Smart Caregiving by FCA: From the Hospital to Your Home

“My dad is being discharged from the hospital. He’s seriously ill, but I don’t want him in a nursing home. How do I know if I can care for him in my home?”

Please note: You can download a printable PDF of this resource.

It’s not unusual for family caregivers to want to bring a very ill family member home, to provide comfort during a difficult time. But caring for someone with serious illness at home is a significant undertaking that will have lasting impact on everyone involved. Taking time to think carefully about this decision is one of the most important things you can do right now.

Think before you commit

Discharge from the hospital often happens quickly, and it can be tempting to make impulse decisions. Many caregivers think, “I can do this for a month or two,” only to find themselves caregiving a year later, feeling depleted, financially taxed, and unsure how things got so difficult. Caregiving 101: Being a Caregiver offers an overview of what caregiving can involve day-to-day.

Consider whether your home is the right setting

Home feels like the natural choice, but it’s worth honestly assessing whether it can realistically meet your dad’s medical needs. He may require complex, hands-on care: managing medications, wound care, help with bathing or equipment like a hospital bed or wheelchair ramp. Is your home set up to accommodate these needs? What care might be needed as his condition changes?

Do you have time for caregiving while you work or juggle other commitments? Can your father stay alone safely, or will someone need to be present at all times? Who else in the family is available to help and for how long? Have you had a heart-to-heart conversation with them about helping by sharing care responsibilities?

Who pays?

Between medications, equipment, home modifications and paid help, the costs of caring for a seriously ill person can add up quickly. Investigate all of the financial resources available to you, including insurance, Medicaid and more. Our guide, Can I Get Paid for Caregiving? can help. The Financial Steps for Caregivers Budget Worksheet from Wiser Women offers a clear picture of the financial realities of caring for someone at home before you commit.

Thinking about reducing work hours or leaving your job? Consider what that means: not just the loss of income, but health insurance, retirement savings, Social Security accrual, and the parts of your life that exist outside of caregiving. Now is also a good time to make sure you understand your dad’s health insurance coverage, and Long-Term Care (LTC) insurance if he owns a policy.

Preparing to bring dad home

Hospitals will move to discharge a patient as soon as he’s stable. This may happen before you’re ready. Before agreeing to a hospital discharge plan, ask his health care team to clearly explain and document all his ongoing medical needs.

This includes medication he should go home with, what symptoms should prompt a call to the doctor or a return to the hospital and what follow-up appointments are needed. Get these instructions in writing, in a digital record you have access to, or a paper copy. Hospital Discharge Planning: A Guide for Families and Caregivers offers a checklist for these conversations.

Once dad is home, you may find yourself needing help. Smart Caregiving: Hiring In-Home Help can walk you through finding qualified support. The UCSF’s Palliative Care team’s Essential Tips for Caregivers is a good resource to help coordinate care for ill family members at home.

Important conversations

Clarify with your dad’s health care team what his recovery options are. Is care and comfort, like Palliative Care, recommended rather than aggressive treatment interventions? Understanding Palliative/Supportive Care: What Every Caregiver Should Know can help you consider options.

Work with your dad to find out where he keeps important information, like insurance policies, health care advance directives and other essential documents. Use our Where Are Your Important Papers? checklist to help guide your conversation. The more informed you are, the more confident you can be in providing for his care.

About end of life

Many caregivers avoid talking about end-of-life wishes. They fear raising the subject may feel like giving up or upset their loved one. In fact, having these conversations tends to help people feel more at peace and more likely to receive the care they want.

If your dad is still able to express his wishes, now is the time. What does quality of life look like to him? What kinds of medical intervention does he want or want to avoid? Who should speak for him if he’s no longer able to speak for himself? Advanced Illness: Holding On, Letting Go can help. Talking with Your Parents About Disability offers more guidance on discussing sensitive topics, and Five Wishes is a tool you can purchase for a small fee to create a legally recognized advance directive.

Moving forward

Caring for a seriously ill loved one at home can be one of the most challenging and time-consuming experiences of a caregiver’s life, but also one of the most fulfilling. If you take the time to plan and look honestly at your dad’s needs as well as your own circumstances, you can make thoughtful choices knowing you’re doing your best to provide for him.

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