
• Legal healthcare issues related to consent and medical records
• Navigating the health and social services network
• Balancing work and caregiving

Proche aidance Québec: https://procheaidance.quebec. (French only) Includes a comprehensive directory of caregiving groups, associations and local organizations in Québec that support caregivers. 

Biblio Santé – Caregivers Booklet: https://bibliosante.ca/fr/information_sante/proches-aidants.php. (French only) Includes a list of fiction and non-fiction publications and films on the topic of caregiving.

Public Health Agency of Canada: www.canada.ca/en/public-health/services/reports-publications/responding-stressful-events/self-care-caregivers.html. The PHAC’s brochure Responding to Stressful Events: Self-Care for Caregivers provides information on common sources of stress for caregivers, as well as the typical signs of stress and how to cope with them. It also provides guidance on when to seek help.

Canadian Virtual Hospice–Caregivers CAN: www.virtualhospice.ca/caregiving. This website includes:

• Information modules on a range of topics, such as:
  • Self-care strategies
  • Strategies for difficult conversations
  • Preparing for caregiving at home
  • Recognizing symptoms
  • Medications
• Video demonstrations of caregiving tasks.
• A “CareHub” tool to help you improve care coordination, such as managing appointments, symptom tracking, communication with healthcare professionals, medication schedules and a personalized information library.

Carers Canada: www.carerscanada.ca. (English only) Information and resources include:

• Caregivers’ stories
• Organizations supporting caregivers
• Caregiver wellbeing
• Balancing caregiving and work
• Caregiver-friendly workplaces

Health Experiences – Family Caregiving: https://healthexperiences.ca/family-caregiving/family-caregiving. This website has a wide range of videos of real-life stories. You can watch and listen to caregivers talk about their experiences, the impact caregiving has had on their lives, and advice they would give to other caregivers.

CURE Foundation–Looking Forward: https://lookingforward.curefoundation.com/chapters/chapter-6. Looking Forward is a resource for cancer patients in recovery. The chapter on caregiving, however, has a lot of information and resources that would be useful to caregivers at any stage of an illness. Topics include:

• Self-care strategies
• Work-related issues and resources
• Financial resources
• Support groups