Caring for a stroke survivor
Supporting your loved one after stroke
If your loved one has had a stroke, you’re probably wondering how you can best support them. Stroke survivors face significant challenges, and as their caregiver, you have the ability to be a strong support system. One of the most important ways to help is by understanding how to provide emotional support during their recovery.
What is a care partner?
At Kandu Health, we define a care partner as an unpaid friend or family member sharing care for someone living with the effects of a stroke. The care partner takes a role in managing the stroke survivorโs health and recovery.
We use the term care partner instead of caregiver because we recognize that you and your survivor act as a team during recovery. Stroke survivors may identify one or more care partners and those care partners may change over time based on bandwidth and the survivorsโ needs. Kandu is committed to maximizing each survivor’s agency over both their identity and health and uses the term ‘care partner’ to reinforce this idea.
Don’t blame the stroke survivor
Each year, an estimated 888,000 people in the U.S. experience a stroke, and this number is expected to rise. Anyone, including people you knowโor even yourselfโcould have a stroke at some point.
Itโs crucial to understand that the stroke survivor did not cause their stroke. Even if someone has engaged in unhealthy behaviors, a stroke can be triggered by numerous other factors. While there are steps like eating healthy, quitting smoking, and taking medication that can lower the risk of a stroke, they don’t guarantee prevention.
Blaming the survivor isnโt helpful. You might feel that they need to change their habits, but real, lasting change must come from within. When people make changes out of fear or pressure, those changes often donโt stick. Trying to force “healthy” choices could cause more harm than good.
Instead, support the survivor by focusing on their values. Rather than warning them theyโll have another stroke if they donโt change, ask whatโs important to them. Focus on what they want to add to their life, not what needs to be taken away.
Allow them to be where they are.
Donโt expect stroke survivors to be constantly inspiring, brave, or happy. Theyโve gone through a traumatic event and need time to grieve. Putting pressure on them to always be uplifting or positive can lead to feelings of inadequacy if they donโt meet those expectations. Stroke survivors donโt need pity, toxic positivity, or unsolicited advice. What they do need is empathy, respect, and dignity.
Even though you may not fully understand what a stroke survivor is going through, you can listen and show empathy. Stroke survivors donโt need to be “fixed”โthey need to be heard.
Try to understand the emotional burden
The mental health impact of a stroke is significant. Depression, which is often chemical and biological, is a common consequence after a stroke, regardless of external factors. Many stroke survivors also struggle with anxiety and post-traumatic stress. Having faced a near-death experience, they often deal with unresolved emotions.
Family members and care partners may also experience stress, anxiety, and even depression as they navigate the changes in caring for a loved one with a disability. This can strain relationships. Stroke survivors and their care partners need understanding as they face these new challenges.
Remove barriers instead of โfixingโ
After a stroke, both survivors and their families often focus on “getting back to where they were.” However, recovery is not about “fixing” the personโitโs about addressing the social and environmental barriers that limit their participation in society. Stroke survivors face challenges such as discrimination, physical barriers, and social isolation, which can cause frustration and feelings of helplessness.
Recovery is personal, and what matters most is quality of life and the ability to participate in activities. Focus on removing barriers that make social participation difficult for your loved one. Include them in decisions, and let them choose their level of involvement.
It can be challenging for survivors to access public spaces or transportation, and they may struggle to find employment. Feeling excluded from activities they previously enjoyed can be painful. Instead of organizing events that might be inaccessible, do what you can to remove barriers and support inclusion.
Respect their autonomy
Itโs natural to want to help a stroke survivor in any way possible, but itโs important to respect their autonomy. Decisions should be made collaboratively, with the survivorโs preferences and goals in mind. While you can offer support and guidance, ultimately the decision should be theirs. Even if their decision-making process is slower than youโre used to, be patient and avoid frustrationโthis will help protect their sense of agency.
Recovery from a stroke isnโt linear, and survivors will have different needs at different stages. Flexibility and ongoing communication are key to providing the right kind of support. By respecting their autonomy, you help foster their sense of dignity and well-being.
In some cases, family therapy or other resources might be necessary to help rebuild relationships and address the emotional challenges that can arise. Stroke survivors face obstacles like mental health struggles, social isolation, and even hurtful actions from loved ones, which can delay recovery. They need to build a network of “safe people” who support their recovery without draining their energy.
How to be a safe person for a stroke survivor
Being a safe person for a stroke survivor means offering more than just medical supportโit involves empathy, understanding, and respect. Hereโs a guide to help you become a safe person for someone in stroke recovery:
Listen, donโt fix
Avoid trying to “fix” the stroke survivor. They donโt need solutions from you, as they have a team of professionals and advocacy support from Kandu to guide their recovery. What they need most is someone to listen to them.
Respond with confidence and calm
When asked for help, offer assurance. A calm presence provides them with a sense of stability.
Offer empathy over advice
Survivors need to feel heard and understood, not given unsolicited advice.
Be reliable
ย Stroke survivors need to trust that youโll be there when you say you will.
Be mindful of your questions
ย Ask questions in a thoughtful and sensitive way, with genuine curiosity and kindness. Avoid questions just to satisfy your curiosity; only ask if it truly serves the survivor’s needs and experience. You are not entitled to someoneโs story just because youโre curious.
Be clear about your support
Itโs okay if you canโt do everythingโeveryone has their own responsibilities. Overextending yourself can lead to resentment. Be honest about your availability, and donโt overcommit.
Be flexible
Stroke survivors often experience post-stroke fatigue and may need to cancel at the last minute. Be understanding about their energy levels and respectful of their time, adjusting yours when possible.
Value them for who they are
ย Let the survivor know you value them as a person. During this time, they need to hear and feel that appreciation.
Understand theyโve had a unique experience
Recognize that their experience is different from anything you might fully understand. Instead of trying to relate, accept their experience with compassion and kindness.
Be patient and let them speak for themselves
Donโt speak for the survivor, rush them, guess their words, or fill in pauses. Give them the time they need to speak, and redirect conversations back to them if others talk to you instead of directly to the survivor.
Maintain genuine connections
Show up authentically in your interactions, and take breaks if you feel stressed or unsure. A safe person feels a genuine connection with the stroke survivor. If you feel frustrated, stressed, or overwhelmed, take time for yourself rather than exposing the survivor to those feelings.
Self-reflect
Regularly ask yourself, โAm I a safe person for the survivor?โ
Not everyone will meet these guidelines perfectly, but striving to be a safe person can greatly support a stroke survivorโs recovery, helping them feel valued, understood, and supported.
Support for stroke survivors and their care partners
Kandu’s stroke recovery services offer comprehensive support for both stroke survivors and their care partners. Our experienced doctors, nurses, and navigators take the time to understand your individual needs, developing personalized recovery plans and providing essential resources to help make recovery a lot smoother.