Managing Caregiving Transitions from Hospitals to Skilled Nursing, Rehab or Assisted Living and Back Home

2. Advocate for them … and for yourself

In any transition, you’ll be advocating for your loved ones, ensuring they are informed as appropriate, that care plans are in their best interests and that they receive high quality care along the way.

Check admission status. If your loved one’s Medicare is paying for the hospital, find out if they are under "observation status" and how that could affect Medicare coverage if they are discharged to a rehabilitation facility.

Understand discharge timing. If you believe your loved one is being discharged too soon — if they aren’t ready or if you haven’t had enough time to set up their next location — don’t be intimidated. You can file an appeal. Talk with Medicare, the insurance company and the hospital or facility social worker or hospital admissions office about the appeals process.

Monitor care and communication. Ensure that medical records and information about your loved ones’ conditions, treatments, medications and care needs are being shared between the hospital, facilities and in-home care providers. Never assume communication or transfer of medical records has taken place. Monitor their adherence to discharge plans and instructions.

Be there. Research indicates that patients do better with follow-up if a family caregiver is there to hear and note discharge instructions for medications and care. So make it your business to be there — either in person or virtually, via video chat or phone — for each transition. If you are unable to do so, make sure to arrange for a care manager, family member or friend to be present.

3. Insist on the three “I’s”: information, inclusion and instruction.

At the hospital, you’ll want to make sure that you get the following:

Information. Obtain printed copies of all pertinent information, including

• Current medication list and prescriptions (flag any changes).
• Summary of their visit (diagnosis, treatment, prognosis, surgeries, limitations, etc.).
• Rehabilitation recommendations and discharge orders.
• Any scheduled follow-up appointments.

Share this information with those who will care for your loved one next (doctors, facilities, home health aides, professional caregivers, etc.).

Inclusion. Make certain that you are included in care planning discussions and are informed of changes and decisions. If you have health care power of attorney (POA) for your loved one, you can make decisions for them. Be sure to care a copy of the POA with you.

Instruction. Nearly half of family caregivers are expected to perform follow-up medical and nursing tasks, so be sure to ask for detailed instructions/training (which is required by law in some states). When my dad was discharged from the hospital with a feeding tube, I was given just a few minutes of explanation on how to deal with it.

It was complicated, and we were back in the hospital multiple times when it clogged. I received help from the home health nurses, but you can bet the next time we had a hospitalization, I advocated more strongly for the information I needed to do my job as a caregiver.

4. Select a facility: rehab center, skilled nursing facility or assisted living

It’s a good idea to be aware of the hospitals,  rehabilitation centers, skilled nursing and assisted living facilities in their immediate area. Review ratings of Medicare-certified facilities at the Medicare Compare site, and talk with family members of people who have been there. 

Next, have a conversation your loved one about their preferences, goals and wishes about where they would want to receive treatment, rehabilitate and live if necessary. Make a list of your top three to five options. 

Here are a few things to consider when looking at your final list

• On-site services provided
• Staff-to-patient ratio
• Type and frequency of rehabilitation services (acute, subacute, skilled nursing, etc.)
• Transportation to health care appointments provided
• Activities and meals

Make an unscheduled visit, it possible, to check out the facility and get a feel for cleanliness, residents’ happiness and staff attitudes.

While there, consider how it easy it will be to visit. Socialization is a key component for motivation and healing. How far away is it from friends and family? Find out the facility’s visitation rules, including the number of visitors and visiting hours and the steps the facility is taking to protect residents from COVID-19 and other infectious diseases.

5. Transitioning home after hospital or rehab

Whether your loved one is moving back into their house, or a family member’s house, try to have these things in place before their discharge.

Home safety modifications. Ask the physical and occupational therapists your loved one has been working with in the hospital or a certified aging-in-place specialist to help you evaluate the home for safety. The AARP HomeFit Guide to help you determine if home modifications are needed, such as installing ramps, handrails, lighting, grab bars, etc.

Home-based medical services. The hospital or facility discharge planner or social worker can help you find and get physicians orders for home-based medical services. They should also explain insurance coverage for services like home-based primary care, laboratory services, X-rays and physical, occupational or speech therapy.

Medical equipment such as a wheelchair, walker, cane, oxygen, shower chair, raised toilet seat and determine insurance coverage. A physical and occupational therapist can help arrange this.

Paid in-home caregivers or aides. Your loved one may initially be eligible to receive short-term home health aides and other services covered by Medicare, but you’ll need a plan for future care if they will need ongoing help. If they are eligible for Medicaid, ask about ongoing in-home care. Contact the local area agency on aging to ask about caregiver support and affordable home- and community-based services and ask for an in-home assessment.

Have doctor’s orders sent to service providers. Be sure to have orders for in-home services sent directly to the home-care agency, if you are using one (and get a backup printed copy for yourself as well).

6. Get realistic about the future

Sometimes hospitals or rehab/nursing facilities are unrealistic about what setting is best for our loved ones or about how much a family can handle in terms of future care. It’s up to you to stay rooted in reality.

I’ve learned to ask a lot of questions, observe loved ones in therapy sessions, monitor their medications and assess their capabilities, and weigh it all along with their needs, wishes and quality of life before making decisions about the next step. I also assess the home situation and potential facilities realistically — what initially may seem like the easiest next step may not neccessarily be the best one for your loved one.

If you can’t provide all the direct care yourself, you are not a failure. You are still doing your job as a caregiver when you coordinate the care.

As I often say, I’ve learned that I can do anything, but I cannot do everything! Line up the support you’ll need from care managers, care providers, family members and friends. Build your team.

7. Remember to care for yourself 

Throughout the transition, make it a high priority to take care of yourself. I’ve experienced a lot of anxiety, stress, exhaustion and anxiety during these transitions. I once thought I might be having a heart attack after being in the hospital with my mom for about 30 days. I eventually learned it was a panic attack.  

While we must let go of many routine self-care habits in a crisis, I’ve learned the hard way that I do my best to build in some elements of self-care (especially good quality sleep) or else I will crash and be of no help to my loved ones.

While some transitions go more smoothly than others, no transition is perfect. Just do your best with the information you can gather; you can make new decisions as the situation changes.

AARP resources

Here are a few resources that can help caregivers.

Helpline. AARP has a toll-free caregiver resource line and agents can guide you to resources. The lines are staffed Monday-Friday, 8 a.m. to 8 p.m. ET at 1-877-333-5885, or in Spanish at 1-888-971-2013

Local services. AARP’s initiative with United Way connects caregivers to help in their state or community. Check out the online family resource guides with directories of services or call 211 for advice.

Online support from peers. AARP's Family Caregivers Discussion Group is a private Facebook group I moderate where caregivers can seek support and offer support to others.

Editor’s note: This article, originally published on Oct. 27, 2021, has been updated with additional information by the writer.