“In the “messy middle”, there are things your care receiver is no longer going to be able to manage on their own. What we want for them, in every possible opportunity, is to have them maintain their dignity and independence as much as possible, while asserting control when needed.”
Have you moved beyond the initial steps of your caregiving journey and now find yourself needing to take more control while your loved one still believes they can do most things independently? Are you noticing that simple tasks are becoming increasingly challenging for them, yet they resist your help? You’re not alone! You’ve entered what we call the “messy middle” stage of your caregiving journey.
We are Sue Ryan and Nancy Treaster. As caregivers for our loved ones with Alzheimer’s and other types of dementia, we’ve learned this complex stage of your caregiving journey requires a delicate balance and having a step-by-step roadmap is tremendously helpful. You’re observing your care receiver and asserting control when necessary, while preserving their dignity and independence whenever possible. The “messy middle” requires your patience and continuous adjustments as you learn to stay fully present with your loved one where they are in the moment — not where you wish they were — or want them to be. We lived this and it’s why we created for you the comprehensive, 20-step caregiving journey roadmap guide, Navigating Dementia Caregiving Roadmap: Your Resource Roadmap for Every Stage.
Understanding the Three Stages of Caregiving
Before diving into the seven “messy middle” steps, let’s clarify the three distinct stages of caregiving:
In the Beginning: Right after diagnosis, when your loved one is still mostly — or fully — independent.
The “Messy Middle”: More and more challenges are coming at you due to the diagnosis. You’re starting to assert control because it’s harder for your care receiver to do everything independently, and you’re providing more support because they’re struggling.
We call it “messy” for several reasons. Your loved one may need but not want help. They still know they are losing control. It’s incredibly frustrating for them and makes helping them more difficult.
The “messy middle” has two distinct phases. The first phase, steps 11–14, is when you begin asserting control. The second phase, steps 15–17, is when you realize you need significantly more support.
Later On: You’re now fully responsible for their care and safety, and you are managing all aspects of their care.
First Steps of The “Messy Middle” are 11–14: Begin to Assert Control
Step 11: Focus on Safety
While driving safety was addressed in Step 10, there are four other critical safety areas to prioritize during the “messy middle”:
1. Can They Be Left Home Alone?
Evaluate these essential capabilities to determine if your care receiver can stay home alone safely. Listen to this podcast episode or read this blog post to learn about the deal breakers for living home alone including:
- Medication management: Can they take medications correctly and safely?
- Phone usage: Can they contact someone in an emergency?
- Food and hydration: Can they feed themselves and stay hydrated
- Appliance safety: Can they safely use household appliances?
If your loved one cannot manage any one of these areas, they shouldn’t be left home alone anymore.
2. Medication Management
Understand strategies to safely manage medication by listening to this podcast episode or reading this blog post.
- Start with a comprehensive medication audit.
- Document each medication they’re taking.
- Identify medication purposes, frequency, and how they are supposed to be taken.
- Clearly identify any medications and supplements that are not to be taken together and specialty instructions such as taking them with food.
- Become their advocate by discussing potential adjustments with their doctor. For example, can medications be combined or simplified?
- If their medications are coming from multiple doctors, make sure there is one doctor taking responsibility for knowing about all medications, especially if you’re getting their medications from multiple pharmacies.
- Ensure your medical power of attorney is established. You need legal permission to communicate with healthcare providers and pharmacists.
- Consider using cameras to verify they’re actually taking medications correctly. One family discovered their mother was taking pills correctly our of their containers, but then wiping them off the counter into the trash, thinking they were crumbs.
Home Safety Assessment
Find approaches to the basics of home safety with this podcast episode or this blog post.
Walk through your home as if you were childproofing for a toddler. Key safety measures include:
- File of Life: A crucial resource that provides emergency medical teams with vital information about your loved one, displayed prominently for first responders.
- Physical modifications: Doorknob covers, safety gates, removing trip hazards like rugs, securing knives and dangerous items.
- Appliance adjustments: Modifying stove and oven controls with childproof covers, improving lighting to eliminate shadows — especially on stairways and in doorways.
Wandering Prevention
Wandering takes three main forms. Each requires different strategies. For more detailed information, listen to this podcast episode or read this blog post.
- Outside wandering: The most common concern. It requires door alarms, window and door locks, childproof door knob covers.
- Inside wandering: When your loved one becomes restless and ‘busy’, constantly moving around the house. They are curious. Put away anything that can break, they can trip over, shiny objects, anything on the walls, small items. This is also a good time to look for sharp corners they could hurt themselves on if they fall. A great solution is furniture corner and edge protectors.
- Nighttime wandering: A significant challenge requiring specific management techniques to make sure they can’t leave the bedroom, can easily find the bathroom if they’re still using it, and have enough lighting to see where they are going so they don’t trip.
Understanding and preparing for all three types of wandering helps you respond appropriately when they occur.
Step 12: Prioritize Self-Care
In the “messy middle”, the realities of the importance of self-care become even more important as you’re tempted to sacrifice your own needs because your loved one requires more attention. You might think, “I don’t need to go to the gym every day” or skip other self-care activities. This is precisely when self-care becomes most critical.
Redefine Self-Care for This Stage:
Self-care during caregiving looks different than before. Consider what you can accomplish in one minute, five minutes, or one hour. Focus on emotional self-care that addresses your unique stresses of this stage. Listen to this podcast episode or read this blog post to learn more about these realities of self-care.
Essential Self-Care Strategies:
- Schedule yourself: Put your self-care activities in your calendar just as you would their care needs.
- Seek caregiver relief (respite care): Give yourself permission to step away and have others help. If someone offers to help — say “YES!”
- Practice self-compassion: Give yourself both grace and credit — this is a perfectly imperfect journey.
- Reach out for support: When you feel overwhelmed or frustrated, connect with others who understand. The journey is continuing to become more challenging. Support is essential for both you and your care receiver.
- Things don’t go as planned: This happens more and more in the “messy middle” — which is how it’s earned its name. This is the time to extend yourself grace while recognizing the tremendous effort you’re putting forth.
Step 13: Educate Yourself on Activities of Daily Living (ADLs)
As your loved one’s ability to care for themselves begins to deteriorate, understanding Activities of Daily Living becomes crucial. These abilities tend to unwind together rather than one at a time, and each loss can feel like “a punch in the gut.”
Recognizing the Signs:
You might send your loved one to get dressed for lunch and they return wearing a bathrobe, proud of their accomplishment. You notice they’ve stopped brushing their teeth because they no longer know how to put toothpaste on the brush. During meals, they might eat a few bites and stop — not because they’re full, but because they’ve forgotten how to continue eating and need to be gently restarted.
Understanding these progressions helps you respond with patience and appropriate assistance rather than frustration or confusion.
Key ADL Areas to Understand:
- Incontinence: Learn early preparation strategies before issues begin. There are multiple stages of incontinence throughout their dementia journey. In the early stage, they were beginning to struggle to get to the bathroom. Now, they’re not always able to control their bladder.
- Bathing and Dressing: Recognize when they no longer understand how to select appropriate clothing or complete bathing tasks alone.
- Personal Care: Observe shaving, nail trimming, and other grooming activities for areas of support.
- Eating and Drinking: Prepare to support them when they’ve forgotten how to use utensils or need prompting to continue eating.
We know how complex these can be. We’ve created more detailed resources for you. Here are several to begin with:
Preparing for Incontinence: Listen to this podcast episode or read this blog post.
Bathing and Dressing: Listen to this podcast episode or read this blog post.
Personal Care (e.g. brushing, teeth, trimming hair): Listen to this podcast episode or read this blog post.
Eating and Drinking: Listen to this podcast episode or read this blog post.
Step 14: Create a Care Plan
As you assert more control, you’ll have increasingly more responsibilities to manage. Creating a structured care plan helps organize these duties and prepares for various scenarios. For more detailed information, listen to this podcast episode or read this blog post.
Dual-Focus Planning:
Your emergency plan must address emergencies affecting either person in the caregiving relationship. What happens if you become ill or injured? What support systems are in place if your loved one experiences a medical emergency?
Start With Your Family Emergency Plan:
Your plan should include:
- Daily routines and preferences: Information that would help someone else step in temporarily.
- Emergency contacts: Key people who could provide immediate assistance.
- Care instructions: Specific guidance for anyone providing temporary care.
- Medical information: Current medications, healthcare providers, and important medical history.
Having this plan provides peace of mind and ensures continuity of care regardless of circumstances.
Phase Two: Recognizing You Need More Support (Steps 15–17)
As the “messy middle” progresses, there comes a point when family and friends can no longer provide all the support needed. This is when professional help becomes essential.
Step 15: Leverage Dementia Day Programs
If you haven’t started using dementia day programs yet, now is the time. These programs serve both people in the caregiving relationship:
Benefits for Your Loved One:
- Engaging activities appropriate for their current abilities
- Community interaction with others at similar stages
- Structured, safe environment with trained professionals
- Stimulation and socialization that helps maintain current functioning.
Benefits for You:
- Essential respite time when you’re feeling overwhelmed
- Professional care and supervision during program hours
- Affordable alternative to full-time professional care
- Time to attend to your own needs and responsibilities.
Dementia day programs provide the structured engagement your loved one needs while giving you the break you desperately require. To find options in your area, go to Community Resource Finder and choose Adult Day Centers for your search.
Step 16: Evaluate Professional Help Options
Even if you’re not ready to implement professional care, it’s essential to understand your options and evaluate what’s available in your area.
Community Living Options:
Evaluate residential communities even if you plan to keep your loved one at home. Understanding what’s available allows you to make informed decisions if circumstances change. You want to be making choices from knowledge, not scrambling from a crisis point. To learn more about these options, listen to this podcast episode or read this blog post.
Key considerations include:
- Types of communities available (independent living, assisted living, memory care)
- Costs and payment options — these vary widely between communities
- Services provided and staff qualifications
- Location and visiting policies.
Professional In-Home Care:
If you decide to hire professional caregivers, whether for home care or to supplement community care, consider:
- Assessment of needs: What specific type and frequency of care is required?
- Financial resources: Different types of care have varying costs.
- Family capabilities: What can family members realistically provide versus what requires professional help?
- Hiring approach: Agency-provided care versus privately hired caregivers, each with distinct advantages and challenges.
- Evaluation process: Proper screening and assessment procedures for any caregiver.
For more detailed information about professional in-home care considerations, listen to this podcast episode or read this blog post.
Senior Care Advisors:
Consider working with senior care advisors — professionals who understand local resources, community options, and financial structures. They can answer questions you don’t know to ask and help compare options you might not be aware of.
To find an organization, you can search online: ‘Senior Care Advisor’ + ‘your area’ to find these free services, available in many countries worldwide. Another option is to use the Community Resource Finder sponsored by the Alzheimer’s Association and AARP.
Step 17: Continue Your Education
Advanced education becomes crucial as you navigate the more complex aspects of the messy middle.
Savvy Caregiver Advanced Course:
If you completed the basic Savvy Caregiver course earlier, the advanced Savvy Caregiver course addresses the more challenging aspects of caregiving. This program provides deeper strategies for managing complex behaviors and situations common in the messy middle.
Understanding Delusions:
Delusions are common in many types of dementia and require specific management strategies:
- Frame of mind: Understand that delusions can be frightening for both you and your loved one.
- Validation approach: Meet them where they are emotionally rather than trying to correct their reality.
- Truth-telling strategy: Tell them the truth they need to hear in that moment to provide reassurance and calm.
- Redirection techniques: Learn to distract and shift the environment when delusions occur.
- Documentation: Keep records of delusion episodes, triggers, and effective responses.
- Self-care: Recognize that delusions can be overwhelming for caregivers and seek support.
For more detailed information on navigating delusions, listen to this podcast episode or read this blog post.
Managing Incontinence When It Begins:
Once incontinence actually starts (beyond the preparation phase), additional education becomes necessary. This includes understanding the progression, management techniques, and maintaining dignity throughout the process. For more detailed information on managing incontinence once it begins, listen to this podcast episode or read this blog post.
Moving Through the “Messy Middle”
The “messy middle” requires constant observation, adjustment, and patience. Your role shifts from background support to active management while still preserving your loved one’s dignity wherever possible. This stage demands:
- Present-moment awareness: Meeting your loved one where they are, not where you want them to be.
- Flexible control: Asserting necessary control while maintaining their independence in areas where they’re still capable.
- Self-compassion: Understanding that this stage is inherently challenging and imperfect.
- Professional support: Recognizing when family and friends are no longer sufficient and professional help is needed.
Key Takeaway: The “messy middle” is aptly named because it truly is messy. Your loved one knows something is wrong but can’t fully understand what’s happening. They may resist help, become frustrated, or feel angry about their declining abilities. Your job is to provide the right balance of support and independence while taking excellent care of yourself.
Essential Mantra: You’re not alone on this journey. The “messy middle” is challenging for everyone who experiences it. With the right knowledge, support systems, and professional resources, you can navigate this stage successfully.
The final phase of our roadmap will address “later on” — when you become fully responsible for all aspects of their care. For now, focus on these seven steps that will help you assert appropriate control while finding the additional support you both need.
Have you recognized that you’re in the messy middle of your caregiving journey? What strategies have been most helpful as you balance asserting control with preserving independence? Share your experiences in the comments below or on our Facebook or Instagram pages.
Connect with us and share your tips:
- Website
- This podcast episode
- YouTube
- If you’d like to support our mission please donate HERE
We’re all on this journey together.
