Anna Toane
In Canada there is a significant portion of the population who are caregivers, providing “roughly 75 percent of all patient care in Canada.”
“At some point in their lives, more than half of Canadians provide unpaid care to a family member or friend with a long-term health condition, physical or mental disability, or age-related need. These caregivers play an integral role in supporting relatives, friends and neighbours, and they often go unrecognized and unsupported.”
By the numbers:
- 8.1 million Canadians are carers (1 in 4)
- 72% of caregivers provide emotional support
- On average, caregivers devote 19 hours a week to caregiving duties
- 1 in 10 unpaid caregivers support loved ones for more than 30 hours a week
- 43% of caregivers reported missing work, 15% cut down their hours, and 10% passed up a promotion or new job
*Statistics provided by Statistics Canada.
It is a role that is mostly unseen and unacknowledged, often leaving little space for self-care, time away or the bandwidth to seek the emotional, mental or physical support a caregiver might need.
And like the airline safety line says:
‘in order to help others we need to put on our own oxygen mask first.’
The same is true for caregivers who are trying to pour from an empty cup. Often stretched thin, they don’t have adequate support or any number of other challenges, many of which have been exacerbated by the pandemic.
“What is shown by study after study is that caregiving compromises health. About 60 percent of caregivers show signs of clinical depression, and caregivers take more prescription medications, including those for anxiety and depression, than others in their age group. Reluctance in asking for and accepting help is a major barrier to getting necessary respite and support.”
Caring for yourself is one of the most important—and often forgotten—tasks for caregivers. Your physical, emotional and mental health is vital to the wellbeing of the person you are caring for. To be a caregiver, you must take care of yourself.
Caregiver Stress
Caregiving is rewarding and stressful. And when caregivers experience stress, they “can be vulnerable to changes in their own health.”
Risk factors for caregiver stress include:
- Living with the person you are caring for
- Social isolation
- Having depression
- Financial difficulties
- Higher number of hours spent caregiving
- Lack of coping skills and difficulty solving problems
- Lack of choice in being a caregiver
Signs of caregiver stress:
“As a caregiver, you may be so focused on your loved one that you don't realize that your own health and well-being are suffering.”
- 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
Strategies to help manage your stress:
- Accept help
- Focus on what you are able to provide
- Set realistic goals
- Get connected
- Join a support group
- Seek social support
- Set your own health goals
- See your doctor
A Few (Helpful?) Ideas
There are some very helpful ideas shared in the book A Beginner's Guide to the End, which we've summarized and built out here:
- Take time-outs: foster a contemplative practice of some sort - prayer meditation, yoga, the gym, hiking, biking, dancing, gardening, writing. No matter the outlet, fund a way to connect with yourself as well as your spirit
- Share & connect: have a list of people who will listen, without judgement, [without offering solutions] and who will talk about anything. Perhaps this is a colleague, spouse, friend, or even a therapist. It of course doesn’t need to be a therapist, though this could be very helpful too.
- Reach out to friends: they probably don’t know how to help you and would be grateful if you’re able to tell them what might be helpful.
- While it’s certainly a difficult position to be in (where you’re already mentally taxed and it’s up to you to tell people who love you what you need, it’s a vital part of the process).
- We’ve written a few times on the subject - here & here.
- Pace yourself: if your loved one is already in the late stages of an illness it’s likely a matter of a few weeks, meaning it’s a sprint. If it’s months or years, it’s more of a marathon.
- Distract yourself: movies, golf, books, whatever transports you for a bit. What is important to pay attention to here though, is that it doesn’t slide into coping mechanism that might hurt you overtime (like spending a lot of money, drinking too much, etc.)
- Seek respite: finding someone to take your place for a period time will go a long way. Finding an adult day care program, or if engaged in hospice, arranging for your loved one to stay a few nights in hospice house or nursing home. Taking small breaks, as often as possible, and longer breaks now and again is crucial to your wellbeing.
- Pay attention to your own health: Do you need to see a doctor? Are you aching somewhere? Are you keeping up to date with any medication you might need?
- Let an honest answer inform how you setup living arrangements for your loved one.
- Recruit hospice and palliative care: both services support caregivers, and yes (emphatically!) your own wellbeing is reason enough to invite hospice into the equation.
- Find others in a similar situation: there are support groups for different types of caregivers. Whether you’re the husband of a patient with Alzheimer’s, the daughter of someone with ALS, there’s a group for you. “Caregiver support” + “(type of illness)” will help you find these groups.
- [If relevant/applicable] Engage HR: check with your HR department about whether you qualify for or can utilize caregiver leave. Whether you do or not, if you have a positive and trusting relationship with your boss, be sure to talk to them about your situation. Perhaps you can get creative with how to find a bit more support or flexibility.
At the end of the day, you know yourself best and what will work best for you. The trick is: give yourself permission and space to think about what you need and then actually make it happen. Doing so will benefit everyone, including the person you’re caring for.
Ways to Care for Yourself
Caregiving can be physically and emotionally exhausting and it’s vital to recharge your batteries. The below has been copied and pasted from the Harvard Health Blog.
For family members, caregiving can also lead to additional pressures, such as financial strain, family conflict, and social withdrawal. Over time, caregiver stress can lead to burnout, a condition marked by irritability, fatigue, problems with sleep, weight gain, feelings of helplessness or hopelessness, and social isolation.
Caregiver burnout is an example of how repeated exposure to stress harms mental and physical health. Chronic stress triggers a release of stress hormones in the body, which can lead to exhaustion, irritability, a weakened immune system, digestive distress, headaches, pains, and weight gain, especially in the midsection of the body.
Your body does have a natural way to combat stress. The counter-stress system is called the “relaxation response,” regulated by the parasympathetic nervous system. You can purposefully activate the relaxation response through mind-body practices like yoga, tai chi, meditation, and deep relaxation techniques.
- Self-compassion is essential
- Being kind to yourself builds the foundation to self-care. Self-compassion means giving yourself credit for the tough, complex work of caregiving, stepping away from the self-critical, harsh inner voice, and allowing yourself time — even if it’s just a few minutes a day — to take care of yourself.
- Lack of time or energy can make getting that time away particularly challenging. You may even feel guilty or selfish for paying attention to your own needs. What you need to know is this: in fact, practicing self-care allows the caregiver to remain more balanced, focused, and effective, which helps everyone involved.
- Practice simple breath awareness for 10 minutes a day
- One of the simplest deep relaxation techniques is breath awareness. Here is one you can try:
- Find a comfortable seated position on a chair or cushion.
- Close your eyes and begin to notice your breath.
- It is common to have distracting thoughts come and go, but just let them pass, and gently bring your attention back to your breath.
- Breathe in slowly through your nose for five counts, hold and pause for five counts,* and exhale for five counts.
- Continue for 10 minutes. You may substitute phrases for the counts such as:
- I breathe in calm and relaxing energy.
- I pause to let the quiet energy relax my body.
- I breathe out and release any anxious or tense energy.
- For deeper relaxation, gradually extend your exhalation, until you reach an exhalation twice the length of the inhalation (10 counts).
*Breathing exercises should not be painful or uncomfortable; if holding your breath is uncomfortable, just eliminate the pause between the inhalation and exhalation.
- Try a mind-body practice like yoga, tai chi, meditation, and deep relaxation techniques.
- Make eating well and getting quality sleep priorities.
Accessing Support
Integrating Care for Yourself
Guilt is a common feeling in the landscape of caregiving and while it can be difficult to maintain any semblance of “normal,” it is important to maintain connections (to the best of your ability) to feel less isolated and prevent burnout and to prioritize your own care. The last thing you need is another reason to feel guilty, so be gentle on yourself and do what you can, when you can.
Realizing you’re not alone and that others are going through similar experiences nurtures your ability to be self-compassionate, which is where all self-care begins.
“Taking care of yourself means putting your own needs first and includes getting consistent sleep, regular exercise and healthy nutrition. This kind of self-care will allow you to be a better caregiver. Try [as best you can] to live in the moment and seek peace within yourself. You still deserve to enjoy life, laugh and have fun — so [try not to] feel guilty for your own happiness when you're gifted with moments of joy.”
We’re here to support and have made it our mission to unpack difficult conversations around end-of-life planning and help families navigate the complexities of death care. To learn more and access additional resources visit www.eirene.ca