Collective Caregiving: When Sharing is Truly Caring

Most of us have experienced the ups and downs that come with group activities, whether it was at work, back in school, or at our local sports club. Well-organized groups are amazing to be a part of. They allow you to work efficiently together, make you feel like you belong and can be a great bonding opportunity.

But then there are the groups that just… don’t work. [Cue scary, dystopian music]. You know, the train wreck, absolutely dysfunctional groups that struggle with communication, have daily clashes and arguments, and bring about a severely uneven workload (where you have to pick up the slack)?

We’re not suggesting your caregiver squad is like the latter (if it is, definitely keep on reading), but, we’re also guessing not everything is peachy (if so, you should also keep reading).

Why is shared caregiving so hard?

Providing care for a loved one with a life-limiting illness is emotionally intense, mentally challenging, and physically demanding. Often, it’s not a task for one person to shoulder alone. Shared caregiving – where multiple family members and friends contribute to the care of a loved one – can lighten the load, distribute the emotional stress, and ultimately improve the quality of care provided. Sounds great, right?

Well, we wish it was that easy. We’re sure some people out there just walked straight into shared caregiving and immediately found a recipe for success. We’ve just never met them.

Like in those group projects back in school, if you want teamwork to work well, you need to make deliberate effort to make sure everything runs smoothly. But how should you and your team of fellow caregivers start collaborating?

We’ll get to that. But first, let’s take a look at some of the challenges caregivers face, when trying to ‘share the care’.

The emotional and mental toll is real

• Struggling with acceptance: Learning to accept the diagnosis or the reality of the illness can take some time.
• Emotional sensitivity: Heightened emotions can lead to disagreements or conflicts.
• Caregiver burnout: The exhausting nature of caregiving can take a physical, emotional, and mental toll, resulting in severe stress and even burnout.
• Limited privacy: Caregivers often have limited personal space or time, leading to feelings of intrusion and a struggle to find a balance between personal needs and caregiving duties.
• Balancing other commitments: Caregivers usually have other commitments, which may involve work, family life, focusing on their own health, and maintaining relationships.
• Family dynamics: Existing family issues tend to come to surface or worsen under the stress of caregiving.

There’s a lack of good collaboration

• No oversight of responsibilities: Missing a clear overview of what needs to be done, by whom, and when.
• Communication break-downs: Poor communication can lead to misunderstanding and uncoordinated care efforts.
• Unequal task distribution: Often, some caregivers may feel they bear a disproportionate burden, which can lead to resentment.
• Lack of coordination: Without proper organisation, tasks are not delegated and there’s no clear allocation of responsibilities.

There’s limited support and resources

• Lack of professional support or resources: Limited access to healthcare professionals or lack of information about the disease can make caregiving more difficult and stressful.
• Inadequate preparation or training: Some caregivers may lack the necessary skills or knowledge to provide certain aspects of care, leading to anxiety and potential conflicts.
• Different personal commitments or need for flexibility: Each caregiver’s other responsibilities or personal constraints can make it hard to establish a consistent caregiving schedule.
• Conflicting caregiving styles: Different people have different approaches to care, which can cause more friction.
• Lack of mutual respect or understanding: Different perspectives, generational gaps, or diverse cultural backgrounds may result in misunderstandings or disrespect.

Now, if you’re being really honest with yourself, how many of these challenges can you relate you?

If you said zero: Hi. We’ve been looking for you! The natural-born caregiver who walked into shared caregiving and found a recipe for success. Show us your ways. ❤️

But if you – like most of us – nodded heavily as you read the challenges, and thought we transcribed your life, don’t worry. We’ve collected all the best tips from those who’ve been where you are, to help you embrace shared caregiving.

Unlocking the power of collective caregiving

Teamwork is hard, but not – I’ll do it by myself – hard. To set you up for effective communication and collaboration, it’s important to put some guardrails in place to help you along the way:

• Define roles for everyone in the care team
• Establish good communication
• Make a plan that works for everyone
• Leverage technology
• Make time for yourself and for each other
• Seek outside help

Define roles for everyone in the care team

Understand all the different roles that caregiving demands, and figure out which role each person is comfortable to take on.

• Share your preferences: Play into each other’s strengths, preferences, and boundaries, and split responsibilities accordingly.
• Define clear roles: To prevent confusion, make sure everyone knows their specific tasks and responsibilities.
• Allow for flexibility: Life is unpredictable, so roles and responsibilities might need to change over time. Be open to this evolution.

“I initially did most of the daily care, but when I really started to struggle with my own health, I had to ask our friend to step in and help alongside home carers.”

Establish good communication

Create a safe space for communication, where you can all express your feelings, concerns and needs.

• Agree on rules for communication: Get on the same page when it comes to how, when and why you want to communicate. Find the right tools to make communicating easier, be that caregiving apps, WhatsApp, or good old-fashioned phone calls.
• Open communication: Encourage everyone on the team to express their feelings, concerns, and ideas openly. Try to have open, non-judgmental conversations about caregiving challenges and feelings.
• Really listen and try to understand: Practice active listening, try to understand each other’s point of views, use “I” statements, and try to not put blame on others.
• Be deliberate in your communication: Set aside time for important conversations. This might include creating a care plan, having a chat about caregiver boundaries, or talking about preferences for the end-of-life.
• Take notes: It’s an overwhelming time, so try not to rely on memory as often as you used to. Distributing a few notes of what was agreed on in meetings are a good way of ensuring that everyone is on the same page.
• Keep all information in one place: Informed caregivers are better communicators. Set up a shared space of all important information and documents for everyone to access. This can include contact details of healthcare providers, important documents or treatment plans.
• Seek guidance: If there are disagreements or any complex issues to discuss, a counsellor, social worker or the palliative care team can help facilitate the conversation.

Make a plan that works for everyone

Create an overview of all the nitty gritty tasks that your caregiving responsibilities will entail, and how much effort each task requires. You can all contribute to this list, but if there’s an obvious ‘primary caregiver’ in your team, they might want to give it a go first. You know, too many chefs in the kitchen and all that. Alternatively, if one of you is more organised by nature they might be a good choice.

• Outline daily and weekly tasks: List all caregiving tasks, then divide and conquer according to each caregiver’s abilities and availability. Agree on what you should do yourselves, and where you might need help.
• Have a ‘care team lead’: Planning, organizing and delegating is a task in itself – quite a crucial one. While it’s not always fun to be told what to do, it’s probably most efficient to assign one person to take on the role as team lead.
• Use a shared calendar: Make sure everyone knows when and what they’re responsible for.
• Have regular catch-ups: Use these to update the plan as needed, discuss any issues, and appreciate each other’s efforts.
• Expect change: Be prepared to adjust your approach, with the changing nature of the care requirements.

“With us, my husband’s brother was the designated driver to all doctor’s appointments, his close friend worked remotely and could chip in with daily care and last minute stuff, and my sister took care of research as she was based in a different city.”

Leverage technology

With defined roles, and a plan already in place, you can set up a shared online calendar for all the caregivers. There are plenty of useful web and mobile apps that can help you all be more informed, coordinated and on top of everything. Just remember to always respect the privacy of the person you’re caring for when sharing information digitally.

• Stay organized: Set up a shared calendar or make use of the productivity tool Notion.
• Caregiver support: A tool like CaringBridge (website and mobile app) can be helpful for sharing updates with friends and family. Pal (mobile app) can help the whole care team better manage symptoms, coordinate care and learn from a library of tailormade resources for caregivers like yourself.
• Medication reminders: Medisafe helps keep track of medications and sends reminders.
• Memory keeping: Use apps like Moments by After Cloud or My House of Memories to help collect and keep memories in a safe space.

Make time for yourself and for each other

As cliché as it may sound: it’s a marathon, not a sprint. Taking time out to care for yourself and each other is a must, so you can be the best caregivers for your loved one.

• Take time out: Caregiving is serious, but don’t forget to enjoy time together outside of that role. What are some things you all enjoyed doing before you became caregivers? Do that.
• Prioritize self-care: Make sure each caregiver takes time for themselves to recharge and de-stress. Communicate your own needs for self-care clearly and the boundaries you’re setting for yourself, whether that is a daily morning run, a trip to your favorite cafe, or a weekend away.
• Offer emotional support: Be there for each other, and lean on each other for support. Only you can truly understand what you’re all going through.

Seek outside help

It may feel like it at times, but you don’t have to do it all on your own. Look into your network, ask for support, and make use of professional services that are available to you.

• Look into your network: Other family members and friends, neighbors, and colleagues might be able to help. They might be stepping back trying to give you space, and waiting to be asked to step in.
• Consider respite care: Respite care can be offered both in and outside of the home, and allows caregivers to take short breaks while ensuring their loved one is cared for.
• Use counselling services: Professional counselling can help you better manage the emotional stress of caregiving.
• Integrate professional caregivers: In some situations, hiring a professional caregiver can not only provide a relief, but it can also bring in specialized skills to better provide for your loved one. Depending on your location, some home care or nursing care services might be reimbursable or covered by your health insurer.

Et voila! Party of one no longer.

Of course, now that you’re done with all the talking, planning and delegation, the hard work actually starts. So when the going gets tough, remind each other of who you’re doing this for. It won’t make caregiving any easier easier, but it will make it more meaningful and motivating.

You’ll get through this. Together in care.