Life After Stroke: Understanding and Healing

Imagine waking up one day and finding that your entire life has changed. For many stroke survivors, that’s exactly what happens. During a recent St. Luke’s Stroke Support Group that Dr. Black guest facilitated, survivors shared stories, challenges, and triumphs about life after stroke. With about 20 members in attendance, including both people who had experienced strokes and their caregivers, the conversation was deeply moving. The session highlighted the emotional and practical journey stroke survivors and their families navigate. It shed light on the importance of understanding and healing in life after stroke.

An Identity Shift After a Stroke

One of the biggest changes stroke survivors can face beyond any immediate physical symptoms is a shift in their identity. Strokes can happen suddenly, bringing life to a screeching halt. Many attendees shared how their stroke had dramatically affected their daily lives and careers.

For example, there were a couple of professionals in the room, like a CPA and an engineer, whose work had been a huge part of their identity. Suddenly, they were left feeling lost and unsure of who they were. This loss can lead to feelings of social isolation, depression, and helplessness.

One man, who had been an avid runner before his stroke, shared, “It felt like I lost a part of myself when I could no longer run.” This feeling was echoed by others in the room. There were a lot of nods in agreement. People shared their own stories of loss and the struggle to rebuild their lives after a stroke. A common theme was the sense of health they felt before the stroke, which was abruptly replaced by a new and harsh reality.

Creating A New Life After Stroke

During our discussion, Dr. Black emphasized the importance of developing new aspects of identity after a stroke. This means focusing on activities that bring joy and purpose, even if they have to be modified. For example, one member, who loved painting, found peace in switching from large canvases to smaller, more manageable ones. Another discovered a passion for gardening.

The main point is to find activities that are pleasurable, meaningful, and provide purpose in your day-to-day life. One participant reflected, “Maybe I can’t do my favorite hobby exactly like I did before, but I can change it a little or get some help to keep enjoying it.” This shift in focus helps create new anchor points for a life-after-stroke identity. It allows survivors to move forward rather than stewing in the loss of their past identity.

Practical Tips for Life After Stroke

Modify Hobbies: Adapt your favorite activities to suit your current abilities. Maybe that means switching to lighter materials or using modified equipment. Whatever it takes, find ways to continue enjoying what you love!
Victory Boards: Create a victory board in a central location of your home. A victory board is just a board you can use to display your wins. Fill it with photos, achievements, and positive messages to remind yourself of your progress and motivate you. For example, one member, who was scared of leaving the house, found it helpful to place the victory board by the front door. Seeing photos of their outings – which previously felt impossible – gave them confidence and comfort as they headed out into the world. Encourage family members to contribute to the victory board, celebrating wins and offering support through visible reminders of progress. Family observations can be a valuable addition, as they notice and celebrate the stroke survivor’s recovery milestones.
Define Your “New Mission”: everyone needs a reason to wake up in the morning. After a stroke, it becomes even more important to define your “New Mission” when you may not be able to do your previous activities exactly the same way. For some, their new mission is regaining as much strength and functioning as possible through rehab. For others, their new mission involves connecting with their loved ones and community in a different way – often times through volunteering to give back. As long as your “New Mission” is personally meaningful and motivating, you’re on the right track!

Grieving Your Old Self

Redefining your identity after a stroke often involves a grieving process. It’s completely natural to experience stages of denial, anger, despair, and eventually acceptance. One metaphor that resonated with a lot of members of the group was comparing the stroke’s impact to a stone creating ripples in a pond.

The initial stroke affects the individual, but the ripples extend to family, friends, and their larger community. This ripple effect means that the grieving process is not isolated to the stroke survivor; the whole family often grieves.

Several group members shared their feelings of guilt, not just for their own losses but for the impact the stroke had on their families. For stroke survivors it can often feel like your loss burdens your family. One caregiver shared, “It’s like we’re all grieving together, not just my husband who had the stroke.” Validating the feelings and processing the hard emotions together can help everyone heal.

Cognitive and Emotional Changes After a Stroke

Cognitive changes are another common challenge after a stroke. Many shared their frustration with memory issues and talked about how hard it can be to concentrate. These changes vary from person to person and depend on several factors, such as which part of the brain was affected by the stroke, how big the stroke was, how fast medical attention was received, and the type of rehabilitation afterward.

Simple strategies, including using notebooks or digital reminders, can help manage these changes. One member shared, “I carry around a little notebook to write down appointments and to-dos. It keeps everything in one place and makes it easier to remember things.” It’s also important to have a supportive environment with loved ones who are patient and understanding, which can be challenging for caregivers.

We talked about how caregivers can support their loved ones with cognitive challenges. Simple things like don’t point out repeated information. Instead offer gentle reminders. For instance, instead of saying, “Don’t you remember? I already told you that,” try calmly giving the information again without mentioning the repetition.

Practical Tips for Cognitive Changes After Stroke

Use Simple Systems: Keep a central calendar for appointments and to-do lists, whether digital or physical, to help with memory issues.
Stay Supportive: Avoid highlighting repeated information. Give gentle reminders without frustration.
Seek Professional Help: Talk to healthcare providers about depression or emotional changes. Medication and counseling can help.

Emotional Changes and Seeking Help

It’s important to talk about the emotional changes that come with life after a stroke. Approximately 1/3 of stroke survivors develop some form of depression. This isn’t just a psychological reaction to the loss of identity and ability but also a physical response to changes in brain chemistry caused by the stroke.

During our discussion, Dr. Black encouraged members to talk to their doctors if they were experiencing feelings of sadness, despair, or hopelessness. Even though depression is common after a stroke, it still warrants treatment. Counseling can be help, too. Finding a counselor with stroke-specific experience is going to give the best results.