“In the marathon that is caregiving, the difference between exhaustion and endurance isn’t willpower, it’s the strength of the support network we build around us.” Sue Ryan
Are you feeling overwhelmed by the responsibilities of caregiving? Do you find yourself thinking, “I don’t have time to get everything done.” or “I should be able to do this myself.”? You’re not alone, and there’s a better way forward.
We are Sue Ryan and Nancy Treaster. As caregivers for our loved ones with Alzheimer’s and other types of dementia, we’ve learned building a strong personal support network is crucial for sustainable caregiving. Studies show that dementia family caregivers face overwhelming emotional challenges.
According to a 2023 Guardian Life Insurance study:
When it comes to mental well-being, not even a quarter (23%) of caregivers report “good” mental health, and 40% say that their caregiving responsibilities negatively impact their stress levels. Almost half (47%) have experienced increased anxiety, depression, or other mental health issue in the past year — 62% more than non-caregivers.
There is also good news! Studies are showing caregivers with a solid personal support network are experiencing less burnout and higher satisfaction in their caregiving role. We both wish we had built our personal support networks sooner in our caregiving journeys, and we hope you learn from our experience.
Let’s explore five essential tips for creating and maintaining an effective personal caregiving support network.
Tip 1: Assess Your Needs and Make a List
The first step in building your support network is to honestly assess what you need help with. This is also about your needs as a caregiver, not just your loved one’s needs.
No “shoulding” allowed! It’s common to think we ‘should’ be able to do it all. This mindset prevents us from getting the help we need.
Ask yourself:
- Do I have time to get everything done that needs to be done?
- Am I physically strong enough to handle all caregiving tasks?
- Do I find myself losing patience or empathy?
- Is my loved one struggling with activities of daily living that I can’t manage alone?
- Am I trying to provide care I’m not really qualified to provide and may be putting my loved one and/or myself at risk?
If you answered yes to any of these questions, it’s time to ask for help.
People want to help! It’s important to let them know how. Here’s where to begin:
- Make a comprehensive list of tasks you need assistance with
- Estimate how much time each task requires
- Leave space to put one or more names of people who may be able to help next to each item on the list.
This list makes it easier to match needs with potential helpers.
Tip 2: Create a List of Who Can Help and What They Can Do
Think about all the people who have offered to help or who might be willing to help. Consider:
- Immediate family
- Extended family
- Friends
- Neighbors.
Map your list of potential helpers to your list of needs. If multiple people can help with a particular task, list them all — it’s even better when you don’t have to rely on just one person.
People who live far away can still contribute. They might help financially with gift cards for groceries, gas, meal delivery services, scheduling appointments.
Be realistic about what friends and family can do versus when you might need a paid caregiver. Some tasks require professional assistance, and that’s okay. You can find an organization to help (most at no cost to you) by searching online for ‘Senior Care Advisor’ + ‘your area’.
It’s worth saying again. People want to help. Think about how you’ve reached out to people who needed help. Sometimes we have capacity to offer help; sometimes we benefit from others help.
Tip 3: How to Effectively Ask for Help
For many caregivers, this is the most challenging step — it’s also one of the most important. Here are some strategies to make asking for help more comfortable:
- Recognize that some people want to help your care receiver, while others want to help you. Frame your request based on their motivation.
- Remind yourself the people on your list have likely already offered to help or have shown willingness to support you!
- Be specific and direct about what you need and why you need it.
- Adapt your approach based on the person you’re asking:
– Some people (like Nancy) prefer direct, straightforward requests: “You offered to help, and I think you could help with X, Y, and Z. It would take about this much time.”
– Others (like Sue) respond better to a more personal approach: “I would appreciate it so very much if you could help with X. It would mean the world to me.”
If you’re uncomfortable having these conversations, preparing an outline beforehand with the key points you want to cover is helpful. You can also practice this on a family member or close friend to see how it feels and get their input on any modifications.
Tip 4: When People Offer to Help… Say “YES”!
This tip requires a fundamental shift in mindset. When someone offers to help, train yourself to say “yes” immediately — before you have a chance to overthink it or come up with reasons to decline.
Avoid these common traps:
- “It would be easier just to do it myself.”
- “No one can care for my loved one like I can.”
- “I ‘should’ be able to do this myself.”
- “I feel ‘guilty’ — they have their own busy lives.”
When you offer to help others you mean it. Trust that when others offer to help you, they mean it too. Express gratitude liberally — both you and those who help you will feel better about their support.
Tip 5: Maintain Your Support Network and Adjust as Things Change
Your support network will evolve over time. People’s availability may change, and your loved one’s care needs will change. Stay proactive by:
- Encouraging open communication with your support team members
- Being proactive about identifying additional support team members before you need them. Whenever possible, have more people available to help than you need right now, so if something comes up, you already have people you can reach out to.
- Checking in regularly with your helpers to keep them informed and engaged
- Watching for signs of burnout in your helpers — they may experience caregiver fatigue too
- Addressing inflection points — changes — in your loved one’s care needs, and evaluating if there needs to be a change in the expertise of the person providing care.
As your loved one’s condition progresses, the care requirements will change and the right mix of family support and professional care will evolve. For example, Nancy shared how her son had been a regular helper until her husband became incontinent — at which point he was no longer comfortable providing that level of care.
Use these inflection points as opportunities to have honest conversations with your helpers about their comfort levels. It might be time to look into paid caregivers for certain tasks or explore resources like memory care day centers or adult day programs.
Just Start
Caregiving is a team activity, not a solo sport. The sooner you build your personal support network, the better equipped you’ll be for the marathon of caregiving. By following these five tips, you create your sustainable care plan that benefits both you and your loved one.
Here’s a helpful reminder in case you’re still tempted to to do everything yourself. When someone offers to help, say “yes” — you might just hear our voices in your head encouraging you to do so!
Have you built a personal support network for your caregiving journey? What strategies worked best for you? Share your experiences in the comments below or on our Facebook or Instagram pages.
Have you learned valuable lessons that help you and/or your care receiver sleep better?
Connect with us and share your tips:
We’re all on this journey together.
