When you can no longer provide care

JDancer

I came across this helpful post on another forum so I decided to share it. It's a response to a person in CA, so medi Cal is mentioned, but I feel like this is universally helpful. It was written by David Halpern, author of "Overwhelmed With Family Caregiving-Now take Control."

It is very courageous for you to post your dilemma here. You spoke up and said “I can’t do this anymore.” Many of us experienced the same. What you described is not normal caregiving stress. It’s a 24/7 safety crisis, and no single person can manage this at home. You are not failing her. The situation has outgrown what family care can safely handle.

A few important things you need to know right now.

First, do not agree to take her home if it is unsafe. An unsafe discharge is a real thing, and hospitals are legally required to address it.

Who to talk to at the hospital (and in what order)

Ask to speak to all of these people, not just one:

• The hospital case manager

• The hospital social worker

• The attending physician or hospitalist

• If needed, the charge nurse

• If you hit resistance, ask for Patient Advocacy or the Hospital Ombudsman

You may need to repeat yourself. That’s okay. Be calm, firm, and consistent.

The key phrase you must use

Use the words “unsafe discharge.” Those words matter.

Here are scripts you can use. You don’t need to explain your whole life story. Short and firm is better.

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Script 1 – Unsafe discharge

“I am formally stating that discharging my mother back to my care would be unsafe. She falls, wanders, is incontinent, has severe nighttime behaviors, and requires physical assistance I cannot provide. I am not able to safely care for her at home.”

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Script 2 – Refusing responsibility

“I need to be very clear. I am not refusing care out of convenience. I am physically unable to manage her needs and prevent harm. Sending her home would put her at serious risk.”

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Script 3 – When they say ‘one month of skilled nursing’

“One month does not resolve a progressive dementia. Her condition is not temporary. She needs long-term placement, not a short stay followed by discharge back to me.”

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Script 4 – When they imply ‘she has to go home’

“I am not able to accept her back into my home. If she is discharged without a safe plan, that would be an unsafe discharge. I need this documented in her chart.”

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Script 5 – Medi-Cal resistance

“I understand placement is difficult, but difficulty does not change medical reality. She cannot safely live at home. I need the hospital to pursue long-term Medi-Cal placement options.”

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Script 6 – If they minimize dementia behaviors

“She is wandering, falling, incontinent, disoriented, and awake all night. I cannot lift her. This is not manageable with home care. This requires 24-hour supervision in a facility.”

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Script 7 – If you feel brushed off

“I am asking for a care conference with the medical team, social work, and case management present. I need a safe discharge plan that does not involve me taking her home.”

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A few hard truths, said with care: • Facilities are not ‘drugging and abusing everyone.’ That fear is common, but the bigger danger right now is unmanaged dementia at home. • Dementia-capable Medi-Cal beds are limited, but the hospital cannot simply push her back on you because the system is full. • You have already gone far beyond what one person can do. Since 2014. That matters.

If placement takes time, the hospital may keep her longer while searching. That’s uncomfortable, but it’s better than an unsafe discharge.

You are doing exactly what a responsible caregiver does when the situation becomes dangerous: you escalate it to professionals.

Stay firm. Repeat yourself as many times as needed. Ask for documentation. And please hear this clearly: you are not abandoning her. You are protecting both of you

terei

This is all absolutely on target. If your LO is hospitalized and you no longer can manage care, this is the way to handle having them helped