The Struggle of Aging Caregivers - Autism Awareness
The Struggle of Aging Caregivers

The Struggle of Aging Caregivers

I read an excellent article in the Globe and Mail about the struggles an aging population has with trying to balance work, personal life, and caregiving responsibilities. While caregiving is a labor of love, it also has another side to it that affects employment, physical/mental health, and well-being. As we age, we also have to assess how feasible is it to provide this support long-term. When I look at my own situation caring for my two autistic adult children who are now in their 20s, I worry about the future but also feel stuck on how to move forward because of the lack of affordable housing, financial supports, and the difficulty finding and keeping staff. I’m so tired trying to do it all that I fall asleep sitting up on the couch at 7 pm most nights.

The conversation around autistic people aging and the supports that they will need is just beginning. For the most part, their care is the responsibility of family members. Congregate settings may not work for this population and aging at home may be the best option for long-term happiness and well-being. How can we make aging in place a reality without taking a toll on aging family members?

Not only have we launched the initiative to create a National Autism Strategy, there is also call for a national caregiving strategy.

Here are some highlights from the Globe and Mail article that can help shed light on the quiet struggles of aging caregivers and the impact this has for all Canadians.

Some Statistics on Caregiving

In 2018, 1 in 4 Canadians cared for family members or friends who were aging, had long term health conditions, or physical or mental disabilities, according to Statistics Canada. The Canadian Centre for Caregiving Excellence (CCCE) reported that Canadians spend 5.7 billion unpaid hours on caregiving each year. A lack of help for carers costs the Canadian economy $1.3 billion in lost productivity annually, according to a report from the National Institute on Aging. Caregivers  spend an average of $5800 a year on expenses, according to a 2017 study. That figure would be higher now with inflation.

The pandemic also took its toll on caregivers. An detailed report from the University of Alberta highlighted the struggles of family caregivers during this time. Have we been resilient and bounced back from effects of the pandemic? Personally, I don’t feel like I have.

A 2018 report from Statistics Canada showed that women take on more of the daily time consuming tasks than men. In 2015, women spent 3.9 hours per day on unpaid work as a primary activity—1.5 hours more than did men. Women provide care in peak earning years, a time that is crucial for career advancement. This in turn affects retirement and quality of life.

Accessing Supports

Many caregivers are unaware of the financial supports available to them and government portals for tax information are often difficult to navigate. Supports for caregivers vary widely by province. Nova Scotia has a Caregiver Benefit Program that offers $400 a month to people who put in 20 or more hours a week providing help to adults in need of care. New Brunswick has a $106.25 a month benefit for informal caregivers. Caregivers Alberta collaborates with MatchWork and the University of Alberta to help caregivers find flexible work to help them balance their responsibilities at home.

The Government of Canada has a list of caregiver benefits on their website. You can find a list of resources for seniors listed by province here.

Siblings Canada provides support to siblings of people with disabilities. A comprehensive list of caregiver support organizations can be found here. Stories for Caregivers shares knowledge of caregiving through stories to help build empathy for better health care and social policies, and drive family and friends to available resources and communities of support.

Why We Should Care More About Caregivers

The Canadian Medical Association Journal published an article in March 2019 on why we need to care more about caregivers. While the focus of this article is mainly on caring for older adults, much of the information would apply to caring for adults with disabilities too. Every day, 28% of the Canadian population provides care and nearly half the population will be a caregiver at some point.

Caregivers in distress experience a range of adverse outcomes, including deteriorations in mental and physical health, disruptions in social and family relationships, and increased risk of death. These outcomes will in turn affect those in the caregiver’s life. Caregivers also need protection from economic and retirement insecurity.

We can do a much better job of supporting informal caregivers in the workplace by developing more flexible workplaces that accommodate caregiving duties and provide better access to paid leave and benefits. For example, the pandemic experience has shown us that people can work from home and still be productive. Most employment caregiving benefits center around someone who is dying, but the reasons for needing time off work are often for more complex.

We have the potential to do so much more for informal caregivers. Paid caregiving work such as being a personal support worker needs to be valued and paid more for the high level of responsibility that comes with it. The wages for my support workers who provide care during the day for my two children so that I can work has not increased in 8 years despite the increased cost of living and inflation. It makes it difficult to retain staff or find experienced people who are willing to work for low wages.

Caregiving is everyone’s concern. Even if you aren’t in the caregiving role, it is likely you may be in need of caregiver support at some point in your lifetime.

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  1. Frederick Johnson says:

    We have much the same issues of care for those on the spectrum and care for carers, here in
    Barbados. Except we don’t have the social care programs. At all. Persons who care for family members, my son in my case, work full time past retirement to get able to afford living. I know of others here in similar positions. Two carers are better of course, but it’s not always possible. We’re about to start a program here called Basic Life Skills learning centre, for young adults on the spectrum, teaching and showing them how to live and support themselves at home in the community and how to let them socialist as well. As soon as they leave whatever school they can attend, the dissappear from the educational radar, and stay at home for years. Many can be patiently taught life skills in a carefully crafted environment. Nobody else does this here, or in the UK so far as I’ve investigated. The weight is taken from their primary care givers, preventing them from burning out and feeling overwhelmed by a 24/7 caring and teaching routine. We care for our children and exhaust ourselves to death in the long run, giving ourselves little respite, holidays from care duties, and simply time for ourselves.

    • Frederick, thank you for taking the time to write and share the experience of carers in Barbados. If you have a website for the new Life Skills program, I would love to add it to my Global Resources section. I think your program is going to take some of the responsibility off of the carers. Please keep in touch and if there is some way I can help you, please let me know. I have done a lot of writing around the topic of Life Skills.

  2. Lynn says:

    Thank you for yet another excellent article Maureen. As part of the sandwich generation, I was exhausted and burned out from working full time, providing care for my son and my elderly mother even though I had help from some excellent PSWs. I definitely needed more support and appreciate the links that you provided in your article. It is never too early to start planning!

    • Thank you, Lynn! PSWs still don’t take all of the stress and worry away. My two adult children will need care for the rest of their lives and my mom is about to turn 90. I still work full time and often think to myself, “How sustainable is all of this that I do every day?” I have to start doing more planning as well. Whatever I learn, I will share with all of you.

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