Caregivers and Increased Demands During the Pandemic - Autism Awareness

Caregivers and Increased Demands During the Pandemic

The pandemic has changed many aspects of our lives. Caregivers have had increasing demands and responsibilities placed on them because of lockdowns, program cancellations, difficulty retaining staff, illness and quarantines, new protocols and school closures. Community organizations have closed their doors to in-person meetings and have switched to online and phone support for their clients and members. Increased isolation has made caregivers feel alone and isolated without access their support systems such as family members and friends.

We are now at the one year mark since the pandemic began and many caregivers are feeling burned out. There will more than likely be another year of restrictions in place until the vaccination program is well established.

In January, the Globe and Mail published an interesting article on the extra pressure caregivers are now facing. They said:

It’s estimated that the labour provided by family caregivers accounts for roughly 75 per cent of all patient care in Canada, saving taxpayers between $24-billion and $30-billion in health care costs a year. More than eight million Canadians are caregivers – and nearly half of us will become one at some point in our lives.

Aside from any burdens they may share, the one thing advocates say virtually all caregivers have in common is feeling invisible. Many caregivers and advocates the Globe spoke with say they don’t feel supported or respected by the health care system – and that their work caring for others goes largely unacknowledged.

In October 2020, The University of Alberta released a report entitled A Tale of Two Solitudes Experienced by Alberta Family Caregivers during the COVID-19 Pandemic. The data in this report gives an accurate picture of what caregivers have been facing during this unprecedented time. I took part in this caregiver survey to bring representation of what life is like caring for two adults on the spectrum who have lost every community opportunity that they had for a life outside of our home, and the pressure my husband and I feel trying to work from home and provide their care with very few breaks 7 days a week.

While this survey gathered data from families in Alberta, it would describe an accurate picture of caregiver demands in many communities.

Highlights from A Tale of Two Solitudes

Over half of the caregivers completing the survey reported at least one or more of these symptoms of stress.

•57% of family caregivers agreed that since the COVID-19 pandemic they have “not been able to take a break”.
•68% of family caregivers agreed that since the COVID-19 pandemic they were always “thinking about all care tasks they had to do”.
•79% of family caregivers agreed that since the COVID-19 pandemic, they have been “feeling more frustrated”.
•62% of family caregivers stated that since the COVID-19 pandemic they were “not sleeping well”.

Anxiety is the most frequently occurring psychological disorder among family caregivers. Typically, family caregiver anxiety rises as care responsibilities increase and energy levels are depleted.

•78% of family caregivers reported anxiety.
•85% of family caregivers reported loneliness.

Family caregiver’s health deteriorated. Higher intensity care (care overload/ worry) has a negative impact on the caregiver’s health. Since the outbreak of COVID-19:

•58% of family caregivers noted a deterioration in their mental health.
•48% of family caregivers noted a deterioration in their physical health

Recognizing When A Caregiver Needs Support for Their Health

Excessive stress can appear as other illnesses. Physical and mental health symptoms to watch for include:

  • feeling overwhelmed
  • gaining or losing weight
  • feeling sad
  • constant fatigue
  • becoming easily irritated or angry
  • frequent headaches or body pain
  • sleeping too much or not enough
  • losing interest in activities that used to be enjoyable
  • coping with stress by using drugs/alcohol

Ten Tips for Managing Caregiver Stress and Other Symptoms

Here are 10 tips to help manage stress and provide some relief to the demands of providing care.

  1. Accept help. Reach out to friends and family if you can and ask for help such as having a meal made or ask them to run errands.
  2. Focus on what you are able to provide. Feel good about what you can do and try not to feel guilty about what you aren’t able to accomplish. I am working on accepting that I can’t support my children with daily exercise even though I’d like them to do it to help with their anxiety. Some days are better than others.
  3. Set realistic, small goals. I wrote about some ideas for small goals in this blog post. A small goal could be reading a few pages of a book or cleaning out one drawer. Keep it manageable. Accomplishing small tasks feels good.
  4. Find resources to make life easier. Having groceries delivered may be easier than going out and shopping in person. Local libraries offer many great services for free.
  5. Join a support group. Many local autism societies and disability groups are offering support groups online. Your church may offer something as well.
  6. Connect socially. Try to socialize with family and friends to get emotional support. For myself, I continue to workout with my figure skating group online twice a week. It keeps me in touch with my club members and we always have a little visit after the workout is done. I message with my sister every day who lives far away but the daily connection helps my outlook on life.
  7. Speak to your doctor. Talk to your doctor if you are feeling overwhelmed and unwell. They can help direct you to resources and come up with a personalized plan for your well being.
  8. Try to exercise daily. A short walk, some stretching, yoga or lifting a few weights can support feelings of well being.
  9. Eat healthy. Try to maintain a healthy diet. I cook soups and stews in larger batches and freeze the leftovers. They come in handy on days where I am too overwhelmed to cook.
  10. Disconnect from electronics for a period of time everyday. Limit how much news you read. It’s also good to unplug at least an hour before bed to help get a good night’s sleep.

It’s important to support and nurture caregivers so that they can continue to support their loved ones who depend on them. We also need to recognize that they can’t do it alone and need community resources to ease their responsibilities. Caregivers need to be able to thrive, not just survive. If you know a caregiver that needs support, reach out. Sometimes we are too overwhelmed to ask for what we need, but an offer of help can go a long way in fostering health and well-being.


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