Caregiver isolation and loneliness - finding mutuality

Caregiver isolation and loneliness - finding mutuality

Caregiver isolation is an experience that can sometimes pull you and the person you’re taking care of apart, rather than closer together.

Let’s face it, caregiver loneliness is a reality.

Family caregiving is not always easy and yet it is a deeply personal and emotional experience for both the person requiring care and the caregiver. Sometimes, you will feel alone. This caregiver isolation is an experience that can sometimes pull you and the person you’re taking care of apart, rather than closer together.

Challenges of caregiver isolation and how to overcome them

In Canada, most of the care provided to our elderly is done by family caregivers. The burden can be heavy and many family caregivers feel that their contributions are undervalued, leading to feelings of caregiver isolation and loneliness.

In this Elizz article we’ll explore some tips on how to get the support you need for your relationships and in your role as a family caregiver.  

Emotional Side of Caregiving:

  • How You React and Respond - Learning that someone close to you is diagnosed with cancer, dementia, or admitted to hospital with a broken hip or a stroke can be devastating. How you react and respond to this news can be important to setting the stage for your caregiving responsibilities.
  • Research and Getting Help - While this may be a time of crisis, it is important to stay calm and learn more about the situation, and talk to your family member about what it means to them. Learn more about the diagnosis and what to expect. While there is plenty of information on the Internet, it is also important to make contact with organizations that offer specific information and support, such as community resource centres, and health charities, such as the Alzheimer Society of Canada.
  • Organize Health Information - Many caregivers become the keeper of health information as a way to reduce fear and anxiety about what to expect so it’s important to organize your health and medical information. Information and knowledge can be powerful. Building support around your caregiving relationship will help you through the ups and downs, giving you the resources to better deal with the feelings of caregiver isolation.

Relationship quality matters:

  • Health Issues Affect Relationships - Not all relationships are created equal. Sometimes we find ourselves in communication patterns that are not helpful. Caregiver loneliness is common even in loving relationships where we can experience the strain of talking about the health changes that are affecting relationships.
  • Be Open to Counselling - Talk to your doctor, nurse, or social worker about counselling to find new ways to communicate. If you are employed, find out if your employer offers Employee Assistance Programs. You can seek individual counselling to help you process your experience. You may also want to do couple or family counselling to talk about how you can deal with caregiver isolation and improve or change your patterns of patient and caregiver communication. You may also want to try support groups such as those offered by community organizations and resources, such as the Alzheimer Society.

Competing priorities and roles:

  • Be Aware of Role Overload - Caregivers often take on the role of primary caregiver with little preparation or ongoing support. As care demands increase, the possibility of experiencing caregiver isolation and loneliness also increases as your caregiving role may come into conflict or compete with your other roles within the family, your circle of friends, and work life. Research shows that when caregivers experience role overload, they can experience strain, loneliness, declining health, and other negative outcomes such as caregiver social isolation and decreased quality of their relationships.
  • Look for and Accept Help - Most care receivers do not want to feel like they are placing a burden on their caregiver. Be open about the time crunch you are experiencing as well as your need for a respite break. Explore who else can help in your circle of support, whether it is family, friends, or outside help.

Knowing when you are NOT the caregiver

  • Respect Your Other Relationships – Although the experience of caregiver isolation and loneliness is real, many caregivers will acknowledge that caregiving can consume their lives. Therefore, it is important to keep in mind that you have other relationships outside of caregiving.

Ask yourself:

  • Does my family member need this care?
  • Do I need/want to be the one who gives care?

You may find yourself caught in this trap, yet sometimes the best option is to step back, allow others to help, and you simply be the spouse, daughter, son, etc.

Mutuality of care – how to paddle your caregiving canoe

Have you ever tried to paddle a canoe with someone else? It is not always easy. Learning to paddle a canoe together takes time and practise. This mutuality is the same as in a caregiving relationship.

You both need to understand where you are going together. There needs to be a give and take — a mutual understanding.

You need to have open communication. You need to have a coordinated effort to work together to move forward to your destination. The person in the rear of the canoe controls the direction of the canoe. The person in the front controls the power. It truly takes teamwork. 

Jim and Alice – caregiving and family relationships

Jim and Alice have been happily married for just over 50 years.  High school sweethearts, they had spent their lives together, experiencing the joys of starting a family and growing even closer over time. 

It was four years after Jim had retired, with Alice approaching her 69th birthday that she suddenly had a stroke.  Jim found himself plunging into uncharted territory in the role of primary caregiver to his wife.

Alice had been a stay at home mom, raising their three children and managing the household, including cooking all the meals. With Alice unable to do all of the things that she had done in the past and Jim feeling the effects of caregiver isolation, Jim confided in the home care case manager that cooking was the most challenging thing about being a caregiver.

After discussing this with Jim further, the case manager was able to find a solution that worked well for both Jim and Alice - she arranged Meals on Wheels service and respite, so Jim could attend a cooking class at the local grocery store.

While apprehensive at first, Jim found a new sense of pride and learned that “this old dog can learn new tricks!”

Jim and Alice found something new to talk about and explore together. Despite the role reversal, Jim was able to overcome his feelings of caregiver isolation and become positive about his role as a caregiver. Jim now sees caring for his wife as a way to give back to her for the many years she cared for their family.




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