05: Planning for the long term

Dementia care worsens over time, so caregivers must accept limits, plan ahead, seek support, practice self-care, and know when to get professional help.

Giovanni Brouwer
2 min read Jan 13, 2026

Accepting the Progressive Nature of Dementia 

Hard truth: Your loved one's condition will worsen. Your care burden will increase. You cannot do this alone forever. 

Planning ahead isn't giving up - it's being realistic. 

The Stages of Dementia Care 

Early Stage: Supervision needed 

  • Your role: Helper, reminder, safety monitor 
  • Sustainable: Yes, with boundaries 

Middle Stage: Hands-on care needed 

  • Your role: Full-time caregiver 
  • Sustainable: Only with significant support 

Late Stage: Total care needed 

  • Your role: Cannot be done alone 
  • Sustainable: No - professional help essential 

Where is your loved one now? Where will they be in 6 months? 

When to Consider Facility Care 

Signs it may be time: 

  • Safety concerns you can't manage (wandering, falls, aggression) 
  • Your health is deteriorating 
  • You're isolated from all other relationships 
  • You have suicidal thoughts 
  • You're using alcohol/drugs to cope 
  • You resent your loved one 
  • Medical needs exceed your ability 

Facility care is not failure - it's recognizing limits. 

Do this NOW while you can: 

  • Power of attorney for healthcare and finances 
  • Advance directives / living will 
  • Review insurance (Medicare, Medicaid, long-term care) 
  • Calculate costs of future care options 
  • Consult elder law attorney 

Waiting until crisis makes everything harder and more expensive. 

Creating Your Exit Strategy 

This sounds harsh, but you need a plan for when you can't continue: 

  1. Trigger points: Define what situations mean you need more help 
  2. Next level of care: Research facilities now, not in crisis 
  3. Financial plan: Know how you'll pay for care 
  4. Family agreement: Discuss decisions before emergency 
  5. Your transition plan: What will YOUR life look like after? 

Giving Yourself Permission to Stop 

You may need to hear this: 

  • Placing your loved one in a facility is not abandonment 
  • You can still be involved in their care 
  • You can visit regularly without providing 24/7 care 
  • Your well-being matters 
  • You've done enough 
  • It's okay to choose yourself 

Many caregivers only stop when they physically collapse. Don't wait that long. 

Life After Caregiving 

When caregiving ends (through facility placement or death): 

  • Grief is normal - even relief is normal 
  • Identity crisis is common ("Who am I without this role?") 
  • Give yourself time to recover before major decisions 
  • Seek counseling if needed 
  • Reconnect with yourself and others 

You will have a life after this. Plan for it. 

 

Course Summary 

The Five Key Lessons: 

  1. Recognize burnout before it destroys your health 
  2. Know your limits and accept them without guilt 
  3. Build support systems - you can't do this alone 
  4. Practice daily self-care - small actions prevent collapse 
  5. Plan for the long term - dementia is progressive 

Final Message: 

You are not superhuman. Caregiving for someone with dementia is one of the hardest things a person can do. The most loving thing you can do - for your loved one AND yourself - is to recognize when you need help and accept it. 

Additional Resources 

Crisis Support: 

  • National Suicide Prevention Lifeline: 988 
  • Alzheimer's Association 24/7 Helpline: 800-272-3900 
  • Crisis Text Line: Text HOME to 741741 

Online Communities: 

  • ALZConnected (Alzheimer's Association forum) 
  • r/dementia (Reddit community) 
  • Caregiver Space support groups 

Recommended Reading: 

  • "The 36-Hour Day" by Nancy Mace 
  • "Learning to Speak Alzheimer's" by Joanne Koenig Coste 
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