Episode 11: All about Caregiving with guest Craig Knowles
There are approximately 8 million informal caregivers in Canada – that is more than 1 in 4 Canadians who put in regular hours to care for their loved ones, family members and friends. Today we’re joined by Craig Knowles who has lived experienced as an informal caregiver for his partner and aging parents. Being an effective caregiver is fulfilling, but many caregivers experience symptoms of caregiver distress, including anxiety, depression, burnout, and difficulty sleeping. In this episode, Craig shares his knowledge and provides tips and advice on being an effective caregiver, which includes time management and prioritizing his health.
Meet Craig Knowles
Craig Knowles is a middle-aged man who has been in a happy and healthy relationship for the last 26 years. He applies his knowledge and experience on caregiving to his partner with health challenges and his aging parents (currently – for his 91-year-old mother and previously – for his father before he passed). Aside from caregiving, he is also very active through community engagement. His previous professional life has been a political one, where he worked as an assistant to a public figure.
Impacts of Caregiving
Caregiving impacts social, political, professional and economical aspects of one’s life. As a caregiver, your number one priority is the care you are giving in order to be effective. So, you have to re-arrange your social life and manage your priorities. Professionally, caregiving makes you mindful of your intentions going forward and makes you constantly re-adjust your goals.
Being an Effective Caregiver
Being an effective caregiver is made up of your values of compassion and humanity. Also, you need to think about what you expect of yourself, in terms of self-respect and integrity, and you’d like to impart that on another human being – especially those that you love (for Craig, that’s his parents and his partner). For Craig, grounding his caregiving approach (for his parents and his partner) in self-respect and integrity is what motivates him. At the same time, however, in order to be effective, you need to have healthy distractions. It is important to take some time out for yourself – you have to be really disciplined about that. For example, Craig will take two hours a day on himself to do activities that he likes, such as finishing a book, watching a movie, answering emails, or exercising. These are really good and healthy distractions. You have to discipline yourself in order to be an effective caregiver and part of that is recharging your batteries. The other aspect of keeping yourself healthy - as a caregiver - is also having distractions that are outside of your social life. What are your passions and interests? In Craig’s case, this involves community engagement – for example, sitting on the board for non-profit organizations and volunteering in the political sphere. Craig uses these healthy distractions to recharge his batteries, so that he is able to come back to caregiving feeling fulfilled (instead of having his whole life being described as a “caregiver”).
Caregiving and Time Management
Time management is an integral component of caregiving. You have to discipline yourself in terms of time-management. Everything works on the clock. First of all, you have to be motivated to spare the time for yourself for all the right reasons – to be healthy and recharged. But, time management is critical because the care-recipient is also involved. You have to structure your days and your time really well. One tip that Craig uses is he has separate calendars for each of the people that he is caring for. He creates duplicates – he has a copy and the person he is caring for also has a copy. This way both parties know when appointments or social outings have been scheduled and when you are busy with other things.
Navigating the Healthcare System
For Craig, learning the complexity of the Canadian healthcare system and how to navigate it well has been done through trial and error. Ask the right questions and note the answers as “information resources” but be sure to double-check and follow-up on the information for yourself. It is also important to find out what you are entitled to, in terms of what the system offers. A lot can be uncovered about valuable resources and the location of the resources by doing some research online. Also, be sure to ask follow-up questions from your treating physician. It is the treating physician’s job to take care of you physically, but they also likely have a team – including a social worker - which can also be tapped for information.
Sustaining and Maintaining Quality Life for Aging Parents
Identify what your parents appreciate out of life and what gives them the most joy. As they age, it is inevitable to have abrupt losses. So, it is important to re-engage them socially. Craig’s strategy is to create regularity around the activities. For example, Tuesdays and Wednesdays are for exercises. Fridays are for lunch at the social club. On the weekends, Craig and his partner plan at least one dinner or lunch with his mom. Craig also encourages his mom to get her phonebook out every week and make a point of calling a least one person every day. If those calls become habitual, that’s a great social interaction. Get these kinds of activities into the care recipient’s regular schedule, so that they feel purposeful and appreciated - not alienated. It’s about regularity, as well as the likes and capabilities of the care recipient. The habitual component is extremely important, because it removes the cognitive load of thinking about what you should do day-to-day. Also, from Craig’s experience, he finds that working through a schedule helps his mom to function well, by providing a structured routine, and it also gives her something to look forward to.
Statistics on Informal Caregivers in Canada
There are approximately 8 million informal caregivers in Canada, a million of whom are over the age of 65. These unpaid caregivers provide the equivalent of 1.2 million full-time jobs. In addition, the services they provide yearly is estimated at approximately $25 billion dollars. Lastly, around 45% of unpaid caregivers exhibit symptoms of caregiver distress, including anxiety, depression, burnout, and difficulty sleeping.
Prioritizing Your Health as a Caregiver
Be very strict about the time you take for yourself
Be resourceful and find out the tricks of the trade
Know your entitlements as a caregiver (e.g., through the tax systems and benefits). Find out what establishments offer free massages, as well as learning or support sessions for caregivers.
Seek regular help from a psychotherapist, as needed. Your mental health should be a huge priority. Psychotherapists offer an unconditional and safe environment to be heard. Therapy sessions are a great place where you can go to decompress mindfully.
You can only be an effective caregiver, if you take care of yourself.
Where can you go to find Resources for Caregivers?
Unfortunately, none of the resources that Craig has come across throughout his years of caregiver have been provided through a centralized location. But, a lot of the satellite services that Craig uses are run through not-for-profit agencies throughout the Greater Toronto Area. Some examples of the wonderful services that Craig has used have been provided through organizations such as Dixon Hall (click here to access their website), and Bellwoods (click here to access their website). These agencies provide a plethora of caregiver services – e.g., tax clinics, free massages, respite, etc. Unfortunately, a lot of people don’t know about these services.
How does Policy affect Caregivers?
Policy is critical and it’s what drives the resources and agencies that Craig spoke about. Public policy trickles right down into the not-for-profit agencies. Unfortunately, from Craig’s perspective, there’s a lack of coherency in healthcare provided – from hospital to home. There are inconsistencies in the services provided, which ultimately compromises care. We have enough good examples worldwide, especially from Scandinavian countries, where they have a very practical, hands-on, and dignified approach to caring for seniors (in the same way that they nurture their youth).
Social policy is really a key determinant of the quality of life for someone that requires care. Social policy should be driven by values as opposed to budgets. Social deficits and fiscal deficits go hand in hand. Social deficits are when you leave a population vulnerable, by limited access to healthcare. This creates an even larger population that needs care. Craig believes that it is integral to incorporate the voice from those with lived-experience (as caregivers or people that have been through the healthcare system) and experts that have studied the field to inform public policy.
Advice for Caregivers
Do the best you can
Take a deep breath
Take a step back and identify the priorities: your priorities and the priorities of the person you are caring for
Do not be shy to ask for help. There’s no pride lost in asking for help and saying the words “I need help,” if you’re feeling overwhelmed.
Make that visit to your physician and share information with them. A good family physician is a great place to get information about the resources that are available for caregivers and care recipients.
Make sure to draw a line between being personal and emotional, because it can suck you in and that can drain you. You have to change your attitude, when you are caregiving. If you invest totally emotionally in it, it’s not going to be sustainable.