Sleep and Dementia Risk: What You Should Know (2025 Update)

If you’re skimping on sleep thinking “I’ll sleep when I’m dead,” science has bad news: you might get there faster — with dementia.

Your brain doesn’t just “rest” when you sleep. It performs critical maintenance that literally clears out the toxic waste linked to Alzheimer’s and other dementias. Skimp on that process for years, and the risk piles up — dramatically.

New 2025 research is louder than ever: poor sleep isn’t just making you tired and cranky today. It’s quietly increasing your chances of losing your memories tomorrow.

Here’s exactly what the latest studies say, why it happens, and — most importantly — what you can do right now to protect your brain.

The Shocking Numbers No One Wants to Hear

• People with long-term sleep troubles are 40% more likely to develop dementia or cognitive impairment (Mayo Clinic, September 2025).
• Sleeping 6 hours or less per night in your 50s and 60s increases dementia risk by 30% or more (multiple long-term studies, including NIH data).
• Chronic insomnia is linked to faster cognitive decline and higher dementia rates (Neurology, September 2025).
• Sleep apnea? You’re looking at a 5-fold higher risk of having Alzheimer’s pathology (meta-analyses + 2025 data).
• Even excessive sleep (9+ hours) is a red flag — it’s linked to up to 2x higher risk of Alzheimer’s in some studies.

The relationship is U-shaped: too little OR too much sleep both spike your risk.

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The U-Shaped Association between Sleep Duration, All-Cause …

How Sleep Actually Cleans Your Brain (And Why It Matters)

While you’re in deep sleep, your brain activates the glymphatic system — basically a sewage network that flushes out beta-amyloid and tau proteins. Those are the exact toxic gunk that forms plaques and tangles in Alzheimer’s brains.

Miss out on deep sleep? Those proteins build up.

A groundbreaking October 2025 Cambridge study found impaired glymphatic function directly linked to dementia progression.

Yale research from April 2025 showed reduced deep and REM sleep are early biological markers for Alzheimer’s — sometimes appearing decades before symptoms.

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Frontiers | The newly discovered glymphatic system: the missing …

Sleep Apnea: The Silent Brain Killer Most People Ignore

If you snore loudly, wake up gasping, or feel exhausted despite “sleeping” 8 hours — get checked for sleep apnea. Seriously.

People with untreated sleep apnea have:

• 5x higher rates of Alzheimer’s pathology
• Smaller brain volumes in memory regions
• Dramatically higher tau protein levels

The oxygen drops during apnea events starve your brain and trigger inflammation. Over years, this accelerates dementia.

The good news? Treating it with CPAP can significantly lower your risk — some studies show it may even slow cognitive decline.

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Why Sleep Apnea Sufferers Need CPAP Devices

It’s Not Just Duration — Sleep Quality Is Everything

You can sleep 8 hours and still be screwed if it’s fragmented, shallow crap.

2025 research from The Lancet showed poor sleep quality ages your brain faster — literally making it look years older on MRI scans.

Key factors that destroy sleep quality:

• Blue light exposure at night
• Alcohol (yes, even that glass of wine ruins REM)
• Inconsistent sleep schedule
• Stress/anxiety
• Poor sleep environment (too hot, too bright, bad mattress)

→ Real talk: I used to be a terrible sleeper. Then I started using evidence-based sleep supplements on the road and at home. Game-changer. Read exactly what finally fixed my sleep here

The Midlife Window: What You Do in Your 40s-60s Matters Most

The strongest links between poor sleep and dementia show up when bad sleep habits start in midlife.

A massive UK study following people for 25+ years found short sleep in your 50s and 60s was the biggest predictor — not sleep in your 70s.

Translation: If you’re under 65 and running on 5-6 hours “because you’re busy,” you’re playing Russian roulette with your future brain.

Actionable Steps to Protect Your Brain Starting Tonight

1. Aim for 7-8 hours. No more, no less. Set a non-negotiable bedtime.
2. Get tested for sleep apnea if you snore or wake up tired.
3. Create a bulletproof sleep routine:
   • No screens 60-90 minutes before bed
   • Bedroom <67°F (19°C)
   • Blackout curtains + white/pink noise
   • Magnesium glycinate or L-theanine 30-60 min before bed (what finally worked for me)
4. Exercise daily — but not within 3 hours of bedtime
5. Limit alcohol — it murders deep sleep
6. Get morning sunlight to set your circadian rhythm
7. If you can’t sleep, get out of bed. Don’t lie there stressing.

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Senior Elderly Man Sleeping Peacefully White Stock Photo …

The Bottom Line

Sleep isn’t a luxury. It’s the most powerful anti-dementia tool we have — and it’s free.

Every year you spend chronically underslept (or oversleeping as a symptom of poor health) is quietly increasing your risk.

But the reverse is also true: every year you prioritize excellent sleep is actively protecting your brain.

2025 research removed all doubt. The question is: what are you going to do about it?

Start tonight. Your future self — the one who still remembers their grandkids’ names — is begging you.

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→ Struggling with sleep on the road or at home? This is what finally fixed mine → Want more science-backed health truths?→ Share this with someone who “functions fine on 5 hours” — they need to see this.

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Over 94% Of Dementia Patients Don’t Recognize Their Cognitive Deficits Because Of This

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“Mom, you forgot to take your medication again.”

“No, I didn’t. I never forget my pills.”

“But the bottle is still full from last week…”

“You’re wrong. My memory is fine. There’s nothing wrong with me.”

If you’ve had conversations like this with a loved one experiencing dementia, you’re not imagining things—and neither are they, in a way. Over 94% of dementia patients genuinely don’t recognize their cognitive decline, and it’s not because they’re in denial. It’s because of a neurological condition called anosognosia.

This isn’t stubbornness. It’s not pride. And it’s definitely not a conscious choice to ignore reality. Anosognosia is a symptom caused by the same brain damage that causes dementia itself, and understanding it can transform how you care for your loved one.

What Is Anosognosia? (And Why It’s Not Denial)

Anosognosia is a neurological condition that prevents a person from recognizing their own impairment. The word comes from Greek: a (without) + nosos (disease) + gnosis (knowledge)—literally meaning “without knowledge of disease.”

Here’s the crucial distinction: Unlike denial, which is psychological, anosognosia results from changes in the brain that affect self-awareness. People with anosognosia truly believe nothing is wrong, even when symptoms are obvious to everyone else.

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The Shocking Statistics

Research reveals the staggering prevalence of anosognosia in dementia:

✓ 81% of patients with Alzheimer’s dementia have some form of anosognosia
✓ 94.5% of early-onset dementia cases involve lack of awareness
✓ 60% of patients with mild cognitive impairment (MCI) already show signs of impaired awareness
✓ 50-90% of patients with schizophrenia and 40% with bipolar disorder also experience anosognosia

This isn’t a rare complication—it’s the norm.

The Science: What’s Happening in the Brain?

Understanding the neuroscience helps explain why your loved one isn’t “being difficult”—their brain literally cannot process the information about their deficits.

Brain Regions Affected

Anosognosia typically accompanies damage to specific brain structures, particularly the right parietal lobe, temporoparietal region, thalamus, or basal ganglia. Recent research has identified additional areas involved:

Prefrontal Cortex: Responsible for working memory, self-monitoring, and organization

Insular Cortex: Associated with emotional processing, error awareness, and the salience network

Default Mode Network: Includes connectivity between prefrontal, parietal, and cingulate cortices

Posterior Cingulate Cortex (PCC): Particularly vulnerable in Alzheimer’s disease

When these areas are damaged, the brain’s “monitoring unit” that mediates conscious awareness of deficits stops functioning properly.

Photo by Pawel Czerwinski on Unsplash

The Vicious Circle Mechanism

Here’s where it gets really concerning: Anosognosia actually accelerates cognitive decline by preventing patients from being aware of their deficits and implementing strategies to cope with their difficulties, thus fostering a vicious circle of cognitive decline.

Think about it: If you don’t know you have memory problems, you won’t:

• Write things down
• Use medication reminders
• Ask for help
• Seek treatment early
• Follow safety precautions

This creates a downward spiral where lack of awareness worsens the very problems the person doesn’t know they have. For more on cognitive health strategies, check out our guide on B vitamins for healthy brain function.

How Anosognosia Manifests: From Mild to Severe

Anosognosia isn’t an all-or-nothing phenomenon. It exists on a spectrum, and levels and areas of self-awareness vary from person to person. A senior’s lack of insight can be selective or complete.

The Four Levels of Awareness (Anosognosia Rating Scale)

Researchers use a rating scale to measure the level of unawareness:

Level 1: Patients easily admit memory loss
Level 2: Patients admit, sometimes inconsistently, to a small amount of memory loss
Level 3: Patients are not aware of any impairment in memory
Level 4: Patients angrily insist that no memory problem exists

Photo by Christian Bowen on Unsplash

Domain-Specific Unawareness

Anosognosia may occur in multiple domains, such as the illness in general, specific cognitive deficits, affective changes, or activities of daily living.

A person might:

• Recognize they have trouble finding words but deny having memory problems
• Acknowledge memory issues but refuse to believe they can’t drive safely
• Accept cognitive decline but be unaware of behavioral changes
• Admit some difficulties but be completely unaware of others

Rationalization and Excuses

Dementia patients may rationalize or explain away these situations with a general excuse about age-related forgetfulness or fatigue.

Common rationalizations include:

• “I’m just tired today”
• “Everyone forgets things at my age”
• “You moved my keys—that’s why I can’t find them”
• “The instructions were confusing, not me”
• “I chose not to do that” (when they actually couldn’t)

The Timeline: When Does Anosognosia Develop?

Research shows that amyloid-β burden has been associated with a progressive decline in self-awareness, reaching anosognosia about three years before the dementia stage.

Pre-Clinical Stage

In the very early stages, some people actually have heightened awareness of subtle changes, which can cause anxiety and depression.

Mild Cognitive Impairment (MCI)

60% of MCI patients already show some form of anosognosia. This is often when families first notice the disconnect between what they observe and what their loved one reports.

Alzheimer’s Dementia

81% of patients with Alzheimer’s dementia have anosognosia. The condition typically worsens as the disease progresses.

Predictive Value

Critically, individuals with amnestic MCI with impaired awareness of cognitive decline were 2.86 times more likely to progress to AD within a 2-year time frame than those with intact awareness.

In other words, lack of awareness isn’t just a symptom—it’s a warning sign of faster progression.

Photo by Andrew Rivera on Unsplash

The Devastating Impact on Caregivers

If you’re caring for someone with anosognosia, you already know this isn’t just challenging—it’s emotionally exhausting.

Why It’s So Hard

“For dementia caregivers, anosognosia can sometimes be more frustrating to deal with than a loved one’s actual lapses in memory. You witness their abilities changing before your eyes. But how can you convince them that they’re no longer able to safely drive, cook, or handle their finances when they don’t even understand they’re ill?”

Common caregiver challenges:

Safety battles: They insist on driving when it’s clearly unsafe
Treatment resistance: “I don’t need medication—there’s nothing wrong with me”
Medication non-compliance: They forget pills because they don’t believe they need them
Financial risk: They make poor decisions but refuse help
Wandering: They leave home alone, not recognizing the danger
Emotional toll: Constant arguments and accusations of lying or controlling

Photo by Tim Mossholder on Unsplash

The Research on Caregiver Burden

Research shows that anosognosia significantly increases caregiver burden, for example by increasing physical symptoms or social isolation. Caregivers for those with both dementia and anosognosia are at greater risk of stress-related health issues compared to those caring for people who retain awareness of their condition.

You’re not just managing memory problems—you’re managing someone who doesn’t believe they have memory problems. That fundamental disconnect makes everything exponentially harder.

For strategies on managing caregiver stress, explore our article on 5 nagging thoughts that keep holding us back in life.

How to Recognize Anosognosia in Your Loved One

Red Flag Behaviors

Watch for these signs that your loved one may have anosognosia:

Consistent denial of observable problems (not occasional disagreement)
Anger or aggression when cognitive issues are mentioned
Blaming others for their mistakes (“You hid my keys”)
Refusing needed help despite clear inability to manage tasks
Lack of concern about dangerous situations
Insisting on independence in clearly unsafe activities
Rejecting medical treatment they obviously need

The Patient-Caregiver Discrepancy

Diagnosis usually requires clinical assessments to evaluate brain function, observations from caregivers, and brain imaging (MRI or CT scans) that can detect brain changes associated with dementia and assess areas linked to self-awareness deficits.

One common assessment method: comparing what the patient says about their abilities with what caregivers observe. Large discrepancies indicate anosognosia.

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Evidence-Based Strategies for Managing Anosognosia

There’s no cure for anosognosia, but there are proven strategies to make life safer and less stressful for everyone involved.

The LEAP Method: Your Communication Game-Changer

The LEAP method can help you better communicate with your loved one. It stands for listen, empathize, agree, and partner.

L – Listen: Hear their perspective without immediately correcting them
E – Empathize: Acknowledge their feelings and frustrations
A – Agree: Find common ground, even if it’s small
P – Partner: Work together toward solutions

Instead of: “You can’t drive anymore. You’re not safe.”
Try: “I know you feel confident driving. I’m worried about the roads being busier these days. How about we drive together today?”

Redirection and Distraction Techniques

Instead of directly confronting the person about their lack of awareness, caregivers can use redirection and distraction techniques to avoid potential conflict.

Examples:

• Change the subject when they insist nothing is wrong
• Redirect to a pleasant activity or memory
• Use humor to deflect rather than argue
• Focus on what they CAN do, not what they can’t

Photo by Sven Mieke on Unsplash

Create a Safe Environment Without Power Struggles

Since a person may not fully recognize their cognitive challenges, it’s important to focus on safety. Gentle home safety measures like reassessing driving abilities, fall-proofing the home, securing firearms, and using medication reminders can help reduce risks and support well-being.

Safety strategies that don’t require acknowledgment of deficits:

Medication management: Pre-fill pill organizers, set alarms, or arrange for delivery
Driving alternatives: Offer to be their chauffeur, arrange rides, or blame car troubles
Financial protection: Set up automatic bill pay, limited-access accounts
Home safety: Install grab bars, remove tripping hazards, improve lighting
Monitoring: Use discreet tracking devices if wandering is a concern
Social engagement: Arrange activities that provide structure and supervision

What NOT to Do

Don’t argue about their deficits: You won’t win, and it damages trust
Don’t use logic to convince them: Their brain can’t process this information
Don’t shame or embarrass them: This only creates defensiveness
Don’t take away independence abruptly: Make gradual changes when possible
Don’t isolate yourself: You need support too

When Cognitive Therapy Can Help

Where anosognosia persists, cognitive therapy can help patients better understand and compensate for their deficit.

While you can’t “fix” the lack of awareness, a skilled therapist can:

• Help develop compensation strategies
• Work on memory aids and routines
• Address anxiety or depression related to subtle awareness
• Support the transition to accepting more help

Important distinction: Anosognosia differs from denial, a psychological defense mechanism that involves avoiding or rejecting information that provokes stress or pain. With denial, the patient may acknowledge a deficit but minimize its consequences and avoid treatments geared to remedy the deficits.

Therapy works better for denial than for anosognosia, but it can still provide valuable support.

Photo by Natalia Blauth on Unsplash

Building Your Support Network

Caregivers may want to join support groups or seek guidance from health care professionals experienced in dementia care. A strong support network can provide emotional relief, practical tips and resources to better manage the challenges of caring for someone with anosognosia.

Where to Find Help

Alzheimer’s Association: Free 24/7 helpline at 1-800-272-3900 and support resources
National Institute on Aging: Evidence-based information on dementia care
Local support groups: Connect with others who understand what you’re going through
Geriatric care managers: Professional guidance for complex situations
Respite care services: Give yourself necessary breaks

Why Support Matters

Caring for someone with anosognosia is uniquely challenging because:

• You’re managing their reality, not just their symptoms
• You often feel gaslighted by their insistence nothing is wrong
• Others may not understand why “you can’t just explain it to them”
• The emotional burden is compounded by lack of acknowledgment

You need people who get it. Don’t try to do this alone.

The Prognosis: What to Expect

If the cause is a stroke, dementia, or a mass lesion, the prognosis in most cases is poor. If the cause is related to a mental health disorder, the condition leads to difficulty in medication compliance. The overall quality of life is poor.

Progressive Nature

Anosognosia in dementia typically worsens as the disease progresses. The person who initially admits to “small memory lapses” may eventually become angry when any deficits are mentioned.

Impact on Treatment

In some cases, anosognosia may influence treatment decisions, especially when considering disease-modifying therapies (DMTs) for Alzheimer’s disease. Diminished self-awareness can affect how reliably a person reports side effects or follows medical guidance.

The Importance of Early Detection

These findings demonstrating an increase in AD pathophysiology indicate that awareness assessments are a reasonable method to clinically screen individuals for interventions targeting AD pathophysiology in MCI.

Early identification of anosognosia can:

• Predict faster progression to dementia
• Guide treatment planning
• Help families prepare for future needs
• Inform safety interventions before crises occur

For information on cognitive health supplements, read our guide on focus supplements for productivity.

Photo by Getty Images on Unsplash

Real Caregiver Perspectives

“My mother has anosognosia—something I didn’t even know existed until I read an article about it a couple of years ago. Just knowing that she lacks the capability to recognize her deficits does make it easier to work with her sometimes because I can strategize with that in mind.”

“If we are to increase understanding and reduce uncertainty experienced by people with dementia, we must fully sink ourselves into dealing with and truly understanding what is experienced and take a more thoughtful approach to their condition.”

The Power of Understanding

Knowledge changes everything. When you understand that anosognosia is:

• Neurological, not psychological
• Caused by brain damage, not character flaws
• Beyond their control
• Not personal attacks on you

You can shift from frustration to compassion, from arguing to adapting, from feeling gaslighted to understanding the reality of brain disease.

Frequently Asked Questions

Is anosognosia the same as denial?

No. Denial is a psychological defense mechanism where someone consciously or subconsciously refuses to accept a diagnosis or health condition. Anosognosia is caused by physical changes or damage in the brain, which impair self-awareness and make it impossible for a person to recognize their condition.

Can anosognosia be treated?

There is no specific treatment for anosognosia, but vestibular stimulation seems to improve this condition temporarily. Management focuses on working around the lack of awareness rather than curing it.

Will my loved one ever acknowledge their dementia?

Possibly, but it’s unpredictable. Some people have moments of clarity or insight, while others never fully recognize their condition. The progression varies by individual.

How do I keep them safe if they won’t admit they need help?

Use strategies that don’t require acknowledgment: automatic systems, environmental modifications, creative reasoning (“The doctor wants me to drive you”), and gentle persistence.

Is anosognosia a sign of worse dementia?

Yes. Research shows that individuals with MCI who have impaired awareness are 2.86 times more likely to progress to dementia within two years. It’s both a symptom and a predictor of progression.

Should I keep trying to make them understand?

No. Repeated attempts to convince someone with anosognosia that they have deficits usually backfires, creating anxiety, anger, and damaged trust. Acceptance and adaptation are more effective.

The Path Forward: Hope and Realistic Expectations

Living with or caring for someone with anosognosia is undeniably hard. There’s no sugar-coating the challenges of managing safety, dignity, and wellbeing for someone who doesn’t believe they need help.

But understanding changes everything.

When you know that your loved one’s brain literally cannot process information about their deficits, you can:

✓ Stop taking their denials personally
✓ Work with their reality instead of against it
✓ Find creative solutions that preserve dignity
✓ Focus your energy on what actually helps
✓ Seek appropriate support for yourself

The Bottom Line

Over 94% of dementia patients don’t recognize their cognitive deficits because of anosognosia—a neurological condition caused by the same brain damage that causes their dementia. It’s not denial. It’s not stubbornness. It’s brain disease.

Your role isn’t to make them see what their damaged brain cannot see. Your role is to keep them safe, maintain their quality of life, and preserve your relationship—all while getting the support YOU need to sustain this challenging journey.

You’re doing harder work than most people will ever understand. Please don’t do it alone.

Additional Resources

Learn more about dementia care:

• Alzheimer’s Association – Anosognosia Information
• National Institute on Aging – Alzheimer’s Care
• NCBI – Anosognosia Research

Related articles on cognitive health:

• B Vitamins for Brain Function
• 3 Spices That Can Prevent Cognitive Decline

National Resources:

• Alzheimer’s Association 24/7 Helpline: 1-800-272-3900
• Eldercare Locator: 1-800-677-1116
• National Institute on Aging Information Center: 1-800-222-2225

Have you experienced anosognosia with a loved one? Share your story in the comments below. Your experience might be exactly what another struggling caregiver needs to hear today.

Disclaimer: This article is for informational purposes only and does not constitute medical advice. Always consult with qualified healthcare professionals for diagnosis and treatment of dementia and related conditions.

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Updated April 2024

Caring for kids and parents at the same time

As I watched my brother wheel her out to my car, temporarily parked in the airport arrivals pickup line, I instantly felt shocked. 

This wasn’t the mother who’d gone off to Arizona a mere seven months ago. She was frail; her clothes hung off her the way my grown-up clothes cascade off my eight-year-old. Her hair, which she’d long colored a deep shade of red and had styled the same way since I was small, was a ratty, gray mess. Her nails, which she’d always kept perfectly rounded and manicured, were unpolished and ragged.

Even though I knew she’d declined, seeing her this way was jarring. And heartbreaking. 

If she had her wits about her, I knew she’d be mortified.

I first noticed the spottiness of her memory back in 2019 when she was diagnosed with a blood cancer disease called Myelodysplastic Syndrome (MDS). She’d had labs drawn and they’d come back wonky – her white blood cell count was too low – and we needed to make an appointment with a hematologist. 

During that time, I’d been hyper-focused on all the responsibilities and joys that come along with raising 3 small children (twins and a singleton). Though she lived alone and I often worried about that – my dad died when I was just 27 – I assumed my mom had everything regarding her health and medical care under control. But in 2019 when I went into her medical chart to reach out to her primary care physician for a referral, I couldn’t find one. When I asked her who she saw, she couldn’t remember; then she named a doctor I knew she hadn’t seen since I was a child. 

I decided to take control, the same way I do with my own children’s care. 

It was that day I became a member of the Sandwich Generation.

I remember vividly the day I locked myself into one of the private rooms at my coworking space and made phone calls to all the doctors my mother had seen over the last 5 years trying to determine which one was her primary. I utilized the wall-hanging whiteboard to draw a diagram – my mom in the middle with several outward spokes pointing to every doctor and medical facility she’d visited, similar to what you might see on a detective show.

It took me all day to sort it out. I promised her that either I or one of my four older siblings would accompany her to every doctor’s appointment going forward. This was to offer her support, yes, but also because I was beginning to realize she needed our ears and minds – she needed us to hear and record the important information each doctor was going to share. 

That evening, I was emotionally exhausted. I sat with my husband on our bed, and the tears began rolling until I was blinded by them. 

I was completely overwhelmed. 

Caregiving for my elderly mother and young children felt completely untenable.

How was I going to manage this – my mother’s impending needs and care – as well as my own children’s? My kids, then 7, 4, and 4, needed their mom. They were my top priority, but now… now my mom needed me too. 

Desperately. 

And I felt physically sick. How was I going to do this? 

“One foot in front of the other,” offered my husband as he held me close. “That’s all you can do. And you’re not alone in this. I’m here to support you and our family. Always. We can do this.” 

I’d always been grateful for him, but in that moment, my gratitude was tenfold. We always joked that together we were The Force, but on that night, I knew it was true. 

The very next week, my brother and I brought my mom to her first appointment with her new oncologist. 

“This type of blood cancer turns into acute myeloid leukemia,” said Dr. Warlick. “If we do nothing, we’re probably looking at three years of life left. Maybe less.” 

Our hearts sank. Three years? How was that even possible? She was so young – and I wasn’t ready to be parentless.

“And if we do something?” I asked. 

“Well, we can do an aggressive type of chemo,” she went on. “Your mom will have to come in a couple of times a week for her treatment, and we’ll follow her blood work closely to see if there are any changes. If she were younger and healthy, we’d look at a bone marrow transplant, but considering her age and the fact she’s been a lifelong smoker, she’s just not a candidate for that.” 

We chose to do the chemo and, after several months, she miraculously went into remission. Even her oncologist was surprised. “I don’t know how long this will last,” she said, “This type of cancer is terminal. It will come back. But until then, go enjoy life.”

But something happened while my siblings and I were taking my mom to all her labs and doctor’s appointments; we noticed something equally as life-threatening and terrifying as her MDS. She was often forgetful and confused. And not just a little bit, but very much so. 

Since my dad passed away in 2007, she’d been more reclusive than she ever was; she was also becoming exceptionally paranoid and wary of those around her. She spent so much time alone. 

I began to notice that she’d make up stories, which, to this day, I’m not sure if she knew were false or if she thought they were truly reality. But this was different. These new stories she was telling were far more outlandish and bizarre.

We also began to notice how she’d ask the same questions multiple times within a short conversation. She started calling me in the evenings confused, unsure what medications she was supposed to take and when, and what her plans were for the following day. And I was shocked by the mess I’d see when I’d visit her at home because she had always been a consummate neat freak.

Being disorganized, messy, and – gasp! – dirty was simply NOT in her DNA. I think perhaps this tipped me off more than anything. Yet I didn’t know how to bring it up to her. I knew if I accused her of being forgetful, she’d become defensive. But then, one day, the opportunity arose. 

We were in my car on our way home from one of her medical appointments when she said, “Marissa, I’m noticing that my mind isn’t working as well as it used to. I asked someone – a doctor friend of mine – at the golf club if I should be worried, and he said it’s normal, that all old people forget things now and then.” 

But I took this opportunity to discuss the subject without her becoming offended or angry at me for doing so. 

“Mom, it’s interesting you say that. Actually – I’ve been noticing it a little bit too. Hey – would you mind if I made an appointment for you with a ‘memory doctor’? Someone who can help us determine if this is normal aging, or maybe if it’s something more?” 

It was out of character for her, but since her cancer diagnosis, she’d been far more amenable to these types of requests from me. 

“Okay,” she agreed. “That sounds like a good idea.” 

When we first met her memory doctor, who was a geriatrician specializing in Alzheimer’s/Dementia, I was exceptionally nervous. I didn’t want to hear the news that I knew deep in my gut was true. She gave my mom a series of cognitive tests – one that was verbal, one in which she had to draw pictures and complete a written exam – followed by drawing blood for pertinent labs (the MRI came a few weeks later). 

At the end of the appointment, Dr. Smith explained to us as gently as she could that she thought my mom was in the early stages of Dementia. 

This was a gut punch. Even though I’d already known it was true – it didn’t lessen the blow of those words. Your mom is in the early stages of Dementia.

I kept a brave face and held my voice steady. I knew I needed to be strong for my mom. But on that drive home, I was a mess. Rambling on and on about things that didn’t matter, just trying to avoid the topic at hand – the one we both felt like the weight of 12 boulders. 

Dementia. 

I tried to hold it together that evening at home. I didn’t want to burden my children with my pain and panic – or let on how scared I was that perhaps one day this terrifying fate would befall me. To cope, I tried my best to focus my energy on them – playing games, drawing, reading books – but in the moments of silence and stillness, the tears pricked my eyes. 

Over the next several weeks, we completed the necessary tasks one must do when a parent or family member is diagnosed with dementia. We filled out the important paperwork – POA (power of attorney), advanced directives, and so on – and tried our best to plan for an unpredictable future. For now, she was OK living alone, driving, and enjoying her day-to-day activities, but I knew it was only a matter of time. 

I’m a type-A planner who likes to be in control, but there was no planning for or controlling this. And without the ability to plan and check things off a to-do list, my anxiety spiraled. 

As the months went on, my mom’s cancer remained in remission… but, as it does, her dementia worsened. We faced the hard truth – the truth that she didn’t want to accept. Driving was now unsafe – she’d been getting lost far more often – and spending the days on her own was equally as hazardous. We realized she needed a higher level of care.

My siblings and I could no longer be her sole caregivers.

She accepted this, which surprised me, but she refused to let her helper move in with her because she so deeply valued her privacy and space. We went along with this, even though I knew it was the wrong choice. But she was becoming unsteady on her feet and the clutter in her home was growing out of control and posed a fall hazard for her. Not to mention, a pack-a-day smoker, I constantly feared she’d burn the house down. 

My endless worry impacted my parenting. My brain was constantly churning with fears, thoughts, and tasks about my mom and my kids. I kept an ongoing to-do list with three columns: Kids, Mom, and Work. I always felt like I was dropping the ball somewhere: not able to make it to someone’s play at school; not able to take my mom to an important appointment; not able to complete a deadline for work; no energy left to connect with my husband, and so on, and so forth. I was breaking; pouring everything, all the time, from an empty cup. 

The empty cup well known to those in the sandwich generation.

Last April, while my mom was in Arizona for the winter, everything changed in an instant. 

It was an evening after her caregiver had left for the day. She was outside, likely having a cigarette, when she walked down toward the end of her driveway. She tripped on the driveway’s lip, fell hard to the ground… and broke her hip. 

Miraculously, a neighbor spotted her and ran to her side. The neighbor grabbed her cell phone, found my brother’s contact information, and called him to tell him what had happened. He called her caregiver, who called 911 when he arrived. At the hospital, she was admitted and prepped for surgery. 

I’ve often heard that a hip break for the elderly can be the kiss of death. My mom herself used to tell me this when I was small as she stressed the importance of drinking milk to strengthen my bones, but I didn’t realize just how severely she would decline after this incident. 

Between her immobility, the change to her environment and routine, the surgery, new medications, and the inability to smoke, my mom’s dementia increased tenfold. It was like she aged 10 years within one week. 

From the hospital, she was moved into a rehab facility to continue physical therapy and strengthen her hip – this caused her to decline even further. It was another change; another shift in routine, another unfamiliar location. 

My siblings and I knew we had to make a decision quickly. She was no longer safe to live alone with only daytime help. Either we were going to hire her 24/7 care, which is hard to find and quite expensive, or we had to move her into a memory care facility. 

With little time to figure it out, we frantically began researching and touring facilities. It was scary, stressful, and sad… but ultimately, memory care was the right thing for her. 

Yet, I could not shake the heavy guilt I felt at doing this. “She would hate this,” I kept saying to my family. “I know she would rather die than move into one of these facilities.” 

We all agreed – but honestly – we didn’t know what else to do. 

Those days were some of the hardest of my life. I was managing her care from afar, speaking to her physical therapists, physicians, and caregivers multiple times a day, touring assisted living homes, packing up her necessary items for her impending move, filling out all the paperwork required to move her into a facility, all while fielding angry calls from her about strangers holding her against her will and stealing her cigarettes. All of this while trying to parent my kids and keep myself from physically, mentally, and emotionally drowning. 

On one particularly rough May morning, I’d gotten to my daughter’s school just in time for her grade’s orchestra performance. I was so grateful for the respite, to sit there in the comfort of the plush auditorium chair next to friends, and do nothing other than revel in the sounds of these talented 4th grade performers. 

When it was over, after I’d congratulated my sweetheart and hugged her and my friends goodbye, I hopped on a Zoom call with my siblings from the car. We were discussing the details of my mom’s move – who would do what and when. We were butting up against a deadline; she was returning from Arizona in a few days, and we had to have everything ready to go. 

The plan was to have her room at the memory care facility completely ready and to move her in straight from picking her up at the airport. We weren’t going to tell her it was a memory care, but rather a rehab facility she’d live at until her hip improved. I hated every part of this entire situation – lying to her, moving her into memory care, everything. I felt like I was betraying her on the deepest level, and it completely broke my heart. 

All of a sudden, likely between the constant stress, lack of sleep, and total overwhelm, the emotional and physical magnitude of what we were discussing became too much to bear. I began crying hysterically. I could not stop. My patient siblings waited for me to calm down and breathe. Unlike me, their kids were older – they were empty nesters – and didn’t have the pressures of also caring for three little people at home. 

In addition, I was my mom’s only biological child – her “flesh and blood” as she often called me. She was their stepmom. Which, by the way, didn’t mean she loved them any differently or less. She raised them like they were her own, and they all cared for each other deeply. I just, I don’t know, felt this immense pain and guilt that I – not them, but I – was letting her down… letting my dad down, too.  

It was my second eldest brother and his wife who’d agreed to fly down to Arizona and bring her home. This was no easy feat – one I’ll be indebted to them for doing for the rest of my life. 

As I watched my brother, beads of sweat dripping down his forehead after the long, arduous day of traveling with someone who cannot physically travel or cognitively remember where she is or where she is going at any given moment, hoist her into the front seat when I picked them up at the airport, I realized how far gone she was. 

In that instant, my heart shattered into a million fragments. 

She was no longer the same mother who raised me. She was small, disheveled, confused, and broken. I realized our roles had reversed. I was the caregiver now, and she was one in need of tenderness and protection. I wasn’t sure how, but I was going to have to figure out how to manage this sandwich – caring for my children, while also caring for her. Four needy people. I wasn’t quite sure yet where care of myself, my marriage, or any of the other facets of my life, would fit in, but I knew it all had to be part of this hefty multilayered sandwich. 

And as I drove her to her new home, the memory care facility, I played her a Spotify mix I’d created for her when she was first diagnosed with dementia. It was a myriad of her favorite songs, stemming from her childhood to the present – from the Mills Brothers and Andrews Sisters to Billy Joel’s and Rihanna’s greatest hits. She’d always loved music, and I’d read that along with scents, music can help patients with dementia feel calm and spark memories. 

I saw her clapping her hand against her lap to the beat. She had a soft smile on her face as she bopped her head gently back and forth. I had a quick flashback to sitting in the passenger seat while she drove, windows down, the two of us belting out the lyrics to whatever our favorite song at that moment happened to be. 

She may not have been the same mother, but I took solace in knowing that some things would never change.

……….  

Fast forward a bit, last January we moved my mom out of that facility, about 8 months after moving her in. It simply wasn’t the right fit, and she wasn’t being cared for in the way we’d hooped. We searched for a new place and found a lovely home with fewer residents and more of a community feel. The transition went much smoother than I thought it would, and it’s clear we made the right decision.

Though her dementia is worsening, she is thriving. She’s socializing much more, enjoys the kind staff, is eating well, and generally seems happy. It’s the best-case scenario in an otherwise difficult situation. 

As for me, I’m doing my best to take it day by day, and learning how to better take care of myself, my family, and my mom while not constantly burning the candle at both ends. I don’t have this completely figured out – it’s a definite work-in-progress – but for others also wedged in the middle of this impossible generational sandwich, here’s what is helping me… perhaps it can help you too.

• Release the guilt. You’re doing the very best you can. Know that. When it comes to dementia, my mother doesn’t remember things from one moment to the next. So the only person who feels awful when I can’t visit as often as I want to is me. She’s just happy when I show up, for however long I’m able to be there. I was killing myself trying to get there several times a week and each weekend, but with young kids, my work, my marriage, and my own needs, it became emotionally and physically overwhelming.
• Prioritize. Yes, You can do many things, but you cannot do everything, and certainly not all at the same time. I decided that my kids and family had to come first. So on any given day, if both needed me, I made the choice to attend to my kids first, and then my mom. While this isn’t always possible, it’s what I strive for.
• Ask for help. During the tougher periods of moving my mom back home and into her memory care facility, and again moving her into her second memory care facility, I had to ask for help. My husband stepped up and helped a ton, and we had to enlist our babysitter too. If you have someone you can lean on during those tough moments – a neighbor, friend, partner, caregiver, family member – do it.
• Reserve the right to change your mind. If the type of care you initially choose for your loved one isn’t working — whether it’s living with you, in a memory care facility, a nursing home or an assisted living community, etc. — just know you can change course when you see fit. When we realized the place we’d moved my mom into wasn’t right for her, my siblings and I decided to research more places and find a better fit. Though the idea of moving her again seemed completely overwhelming, it went far better than we expected, and the outcome was positive. She’s much happier in her new home, and we are too.
• Self-care. It felt impossible to squeeze in time for myself, and often still does, but the things that helped me the most were going to therapy, journaling, being physically active each day, attempting to eat as healthy as possible (not an easy feat for me!), and sneaking in time with friends.

For those of you in a similar boat, you’re not alone. It isn’t easy. It’s stressful, emotional, guilt-inducing, and so much more. But please give yourself as much grace, love, and compassion as possible. 

I’m sending all my hugs and love to you as we navigate life in the sandwich generation. While it’s been a difficult road, I’m also incredibly grateful that I can be here for her in her time of need, just like she’s always been for me.  

Marissa Bader is now a writer and author of children’s books, including The Only Me, Stella’s Brave Voice and Petunia the Perfectionist, which debuts in August 2024. Connect with her on Instagram.

Stella’s Brave Voice: Twin sisters, Stella and Paige are different in a lot of ways – especially when it comes to how much they like to talk. Stella’s always been okay with being the quiet one . . . until now. Suddenly, Stella has something to say. But can she find a way to make her own voice heard over Paige’s? And will learning to use her own brave voice hurt Paige’s feelings—and their special relationship?

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