National Caregiver Day: The Many Forms of Caregiving

National Caregiver Day on the first Tuesday in April of each year aims to recognize caregivers’ importance in society and to celebrate and thank caregivers for their work amid the challenges involved. Although caregivers are essential to healthcare and enhance the quality of life for those needing care, many difficulties impact their ability to provide this service for others. To learn about what it is like to be a caregiver, Madison Harrison, a former student staff member in the LWWRC, talked to a Personal Support Worker (PSW) and wrote this blog about the challenges and rewards of being a caregiver in a retirement home. We also provide two additional perspectives: unpaid care work required of family members, and the issue of young disabled individuals being placed in nursing homes rather than assisted-living care homes.  

Working as a Personal Support Worker  

Working as a PSW is a rewarding job—you get to know the residents and their lives, make their days better, and help them do the things they cannot do anymore. This can be fulfilling, especially when you know that they appreciate your help. You build a relationship with them through caring for them, which is comforting but has downsides. Because you’re often caring for those at the end of their lives, watching them decline from day to day can be mentally and emotionally draining, especially knowing there is only so much you can do to make the end of their life as comfortable as possible. If residents don’t have family with them, you sometimes feel guilty as their carer that you don’t have the time to provide the companionship that they need—other individuals also need your help.   

Caring for those with cognitive impairments/disabilities can be challenging, as you need to know their needs and personal traits before understanding how to help them. A learning period is required, especially if they don’t have family to provide insights into what they need out of their care.  

If an individual is mentally aware, being in a nursing or retirement home can strongly affect them—they may be unhappy to be there, and therefore keep to themselves. They have difficulty adapting to losing their autonomy and their ability to care for themselves. If they can accept that extra help is needed, they can adapt to the situation better.  

Over the years, homes have also started to notice more younger residents (for example, in their 60s)—they present with different issues and require different levels of care. Their attitudes are often more negative, and they feel the effects of losing their autonomy. The challenge is that you still need to provide that care even if they resist it. It’s important to find ways to build their trust so that you can provide the care that they need.  

The job becomes more complex as more and more individuals need assistance, and as the transition between residents becomes more rapid. A person may pass away one day and then a new person moves in a couple of days later—as their carer, you must be able to get to know them quickly and understand their needs. There is also little time to process your feelings when an individual passes away with whom you have probably built a relationship. You often must move on to the new resident coming in—there are always others who need your help.   

An individual’s family can also impact the caregiver’s ability to provide care. Some families are helpful and give insights into what a resident likes to eat or to watch on TV, their preferred bedtime routine, their condition, etc. On the other hand, overbearing family members may still be dissatisfied even if you find ways of handling care that work for you and the resident. Those with absent family members are negatively affected because they are sad not to have any visitors. And without family members to bring new clothes or toiletries, the residents’ quality of life is significantly degraded. Something as simple as having clean clothes with no stains or rips can boost a person’s mood.   

More staff are needed to provide this care more effectively—this would allow carers to spend more time with each resident and provide them with more companionship, especially for those without visitors. Working together as a team also makes the job easier because there are so many residents; it’s useful to have other nurses and PSWs to help with care. When a new resident moves in, it would be beneficial to have a “huddle” with a family member or previous carer to provide more knowledge on the new resident’s specific situation and needs so you can better understand what is required for you to properly attend to them.   

Caregivers appreciate having a day dedicated to acknowledging the work that caregivers provide. This is an essential job. Without it, more people would be left at home, injuring themselves by accident (e.g., falling), not being adequately taken care of, or dying alone—especially when no family members are willing or able to take on the care themselves. This type of job is not for everybody: it can be stressful, emotional, and physically demanding, but knowing that you are there to help people makes it very rewarding. 

Unpaid Care Work Performed by Families 

Because caregiving is not just limited to paid workers in nursing or retirement homes, other perspectives are also important to consider when discussing the intricacies of providing care. Chapter 2 of Unpaid Work in Nursing Homes: Flexible Boundaries, edited by Pat Armstrong, describes the broad spectrum of unpaid work regularly performed by the families of elderly and disabled people. In Canada, due to the high demand for beds in nursing homes and financial restraints on care, elder and disability care is increasingly taking place in people’s homes. This predicament puts extensive care responsibilities on family members and can cause them to experience severe stress. Family members often wrestle with deciding whether someone should be moved into a nursing home; once they have decided, they have to do the unpaid work involved in obtaining a room in a care home. There are long waiting lists with extensive criteria, and priority is given to those with determined higher needs. Families often must settle for the first bed available regardless of whether that home is their first choice, and they have to accept a bed within 24 hours or else it will go to someone else. 

Caregivers end up taking on physical, mental, social, and financial stress in the event of delayed admission.  These stressors often continue after the relative is placed in a care home, with family members doing unpaid work to ensure proper care is provided. Additionally, family caregivers will sometimes continue to perform tasks such as haircuts, laundry, shaving, or taking their relatives on outings or to appointments. If a relative’s condition worsens, it is often necessary for family members to provide extra help with their care. In Canada, the term “nursing home” has become synonymous with “last resort” simply because of the emotional turmoil caregivers face in deciding to put their loved one in a home and then the uphill battle in securing them a place with consistent care. 

Assisted-Living Care Homes as an Alternative to Nursing Homes for Young Disabled Individuals 

Jen Powley, in her book Making a Home: Assisted Living in the Community for Young Disabled People, provides another perspective on caregiving by sharing how young people with disabilities may be placed in nursing homes, thereby affecting their social, psychological, and emotional needs. Routinely, non-senior disabled adults are placed in both hospital and nursing home care because insufficient alternatives are available for their demographic. These homes and hospitals lack a comforting atmosphere and instead foster a clinical setting which is more suitable for palliative care. In these settings, the level of care is based on an objective measurement of how disabled the individual is, with those with seemingly less urgent needs not being seen in a timely fashion. This method does not improve the livelihood or quality of life for non-palliative residents, as residents believe they must be sicker to receive better care.  

Homes for people with severe physical disabilities are not consistent across Canada; to continue pursuing academic, professional, and interpersonal pursuits outside the rigidity of nursing homes, disabled adults must rely on partners or family, hiring expensive support, or splitting time between various institutions. While advocating for multiple housing options for physically disabled persons, as guaranteed under the UN Convention on the Rights of Persons with Disabilities, Powley was told by a lawyer that the rights outlined in the convention were merely “aspirational” and not subject to enforcement under Canadian law. Many young disabled people are left dreaming of rights while being stifled in a nursing home full of people waiting to pass away comfortably. Instead, Powley was fighting for the creation of assisted-living care homes for disabled people aged 18–49. In these places, young disabled people would receive the physical assistance they need while maintaining control of their autonomy and livelihoods. In assisted-living homes, these people would remain active members of the community rather than being subjected to significant psychological torment in homes geared towards end-of-life care. Powley continued to advocate for the rights of young people with disabilities to live independently until her own death at 45 years old in September 2023, as a result of the complications from advanced multiple sclerosis (see the CBC news article).  

This month it's important to acknowledge the many forms that caregiving can take and the effects it has on everyone involved. Working in a nursing home can be incredibly rewarding as you build relationships and trust with those you care for. However, it can also be an emotional and physical burden as workers deal with staffing issues, sickness and loss, and turbulent transitions. As the need for nursing homes exceeds the resources, many caregivers can be found in the family home, taking charge of their elderly or disabled loved one’s care. This responsibility is not an easy one, nor is it easy to transition to a nursing home after being your loved one’s primary source of care. For disabled people who are not palliative, care is even more difficult to obtain, as being placed in a hospital or nursing home provides stability but not autonomy or quality of life. Use this blog post to learn about and applaud the caregivers in your community and acknowledge all that they do. 

- Written by Vanessa Bonham, Madison Harrison, & Mabel Mechery