Caregiving challenges during COVID-19

Maria shares strategies that helped her family with her father’s transition from an acute care hospital to long term care (LTC) :

1. Ask the LTC staff what their COVID-19 approaches and protocols are to assist in the transition—it can really help to have this assurance.
1. For example, one of the things her father’s LTC staff currently does is give her dad a sanitized phone to talk to family and keep them connected and very up to date.
2. Maria’s family has started using video chats with one another to keep up to date and to stay emotionally connected.

3. A resource Maria has found useful is the Heart & Stroke Care Supporter's Community. Maria highly recommends this resource and reaching out to a community such as this to feel supported. Maria found people in the group to be helpful and reassuring.

Three things Maria wants you to remember as a care supporter:

1. You are not alone
2. Your feelings (whatever they are) are normal and understandable.
3. Be kind to yourself

Maria Dimitraklas is a Heart & Stroke online ‘Care Supporters’ Community’ member in Toronto, Ont.

We are living in a time where actual care environments are socially isolated, and family members are not able to visit their loved ones—so we must use different strategies to connect.

Dr. Cameron highlights the different types of support that are crucial for care supporters:

1. Emotional support: Having others to relate your experiences with. The Heart & Stroke online communities are a good place for people to share these experiences.
2. Informational: Knowing what a stroke, heart disease or COVID- 19 is, and what to potentially expect moving forward.
3. Tangible support and training: Assistance in helping to organize services, knowing what aspects of their loved one’s treatment plan means. Training may also be required for carrying out care activities or to support rehabilitation once at home.
4. Appraisal: Care supporters often note the need for appraisal or receiving feedback, to know how they are managing their caregiving role.

Dr. Cameron advises that individual care supporters’ may prefer different types of support; check-in with your care supporter to determine their preferred type and how you can work together to adapt support during COVID-19.

• Emphasis was placed on the importance for care supporters to understand and prioritize their needs. A way to determine these needs, and an often-useful resource is family meetings. These meetings can extend to who you determine to be in your support circle, friends, neighbours, etc.
  • Individuals within your support circle often want to provide support, but do not know how, or what may be useful for you at this time. These meetings and open communication are important for also removing the stigma associated with asking for help—asking for help is OKAY.
• Questions you can ask your health care team if they are providing home visits:
  • What are their safety protocols during COVID-19 around home visits?
  • Are there health care services we should be prioritizing? Which services are essential?
  • Does your care team or health professional offer telehealth? Or virtual appointments?
  • What reputable resources would you recommend for my loved one and I?

Dr. Jill Cameron is a caregiving expert with the University of Toronto and University Health Network (UHN) in Toronto, Ont.

• There are two H&S online communities: Community of Survivors and Care Supporters’ Community. The two groups are bilingual and moderated by experts who understand both trauma and online community development. They are private groups, so you can speak candidly.
• The social determinants of health and common safety concerns faced by many caregivers at this time were discussed. Key resources and supports were noted (e.g. financial aid, mental health and domestic violence, access to food and social support). Several resources can be found on Heart & Stroke’s website.
  • Click here for Heart & Stroke’s Services & Resources page.
  • Click here for Heart & Stroke’s COVID-19 Information page.
• Many practical hands on supportive caregiving resources exist such as Heart & Stroke’s Taking Action for Optimal Community and Long-Term Stroke Care (TACLS); which provides information to support for those caring for a stroke survivor. Click here for resource.

Key tips from members in the Heart & Stroke online community and Moira:

• You can't do everything. Take 10 mins each day to check-in on yourself. You can’t be the best possible support for others if you are working with ‘half a tank’. That old saying of “put on your oxygen mask first” is ringing true for many right now. Please remember that you are not alone. Heart & Stroke has some resources for managing stress find them here.
• Some safety discussions or advanced care planning may help dissolve some of those “what ifs” that are worrying you.
• Take social media breaks – or limit your exposure to the media to one hour a day.
• Consider your network and stay connected (care team, family, neighbors). If you can't get through, try another method (e-mail, phone, video call, etc.).
• Talk to the medical team before cancelling appointments. They may be needed, or it might be possible to do the appointment by video.

Moria Teed is a Senior Specialist with Heart & Stroke in Ottawa, Ont.