🎵 “Should I Stay or Should I Go” – EOA When Home Stops Working (The Clash)
This may be the hardest decision an Alzheimer's caregiver ever makes.
Not diagnosis.
Not taking away the keys.
Not memory care shopping.
This one.
The moment you realize:
👉 Love may no longer be enough.
Because no matter how much you love someone, there may come a day when their care needs exceed what one exhausted spouse can safely provide.
And that realization comes with a level of guilt that is hard to explain to someone who hasn't lived it.
🏡 The Question Nobody Wants To Ask
When does home stop working?
Most caregivers don't wake up one day and decide:
👉 "Today is memory care day."
Instead, it happens slowly.
One safety concern.
One fall.
One sleepless night.
One wandering incident.
One aggressive episode.
One hospitalization.
One impossible day at a time.
🧠 What Stage Does This Usually Happen?
For many Alzheimer's families:
Stage 4–5
Most people can still remain at home with supervision, structure, and support.
Stage 6
This is where many families begin seriously considering:
Home health aides
Adult day programs
Respite care
Assisted living
Memory care
Stage 7
Most individuals eventually require full-time care and assistance with nearly all activities of daily living.
⏳ How Long Do Stage 6 and 7 Last?
Every person is different.
There is no clock.
However, Alzheimer's organizations generally estimate:
Stage 6 (Moderately Severe Dementia)
Approximately 1.5–3 years on average.
Common signs:
Increased confusion
Assistance with dressing
Assistance with bathing
Toileting difficulties
Wandering risk
Sleep disturbances
Sundowning
Personality changes
Stage 7 (Severe Dementia)
Approximately 1–2.5 years on average.
Common signs:
Limited speech
Difficulty walking
Difficulty swallowing
Complete dependence
Incontinence
Increased medical complications
Some people progress faster.
Some much slower.
Especially with Early Onset Alzheimer's.
💔 Have You Discussed Your Limits?
This is the conversation nobody wants to have while your spouse can still participate.
But you should.
Ask:
👉 What are our limits? (and not in a kinky way)
What happens if:
You become bedridden?
I can't safely lift you?
You become aggressive?
You start wandering?
You no longer know who I am?
You require two-person transfers?
These conversations are uncomfortable.
But they matter.
🏋️ The Physical Reality
Love does not magically make you stronger.
At some point ask yourself honestly:
Can I safely:
Lift my spouse?
Catch them if they fall?
Get them off the floor?
Help them into the shower?
Help them onto the toilet?
Change bedding every day if needed?
Handle nighttime accidents?
There is no shame in answering:
👉 "No."
🚑 What About Lifts?
Many caregivers ask about a Hoyer lift.
What Is A Hoyer Lift?
A mechanical lifting device used to transfer a person safely:
Bed to wheelchair
Wheelchair to toilet
Wheelchair to shower chair
Without lifting their full body weight manually.
Does Medicare Cover It?
Medicare may cover a patient lift when medically necessary and prescribed by a physician as durable medical equipment.
Requirements vary.
A doctor must document the medical need.
Many caregivers don't realize these devices exist until they desperately need one.
🚿 Can You Safely Shower Them?
One of the biggest caregiving transitions comes when your spouse forgets:
How to operate the shower
Hot vs. cold water
Shampoo vs. body wash
How to sequence the steps
Now ask yourself:
Can I safely help?
Because wet floors plus dementia plus mobility issues equals:
👉 Falls.
And falls change everything.
💔 The Bathroom Question
Nobody wants to talk about this.
But we need to.
Can you handle:
Incontinence?
Adult briefs?
Soiled bedding?
Soiled clothing?
Cleaning accidents off the floor?
Multiple changes per day?
Because Stage 6 and Stage 7 often bring these realities.
And there is no judgment here.
Only honesty.
😡 What About Aggression?
This is often the deciding factor for families.
Not because they stopped loving their spouse.
Because safety matters.
Aggression may look like:
Hitting
Kicking
Pushing
Yelling
Threats
Refusing care
Sometimes aggression is driven by:
Fear
Pain
Infection
Medication issues
Sundowning
Confusion
Talk to your neurologist or geriatric specialist.
There may be treatments, medication adjustments, behavioral strategies, or medical causes that can help.
🌙 What About Sleep?
If you're awake:
Every night
Multiple times a night
Watching for wandering
Redirecting confusion
Cleaning accidents
Eventually:
👉 The caregiver becomes the patient.
Sleep deprivation is dangerous.
For both of you.
🚩 Signs Home Care May No Longer Be Enough
Not one sign.
Usually several.
Safety
Frequent falls
Wandering
Leaving the stove on
Unsafe behavior
Physical Care
Two-person transfers
Cannot walk safely
Cannot toilet independently
Behavioral Changes
Aggression
Severe sundowning
Hallucinations
Constant supervision required
Caregiver Burnout
Exhaustion
Depression
Health decline
Inability to work
Feeling trapped
💔 The Emotional Weight
This is where caregivers break.
Because it feels like:
👉 Giving up.
But sometimes it isn't giving up.
Sometimes it is recognizing:
"I cannot safely provide the level of care my spouse now needs."
Those are not the same thing.
🧠 Reframe The Question
Instead of:
❌ "Am I abandoning them?"
Try:
✔️ "Can I still safely meet their needs?"
Because eventually the answer may become:
👉 No.
And that does not mean you failed.
It means the disease progressed.
💛 What I Hope
Personally?
I hope we can stay home as long as possible.
I hope I can keep him safe.
I hope we never need memory care, but I also know he and I have discussed my limits personally.
I hope all the plans I researched never become reality.
But hope and planning can exist together.
And every caregiver should have a plan before they need it.
🎵 Why "Should I Stay or Should I Go"
Because every Alzheimer's spouse eventually asks:
I still do this?
Should we keep going?
What happens next?
And sometimes the answer changes.
Not because your love changed.
Because the disease did.
💭 Final Thought
One of the bravest things a caregiver can do is tell the truth.
The truth about their limits. (also understand as time passes, you may realize you can do more than your orginal limits or LESS)
The truth about their health.
The truth about safety.
Because keeping someone home at all costs is not always the most loving choice.
Sometimes the most loving choice is making sure they get the care they need—even when it breaks your heart.
Helpful Resources
Alzheimer’s Association – Late-Stage Care Planning
💬 Disclaimer
This post reflects personal caregiving experiences and general educational information. Every Alzheimer's journey is unique. Decisions regarding home care, memory care, medical equipment, safety, and long-term placement should be made with healthcare professionals and based on individual circumstances. I’m not a doctor, lawyer, therapist, or expert—just a wife trying to figure this out one day at a time. Everything shared here is based on our experience and things that have helped us along the way. Take what helps, leave what doesn’t, and always check with professionals when needed.
I also use AI to help clean up my writing, organize thoughts, and pull together resources because honestly… caregiver brains are tired too. If something here helps another family feel less alone, then it’s worth sharing.
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