Emotional Burden
Introduction: A Silent Struggle
When a mother, father, spouse, or loved one becomes dependent on care at home, it generally begins with subtle unease, even before a disease is identified. Then comes the diagnosis: Alzheimer's, Parkinson's, or a similar neurological disorder. Life is never the same again. Not only the patient, but the whole family faces an intense physical and emotional trial. Most of the time, one experiences these feelings alone, sighing: "Am I the only one going through this? Why is it so hard?" But you are not alone.
This article is designed to explain, through scientific data and heartfelt observations, how family support can be rebuilt in moments when caregiving often turns into a crisis. Even in the most hopeless times, it is possible to find sources of strength.
What Is a Caregiving Crisis? Why Does It Shake the Family?
A caregiving crisis often occurs when the patient's condition changes unexpectedly, their needs increase beyond expectations, or the caregiver's own limits are pushed. A crisis turns not just the patient’s, but the entire family’s daily routines, roles, and emotions upside down.
Studies show that 60% of families caring for individuals with severe neurological illnesses experience stress, burnout, or conflict. This condition, known as the care burden, can weaken solidarity and reveal vulnerabilities.
Why Does Family Support Fall Apart?
Mismatched Expectations: Who will take on which responsibility? How much sacrifice will each person make?
Emotional Challenges: Not sharing challenging emotions like guilt, sadness, anger, or helplessness.
Lack of Communication: Inability to communicate openly, misunderstandings, or unspoken words.
Chronic Fatigue: Feeling burnt out when continuous sleeplessness and physical/medical care responsibilities are not shared.
Social and Economic Factors: Financial difficulties, workload, other responsibilities.
When these problems add up, the crisis experienced together can drive the family apart instead of keeping it together. But it's important to remember: support can be rebuilt.
Rebuilding the Support System in Times of Crisis
1. Facing and Sharing Emotions
It must be accepted: Any caregiver can become exhausted, challenged; it is human to feel anger, anxiety, or sadness. Research shows that when families express their emotions and approach each other with empathy, conflicts decrease.
What Can You Do?
Share your emotions with at least one family member or someone you trust, without suppressing them.
Speak using "I" statements instead of blaming each other: "When I’m very tired, I feel alone."
Even if you are not under the same roof, keep communication alive through messaging or short calls.
2. Structuring Communication
Weekly Check-in Meetings: Organize a short weekly meeting with family members. Give everyone a chance to share their feelings and the strengths/weaknesses they've observed in the care process.
Don’t Delay Conflicts: Discuss hurt feelings before they grow, using gentle and constructive language.
Make Decisions Together: Whenever possible, important care-related decisions should be evaluated together.
In one study, caregivers who maintained regular family communication experienced up to a 30% decrease in symptoms of depression and anxiety.
3. Roles and Responsibilities: Realistic and Flexible Distribution
No one can do everything in long-term care. Concentrating responsibilities unnecessarily on one person erodes relationships. Dividing daily tasks into small pieces and sharing them lightens the load and strengthens solidarity.
If possible, create a "duty schedule". Who will shop, who will check the patient's medication, who will take over for a short care shift?
Encourage contributions from everyone willing, not just the "most suitable" person.
External support (relatives, neighbors, even volunteer organizations) can be arranged. Support requests rarely come without asking.
4. Information and Awareness: Being on the Same Page
It eases misunderstandings and panic if every family member has basic knowledge about the illness, its course, and what to expect. If it is understood that fluctuations are normal in diseases like Alzheimer’s or Parkinson’s, and that emotional and behavioral swings are part of the illness, tolerance increases.
If possible, more than one person should attend doctor's appointments.
Short brochures, online materials from support groups, and reliable resources can be read together.
5. Personal Time and Self-support
Research shows that if one family member creates time for their own needs, even just a few hours a week, feelings of burnout and anger decrease significantly. It’s important not to feel guilty about organizing "me time." This creates not only a better environment for oneself but also for the patient in care.
Try to make time for short walks, a quiet coffee break, or hobbies.
Remind other family members that even the smallest contributions help, and that your right to rest is valuable.
Empathy: Understanding and Not Forgetting Each Other
"Every family's story is different, but the compassion you show each other when facing hardships is the greatest strength that makes the whole process more bearable."
Remember, nobody is perfect. Everyone tries to do their best, and mistakes are inevitable. What matters is striving to understand one another, even in vulnerability.
Professional Approaches and Practices for Caregiving Crises
Sometimes, family resources may fall short in crises. In this case:
Psychological support: Getting counseling together or individually can be very beneficial. Cognitive behavioral therapy, for example, is a recommended method for reducing caregiving stress.
Group therapies: Sharing experiences with others facing similar difficulties reduces isolation.
Social services and community-supported organizations: Learning about access points for home visits, financial or practical support can be important.
Step-by-Step Support Plan
See the situation: Gather all family members to openly discuss current challenges, feelings, and resources.
Distinguish immediate from deferrable needs: In a crisis, prioritize urgent needs (medications, hygiene, safety).
Open communication channels: Use group chats, short message boards, or simple apps to ease communication.
Set small steps: Clarify the minor responsibilities to which everyone can contribute.
Don’t ignore emotions: Plan small breaks and short conversations for everyone.
After Personal Caregiving Crises: Growing Close Again as a Family
Sometimes, crises leave behind deep resentments, worn-out relationships, or even estrangement. However, over time, it is possible to understand each other again, to forgive, and to smile together. Even if illnesses have taken much from your family life, you can still build new bridges of support and love. Support can be rebuilt.
Important Reminders
Don't blame yourself or your family when going through difficult times together.
Every family may have a different solution; bravely try what fits your needs.
Asking for help is not a weakness—it’s sharing responsibility. Don’t hesitate to reach out to volunteers, relatives, or professional support resources.
Even if life does not flow as we are used to, finding strength together in tough times remains the main way to cope with caregiving crises. Every new day can be a fresh start.
Resources
Brodaty, H. & Donkin, M. (2009). Family caregivers of people with dementia. Dialogues in Clinical Neuroscience, 11(2), 217–228.
Schulz, R. & Martire, L. M. (2004). Family caregiving of persons with dementia: Prevalence, health effects, and support strategies. The American Journal of Geriatric Psychiatry, 12(3), 240–249.
Parker, D., Mills, S., & Abbey, J. (2008). Effectiveness of interventions that assist caregivers to support people with dementia living in the community: a systematic review. International Journal of Evidence-Based Healthcare, 6(2), 137-172.
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