The First Steps After Diagnosis

When a loved one suffers a stroke or is diagnosed with hemiparesis or a brainstem cavernoma, the world of family members falls apart. Suddenly life is turned upside down and many questions arise: How do we move forward? What can I do? How can I help?

As a caregiver, you become an important part of the treatment and rehabilitation team. Your support, understanding, and care can be crucial for the healing process. At the same time, you must not forget to take care of yourself as well.

Immediate Steps in the Acute Phase

  • Stay calm: Your composure is transmitted to the patient
  • Observe symptoms: Note changes for the doctors
  • Ask questions: Have everything explained in detail
  • Gather information: Diagnosis, prognosis, treatment plan
  • Inform loved ones: Notify family and close friends
  • Handle practicalities: Inform employer, cancel appointments

Emotional Coping with the Situation

The diagnosis of a neurological condition often triggers a rollercoaster of emotions in family members. These reactions are completely normal and part of the processing:

Typical Emotional Phases:

  • Shock and denial: "This can't be true"
  • Anger and despair: "Why us?"
  • Bargaining: "If I do everything right, it will get better"
  • Grief: For the lost "normal" life
  • Acceptance: Learning to accept and live with the new situation

Allow Yourself to Grieve

Grief over the loss of the shared future as you imagined it is justified and important. Don't suppress these feelings, but allow them. Only this way can you emerge strengthened from this difficult time.

Strategies for Emotional Coping:

  • Allow feelings: Crying and anger are okay
  • Professional help: Seek psychological counseling
  • Support groups: Connect with other affected families
  • Relaxation techniques: Meditation, breathing exercises
  • Maintain hobbies: Don't give up your own interests
  • Realistic expectations: Celebrate small progress

The Different Phases of Caregiving

Caring for a family member with neurological problems is divided into various phases, each bringing different challenges:

Phase 1

Acute Phase (0-14 days)

Where: Hospital, intensive care unit

Your role: Emotional support, communication with doctors, organizing daily life at home

Specifics: Uncertainty about prognosis, intensive medical care

Phase 2

Early Rehabilitation (2-8 weeks)

Where: Stroke unit, rehabilitation clinic

Your role: Support therapies, provide motivation, attend family counseling

Specifics: First progress visible, therapy planning

Phase 3

Follow-up Treatment (3-6 months)

Where: Rehabilitation clinic, outpatient therapy

Your role: Transportation to appointments, support home exercises, adapt daily routine

Specifics: Prepare for return home

Phase 4

Long-term Care (from 6 months)

Where: Home, outpatient services

Your role: Primary caregiver, coordinate support services, organize your own respite

Specifics: Develop new normalcy

Communication with the Patient

Communication with a person after a stroke or with hemiparesis can be challenging, especially when speech disorders (aphasia) are present:

Basic Communication Rules:

  • Be patient: Give the patient time to respond
  • Eye level: Sit down if the patient is lying or sitting
  • Normal volume: Don't speak louder unless there are hearing problems
  • Short sentences: Use simple, clear language
  • Yes/no questions: Avoid complex decisions
  • Non-verbal communication: Use facial expressions, gestures, and touch

With Speech Disorders (Aphasia):

  • Don't interrupt: Let speech attempts finish
  • Don't correct: Don't constantly improve
  • Show understanding: "I understand that you're frustrated"
  • Alternative communication: Pictures, gestures, writing
  • Include them: Talk with, not about the patient

Avoid Common Communication Mistakes

  • Don't speak like to a child ("baby talk")
  • Don't talk over the patient's head
  • Don't become impatient or finish sentences
  • Don't automatically assume nothing is understood
  • Don't raise your voice out of frustration

Practical Care and Support

Home care for a person with neurological limitations requires both practical know-how and emotional strength. Here are the key areas:

Personal Care and Hygiene:

  • Showering/bathing: Shower seat, grab bars, non-slip mats
  • Dental care: Electric toothbrush, mouthwash
  • Shaving: Electric razors are safer
  • Hair care: Short, easy-care hairstyles
  • Intimate hygiene: Respectful assistance, washcloths

Mobilization and Transfer:

  • Getting out of bed: Learn proper lifting technique
  • Wheelchair transfer: Get professional guidance
  • Walking practice: Correctly use walking aids
  • Fall prevention: Remove tripping hazards
  • Positioning: Prevent pressure sores

Medication Administration:

  • Medication schedule: Clear documentation
  • Pill organizer: Use weekly dispensers
  • Reminders: Use apps or alarms
  • Side effects: Observe and document
  • Emergency medications: Always keep within reach

Daily Care Checklist

  • Morning routine: Washing, dressing, medications
  • Meals: Adequate fluids, adapted diet
  • Mobilization: Exercises, short walks
  • Afternoon: Therapies, social contacts
  • Evening: Relaxation, evening hygiene
  • Documentation: Note condition, progress

Self-Care for Caregivers

The most important rule in family caregiving is: You can only care well for others if you also care well for yourself! Self-care is not selfish, but necessary.

Physical Health

  • Regular doctor visits
  • Adequate sleep (7-8 hours)
  • Healthy nutrition
  • Exercise and movement
  • Relaxation techniques

Mental Health

  • Professional counseling
  • Support groups
  • Maintain hobbies
  • Meditation/mindfulness
  • Set boundaries

Social Connections

  • Maintain friendships
  • Include family
  • Shared activities
  • Connect with other caregivers
  • Volunteer activities

Time for Yourself

  • Daily breaks
  • Weekly longer pauses
  • Organize vacation coverage
  • Use respite care
  • Utilize day care programs

Support Services and Resources

You don't have to handle everything alone! There are many support services for family caregivers:

Professional Services

  • Home health care services
  • Adult day care centers
  • Respite care facilities
  • 24-hour care services
  • Therapy practices
  • Primary care coordination

Counseling Centers

  • Care coordination services
  • Insurance counseling
  • Social services departments
  • Nonprofit organizations
  • Stroke associations
  • Neurological societies

Self-Help

  • Caregiver support groups
  • Stroke survivor groups
  • Online communities
  • Discussion circles
  • Experience sharing
  • Peer counseling

Training Programs

  • Caregiver education courses
  • Family training programs
  • First aid courses
  • Back safety training
  • Communication workshops
  • Stress management classes

Book Recommendation: "Half-Sides, not Half Human!"

Oliver Brandt's authentic experience report offers not only insights into the patient's perspective, but also valuable guidance for family members. The book shows how important family support is for the healing process.

→ Learn more about the book and Oliver's story

Frequently Asked Questions from Caregivers

How do I recognize if my family member is in pain?

Watch for non-verbal signs: restlessness, grimaces, stiffness, protective postures, changed breathing, or sleeplessness. With speech problems, develop a sign for pain together.

Can I leave the affected person alone?

This depends on their condition. With good recovery, short absences are usually possible. Important: emergency call system, reachable neighbors, safe environment, and clear agreements.

How do I handle mood swings?

Post-stroke depression is common. Take feelings seriously, remain patient, seek professional help, and pay attention to your own limits.

When should I bring in professional help?

When overwhelmed, with health problems of the affected person, when you become ill yourself, or with behavioral issues. Don't hesitate to seek external support!

How can I prevent further strokes?

Through consistent medication compliance, blood pressure and blood sugar monitoring, healthy nutrition, exercise within capabilities, and regular doctor visits.

What do I do if I get sick myself?

Always have an emergency plan: backup caregiver, respite care, neighbors or family. Organize coverage in advance, not just in emergencies.

Conclusion: Your Strength Makes the Difference

As a caregiver for someone with neurological problems, you accomplish extraordinary things. Your love, patience, and care are invaluable and often the most important factor for successful rehabilitation.

Never forget:

  • You are not alone - there is help and support available
  • It's okay to doubt or feel tired sometimes
  • Small progress is great success
  • Your own health is equally important
  • There is life and joy even after a stroke
  • You can be proud of what you accomplish

Thank You for Your Strength and Love

What you accomplish as a family caregiver is invaluable. You enable your loved one to live with dignity despite their condition. Your dedication, patience, and love are the strongest medicine.

You make the difference! Be as caring with yourself as you are with your family member.