Blog # 11 of the series – The Forgotten Crisis
Rita had been awake for more than thirty hours. She found herself standing in the hospital corridor. She was waiting for her husband’s discharge papers. The harsh fluorescent lights buzzed above her. The smell of antiseptic clung to everything. She held on to the counter, trying to stay steady. All night she had been checking the drip. She changed her husband’s damp shirt. She soothed him each time he grew restless. She gently persuaded him to take one more pill.
When the nurse handed over the file, Rita managed a tired smile. She turned to call a taxi, and suddenly the floor shifted under her feet. Her breath became shallow. Tears began rolling down her cheeks without her even realising. A chair appeared beside her; someone guided her into it. Rita kept saying the same sentence almost automatically: “I’m fine. I’m fine.”
But she wasn’t fine. She hadn’t eaten properly in a day. She had barely slept. Later, her smartwatch confirmed what her body had already told her. Her heart rate was high all night. Her sleep was broken into small fragments: 40 minutes here, 20 minutes there.
We have all heard the line during airline safety announcements: “Put on your own oxygen mask before helping others.” Yet caregivers do the opposite. They skip meals. They sacrifice sleep. They give up exercise. They ignore their own health. They squeeze themselves into smaller and smaller spaces of survival. The more they love, the more they give. And the more they give, the more they forget themselves. The tragedy is that this makes caregiving harder, not easier.
Scientists, doctors, and dementia specialists now say something very simple. A carer should take care of themselves. This way, they can give better care. The World Health Organisation created a module called “Caring for Me” in its iSupport programme. It reminds families everywhere that the caregiver’s health is part of the treatment plan.
Caregiving is love. But love can’t run on an empty tank.
Caregivers worldwide experience a phenomenon called compassion fatigue. It is the emotional and physical exhaustion that builds when you are constantly exposed to someone else’s suffering. Confusion or distress adds to this fatigue. Dementia care makes this harder because the journey is long, unpredictable, and full of moments that break your heart quietly. You are watching someone you love slowly change, sometimes disappear, yet still needing you every hour.
Many carers fall into a painful cycle. A behaviour flares up—a fall, agitation, wandering. Stress rises instantly. The body produces adrenaline. Sleep becomes restless, light, and broken. Appetite drops. Irritability increases. Then comes guilt: “I shouldn’t have snapped,” “Why am I feeling frustrated?” “I must try even harder tomorrow.” But the next day, something else triggers stress again. And the loop tightens.
Isolation makes it worse. Invitations stop coming because “people don’t want to bother you.” You decline events because you cannot leave the person alone. Days blend into each other. Quietly, your life becomes much smaller without you noticing.
But none of this is a personal failure. It is simply what happens when one person tries to carry more than any human being should take alone. This is where the science of self-care enters—not the soft version, but the practical, biological, real version.
The Basic needs
Sleep, for instance, is not a treat. It is medicine. Adults still need seven to nine hours, but dementia care often breaks sleep into pieces. Even improving sleep by one hour makes a difference. Some carers use a fixed “lights-down” time, a warm shower, dim lights, or earplugs. Others create a rotation system in which a sibling or neighbour takes one night a week. Some use small motion sensors that alert them gently without fully waking them. There are even digital sleep programmes built specially for dementia carers that teach methods to manage insomnia.
Movement is another powerful tool. You don’t need a gym or a long walk. Ten minutes of brisk walking after lunch can make a difference. A few stretches in the morning help too. Climb stairs instead of taking a lift. Do wall push-ups while waiting for coffee. These tiny bursts of activity lift mood, protect the heart, and improve sleep.
Breathing techniques help too. Slow breathing, box breathing, or the 4-7-8 method can calm the body within minutes. Many caregivers practise these in hospital waiting rooms, in the bathroom, or at midnight when anxiety peaks. Carer training programmes, especially WHO’s iSupport, teach simple ways to manage challenging behaviours, communicate better, and solve problems calmly. When carers feel more skilled, stress levels drop.
But self-care also means changing how we organise our day. In many Indian households, routines are unpredictable. So the best approach is to build tiny habits that fit inside daily life. Some caregivers create a “wind-down” ritual at night. Some prepare a snack kit—nuts, fruit, yogurt—to avoid skipping meals. Many find it helpful to convert tasks into weekly “blocks.” Monday is for medical tasks. Wednesday is for household logistics. Saturday is for sibling coordination.
Setting boundaries is also essential. It can feel uncomfortable at first. This is especially true in a culture where daughters and daughters-in-law are expected to carry the emotional load quietly. But boundaries are not rejection—they are stability.
Sentences like:
“I can visit on Tuesdays but not Fridays.”
“I’ll handle doctor visits; you please manage pharmacy runs.”
“I need two hours on Sunday for rest.”
These are not signs of weakness. They are signs of wisdom.
Small rituals matter too. A slow cup of tea on the balcony. A ten-minute walk in the sun. A short conversation with a friend. A page in a journal. Three deep breaths before bed. These moments refill parts of you that caregiving slowly drains away.
Behaviour-management techniques also reduce stress significantly. Approaching calmly from the front and speaking gently can often reduce agitation. Use simple instructions. Engage the person in familiar tasks like folding clothes or sorting items. During sundowning, keeping lights bright and reducing evening noise helps. When the person becomes anxious, saying “I see you’re worried, come let’s sit and have tea.” Follow this by a soft distraction. It often works better than arguing or explaining.
Every evening, some carers do a small check-in—an “oxygen check”:
Did I eat properly?
Did I move today?
Did I talk to another adult?
Did I plan one thing that makes me happy tomorrow?
Is my sleep window protected tonight?
This five-minute check keeps them steady through long months.
Dealing with guilt: the biggest barrier to self-care
Many caregivers feel that asking for help means they are failing their duty. Others fear judgment from relatives. But duty does not mean destroying yourself. Duty means sustaining yourself so you can care with patience, love, and dignity.
More families are now realising that caregiving should not fall on one person. Rotating tasks is a sensible strategy. Sharing responsibilities is also reasonable. Hiring trained attendants for a few hours each week is wise, not a sign of weakness. Many temples, churches, mosques, and community groups now openly support and admire caregivers who ask for help.
Support groups and memory clinics are powerful spaces where caregivers learn from each other. Someone will share how they managed night wandering. Someone else will recommend a diaper brand that doesn’t leak. Someone will cry. Someone will laugh for the first time in months. In these groups, people who thought they were alone discover that their story is shared by millions.
Respite care is another lifesaver. Even two hours a week, when someone else takes over, can prevent emotional collapse. Day-care centres, short-stay facilities, and home attendants allow caregivers to rest, nap, go for a walk, or breathe without pressure.
Counselling is also practical—not a luxury. A few sessions with a therapist can help carers manage frustration. They can communicate boundaries. Therapists help in processing the grief that comes with watching a loved one change.
And then there is sleep. If nights are breaking you, treat sleep as a health emergency. Discuss it with doctors. Explore sleep training programmes. Ask family members to rotate nights. You deserve rest. Your body requires it.
Caring for the Carer is not a philosophy. It is daily survival.
One morning, after weeks of trying small changes, Rita woke up at 6:10 a.m. She had slept six hours—still less than ideal, but better than anything she had managed in a month. Her brother had handled the midnight wandering, and the motion chime alerted him instead of her. Standing on her balcony, watching the city slowly wake, she poured hot water into her tumbler and opened her journal. She wrote three simple lines:
I am allowed to rest.
Routine is kindness.
No one cares alone.
That is the oxygen mask principle—not selfish, but steadying. Your body is the engine that keeps the family running. Your mind is the compass that guides the care. Protect both.
Start small this week:
Choose a sleep window and guard it.
Walk ten minutes after lunch each day.
Book one small respite slot—just two hours—and use it to rest, not to run errands.
Caregiving is a marathon made of many sprints. With support, pacing, and breath, you can walk this road with dignity—your own, and your loved one’s.
Join me next Thursday for Part 12 of this series – Beyond Amyloid. We shall explore the new approaches in research in simple language. We will discuss what we know, what still confuses scientists, and what gives real hope today.
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