Guidance and Resources for Navigating Stroke Aftercare: Where and How to Find Support?

December 29, 2023 - By endureandthrive

Recovering after a stroke may be a lengthy and complex process that varies greatly from person to person. If you have suffered a stroke, this can cause considerable changes in your daily routines and emotional well-being. However, you may learn to adapt to change and navigate the long-term effects of stroke with confidence and as much independence as possible with the proper support and long-term care.

What to Expect in the Weeks and Months Following Stoke

Surviving the stroke may mean the end of the lifestyle you’ve known. You were an active, self-sufficient person before the stroke. You had a sharp memory, drove a car, loved being outside, and were an avid gardener. However, because the stroke affected your left side, causing weakness in your right arm and leg, you are now unable to perform most of these activities. You’ve also noticed that you’re repeating yourself in conversations, forgetting where you left things, and finding it challenging to focus for long periods.

You might feel grateful to be alive in the first weeks of recovery. However, these unwelcome and unexpected changes after a stroke may at the same time leave you feeling deeply frustrated and anxious. The struggle to walk independently or remember a friend’s name can cause you to feel deeply sad, overwhelmed, and exhausted. Your relationships with family and friends might change, causing you to feel guilty about your dependency. You may worry about being a burden to your family and feel anxious about the possibility of another stroke.

But you are not alone. According to the World Stroke Organization, over 15 million individuals worldwide suffer from stroke each year, with almost a quarter of them being under the age of 65. One-third of all stroke survivors are permanently impaired. Also, many stroke survivors may experience a range of physical and cognitive changes, as well as a mix of emotions, as part of their recovery.

Navigating Challenges After Stroke

While every stroke survivor might have different needs, in the first weeks of your post-stroke recovery, you might need assistance with:

Getting around
Communicating with others
Managing your medications
Managing medical appointments
Preparing and eating food
Getting dressed
Managing your emotions

Caregiving from a family member or a professional may be required, depending on your needs and the level of assistance necessary. You may also require home modifications to prevent injury and maintain as much independence as possible. These may include making the spaces in your home more easily accessible, such as having no-step entries in your rooms, updating your bathroom (building a walk-in tub big enough to include a seat), or installing rails and grab bars to give stability and safety.

Support for Long-Term Effects after Stroke

Knowing how and where to get help in the weeks after a stroke can significantly impact your recovery process. So, here is a guide to finding the right mix of support and resources to assist you on your recovery journey.

1. Healthcare Providers

Your after-stroke treatment will likely require a multidisciplinary medical approach. You might need the support of several teams of medical professionals, such as:

rehabilitation specialists
occupational therapists
physical therapists
rehabilitation nurses
speech and language therapists
mental health professionals

You may also require regular check-ups and monitoring by a neurologist and primary care physician.

2. Home Health Care Services

Whether you need help with some activities of daily living (ADLs) or round-the-clock assistance, receiving health care at home can help you feel more connected and supported, improve your quality of life, and allow you to live as independently as possible.

Home health care is medical treatment provided to patients in their homes for an illness or injury, and it may include rehabilitation nursing, physical and occupational therapy, and speech therapy. The home health care’s main purpose is to assist you in dealing with your condition.

However, to qualify for home health care services, you usually have to meet specific criteria, such as being considered homebound and having a doctor verify that you are homebound (cannot leave your house without assistance due to your condition).

In addition, home health care services may involve non-medical care, such as assistance with everyday activities (eating, dressing, bathing, or transportation).

3. Mental Health Support

Life after a stroke can be difficult to adjust to. You may find it challenging to adapt to the losses and changes that may follow your stroke, so managing your mood can become very stressful for you as well as for family members or caregivers.

The most common mental health issues for stroke survivors are anxiety and depression. You may always feel tired, have difficulty sleeping, controlling your impulses, and concentrating, feel irritable and overwhelmed, lose interest in things you used to enjoy, or feel worried and tense most of the time.

Professional therapists or counselors who specialize in chronic disease or recovery can help with emotional and psychological issues that arise after a stroke. You might want to consider cognitive behavioral therapy (CBT), which has proven to be an effective treatment for depression, anxiety, and other emotional problems.

The presence of a strong support network that includes family and friends, religious or spiritual groups, or local community groups may be of great help to you during the process of recovery.

5. Stroke Support Organizations and Groups

International and national stroke support organizations (SSOs) like the American Stroke Association, Stroke Association, or World Stroke Organization advocate and act on behalf of people affected by stroke, help improve services for those affected, provide support and resources, and more.

Additionally, stroke survivor and caregiver groups provide emotional support, shared experiences, and practical advice to stroke survivors and their caregivers. They can help you realize that you are not alone in your experience, which might relieve some of your emotional burden. You can find them through national stroke organizations, hospitals, and rehabilitation centers.

To use these resources effectively:

Don’t hesitate to ask for help when needed.
Stay connected and informed by engaging with your social support network for emotional and practical support and educating yourself about stroke recovery and available support.
Prioritize self-care and your emotional well-being, and don’t hesitate to seek professional mental help if you struggle with anxiety and depression.

With the right support and resources, you will learn new ways to perform daily tasks and become more independent. Over time, you will begin to adapt, hopefully turning your experience into a source of increased resilience and strength.

References

https://www.stroke.org/en/about-stroke

https://www.stroke.org/en/help-and-support

https://www.world-stroke.org/

https://www.cdc.gov/stroke/communications_kit.htm