You spend a good portion of your time and energy working to minimize your loved one’s struggles. So when they decline professional help that could increase their independence (and your free time) you’re entitled to feel frustrated.
Whether they refuse much-needed physical or emotional help, or fail to follow through on professional advice, here’s how you, their caregiver, can make things better–for both of you.
Their resistance hurts
Bearing the burden of a loved one’s struggles is difficult, and even moreso when your loved one pushes back against getting help. You may find yourself wondering why your loved one wouldn’t want assistance that might improve their life–for their own sake, or even for yours. You may feel frustrated, disheartened, or even hurt by their resistance. It may feel like you just can’t reach common ground.
In these times, it helps to remember that you and your loved one do have something really important in common: you both want the best for each other and for yourselves.
With that in mind, it’s likely that your loved one has their own reasons for resisting help. Their behavior likely doesn’t come from a personal frustration with you, but from some well-intentioned logic. For instance, they may feel hesitant as to whether the suggested care will actually help. They may feel seen as a burden which you’re just trying to “dump.”
Determining the source of your loved one’s resistance to care may offer keys as to how to effectively reach them.
Start with asking yourself: “Why does my loved one refuse professional help?”
Why does my loved one refuse professional help?
Some common reasons include:
- Financial and insurance concerns
- Stigma against disclosing disability and needing help
- Distrust of the healthcare system or difficulty finding a good provider match
- Communication and accessibility barriers
- A desire for independence
Addressing the reason behind their resistance
Concerns around seeking professional help for physical or emotional issues tend to fall into a few broad categories. Respond logically to each concern at its root, with the following action-oriented tips and resources:
1. Financial and insurance concerns
Look into resources such as Medicaid, Social Security, diagnosis-based assistance programs, your state’s assistive technology program, free clinics, and medication coupons.
Figure out whether your loved one’s insurance covers mental healthcare.
2. Stigma against disclosing disability and needing help
- Reassure your loved one that they are not alone, and that needing care doesn’t invite judgement.
- Find support groups, forums, or chats that your loved one can participate in.
3. Distrust of the healthcare system
In a survey by the National Patient Advocate Foundation, “25% of patients said they had no opportunity to discuss what was important to them with their doctors when they made their treatment plans.”
- Validate these historically founded concerns.
- Discuss confidentiality protections in medical and psychiatric care.
- Review legal rights for disability and accommodations in employment, public services, public transportation, and businesses.
- Search for highly rated care providers and facilities.
4. Communication and accessibility barriers
- Find care providers that meet the needs of your loved one, whether it’s finding a match in cultural values, gender identity or sexual orientation, or language and communication.
- Find providers that can visit your loved one’s home when possible, and find care locations that are accessible for your loved one when not (e.g., How will they handle transport? Does the building structure accommodate their needs?).
- Before appointments, make sure your loved one is ready to answer these four questions for their provider, shared by Lillie Shockney M.A.S on the NPAF website: “What are you hoping for? What is most important to you? What are most worried about? What brings you joy?”
5. A desire for independence
- Make your loved one an active partner in decision-making for their wellbeing.
- Look for care providers that encourage skill-building and deliver accommodations that will increase your loved one’s independence.
- Reassure your loved one that their care regimen will be continually adjusted based on their needs and desires.
All kinds of barriers, real and perceived, may keep your loved one from accessing professional care. Healthcare systems are not always easy to navigate, which can leave your loved one feeling scared, overwhelmed, or simply disinterested in attempting to secure needed assistance. Addressing the root of these feelings can open up paths forward.
Encourage your loved one to engage in their care regimen
If you’ve ever felt so overwhelmed by a situation that you found yourself unable to do anything about it, then you might be able to imagine the stress your loved one may feel. It’s overwhelming to interact with complex medical, social, and legal systems just to meet your basic needs.
The more you can encourage your loved one to engage in their own care, the better it will be for everyone. Engagement with one’s own care often evolves into seeking professional support.
Any steps you can take to make the process easier may encourage their engagement with care. Below are some steps to try. Additionally, we recommend talking with your loved one’s care providers, others in their support system, and peers who face similar difficulties, in order to identify other useful approaches.
- If your loved one takes multiple medications, consider a pill organizer.
- If your loved one forgets to take their medications, try using digital alarms and pairing medication consumption with a daily habit (e.g., when brushing teeth).
- If your loved one doesn’t like their medication, encourage them to talk with their care provider about finding a medication that better suits their needs.
Set up and attend appointments
- Bookmark tabs, add phone numbers as favorites, and have needed information easily accessible for making appointments.
- Make appointments recurring when possible, so they don’t have to set up a new one each time.
- Add events to calendars and send your loved one reminders.
- Explore ways to make attending appointments easier. (Do they have an inconsistent internet connection for virtual meetings? Do they have reliable transport to in-person meetings?)
Make time for at-home care tasks
- If your loved one has physical therapy exercises, psychotherapy “homework,” or other at-home tasks, help them form a habitual routine by scheduling these exercises at the same time each day when possible, either attached to or between other scheduled activities in their day (e.g., after shower, before dinner).
- To the extent possible, join your loved one in doing their activities.
- Work with your loved one to determine an “incentive” that can help keep them engaged (e.g., favorite show, snack, or activity after completing needed exercises).
Reframe the conversation around professional help
Alexandra Drane, Co-Founder and CEO of caregiver organization ARCHANGELS, suggests a helpful re-frame for looking at professional help: “Work toward setting expectations that having a big circle of support is fantastic. Just you is boring!” Instead of approaching this conversation from a place of “getting help,” approach it as an opportunity. Getting professional help in any form is a chance for your loved one to…
- meet a fresh face and get a break from YOU
- get assistance from someone who knows what they’re doing instead of bumbling ol’ YOU
- learn something new from someone trained in a certain task
Ultimately, take care of yourself
Just as you want the best for your loved one, your loved one will want the best for you. Being a caregiver can place a lot of strain on your life, on top of any of your own personal struggles.
It’s important to prioritize your own self-care alongside that of your loved one. Just like your loved one, you deserve to be happy, healthy, and fulfilled.
Be sure to take time to recharge, whatever that may mean for you. Perhaps it means time spent with your loved one on shared interests, or perhaps it means time alone for you to decompress. Calling a friend is another form of rest.
Like many other caregivers, you may benefit from professional counseling or peer support. Whatever it may be, make sure to ask yourself what you need—otherwise, you can’t be in a good position from which give.