Caregivers

From the moment your loved one was diagnosed with PH, your life considerably changed. Chances are, as your shared journey with PH has continued, you have also taken on the role of a “caregiver.”

Services that support caregivers are available across Canada. Many of these organizations offer support, resources, and tools at the local, provincial, and federal level.

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Find your local support organization

Family Caregivers of BC defines a “caregiver” as a family member or friend who gives unpaid care to an adult, either at home or in a facility, who has a physical or mental health condition, chronic illness, or frailty due to aging*. Caregivers in Canada represent 28% of the total population**. In the 2021 Canadian PH Community Survey, 64% of PH patients reported having a caregiver.
 
If you help someone (or multiple people) in your life or community with any of the following activities, you are considered a caregiver:
 

• Meal preparation, house cleaning

• Home maintenance

• Running errands/getting groceries

• Helping with a bath/shower and getting dressed

• Medical procedures or treatments, including medication management

• Attending appointments

• Coordinating care, support services, or appointments

• Banking, paying bills, or managing finances

• Talking with doctors, nurses, care managers

• Handling crises and arranging for assistance

• Visiting or regularly calling to ensure someone is safe and has their day-to-day needs met

• Providing emotional support

 

Not everyone identifies as a caregiver; however, if you are responsible for or do any of the above activities regularly, you fit the description.

Caregiver is just the title, not the job description. There are many roles to juggle, from chef, companion, nurse to advocate, chauffeur, and more. Roles and tasks that perhaps you used to share with your loved one may now fall only into your hands.

The 2021 Canadian PH Community Survey revealed that caregivers are struggling – at home, at work, and in their personal lives.
 

• 70% feel that PH negatively impacts their daily life

• 49% need access to counselling/emotional support as a result of their loved one’s PH diagnosis

• 46% feel isolated and excluded from society because PH is not a visible disease

• 31% report that their relationships with friends have changed in a negative way

• 41% report that PH has negatively impacted their employment status

• 48% report that PH has forced them to take one or more temporary leaves from work or school

 

With the many demands that caregivers face, it may feel as though there is little time for self-care. This is understandable, as caregivers are most often focused on their loved ones and may not recognize the impacts on their own health and well-being.
 
Watch for these common signs of caregiver stress:

• Feeling overwhelmed or constantly worried

• Feeling tired often

• Getting too much sleep or not enough sleep

• Gaining or losing weight

• Becoming easily irritated or angry

• Losing interest in activities you used to enjoy

• Feeling sad

• Having frequent headaches, bodily pain, or other physical problems

• Abusing alcohol or drugs, including prescription medications***

 

Sources:

https://www.mayoclinic.org/healthy-lifestyle/stress-management/in-depth/caregiver-stress/art-20044784
https://www.familycaregiversbc.ca/wp-content/uploads/2020/07/Are-you-a-family-caregiver-FINAL.pdf
**Statistics Canada. (2013). Portrait of caregivers, 2012. Catalogue no. 89-652 X- No.001. Ottawa, ON: Statistics Canada Social and Aboriginal Statistics Division, retrieved from https://www.statcan.gc.ca/pub/89-652-x/89-652-x2013001-eng.htm