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Where Is the ‘Assistance’ in Assisted Living?

Too many children of assisted living residents wonder why they shoulder so much


Part of the Transforming Life as We Age Special Report

Pam and her mother both thought that her mom’s move into an assisted living facility would solve a lot of problems. After Pam’s father passed away from ALS, her mother was diagnosed with cancer and Pam started to worry constantly about whether her mom was OK by herself. It was getting increasingly difficult to balance managing her life with helping her mom manage hers.

After Pam’s mom moved, she found that assisted living made some things easier for her. It relieved some of the burden of cooking, doing laundry and housekeeping, and she worried less about her mom being alone.

But the move hasn’t greatly changed Pam’s workload. And the facility fees are expensive. Pam even had to develop her own written system to help the nurses manage her mom’s medications.

A top-notch assisted living facility like the one Pam’s mom is in can run well beyond $50,000 a year. Pam finds herself asking, “For that price, why am I still in charge of everything?”

Surprising Limits of Assisted Living

Like so many daughterhood.org readers who’ve reached out to me (the site’s founder) on this topic, Pam discovered that there’s a big gap between what her mother still needs and what many assisted living facilities are equipped to do. And she finds herself still coordinating, managing and fretting about many aspects of her mom’s health care.

Assisted living facilities evolved to offer consumers an alternative to nursing homes — to provide a safer version of home that prioritizes hospitality, comfort and independence over the constant supervision and medical care of a 24-hour nursing facility.

But the problem is that the traditional assisted living model isn’t keeping up with the increasingly complex medical needs of our older adult population. Our parents are living longer with conditions that require a lot of medicine, doctors and too-frequent trips to the emergency room.

And we, the adult children, find ourselves managing it all, despite feeling like we’ve paid steep fees to get help. We’re still responsible for coordinating between the assisted living staff, the doctors and the hospitals; keeping tabs on medications and arranging transportation to medical appointments. Many of us have to hire aides to supplement the facility staff’s work.

Pioneering Assisted Living Programs

Thank goodness a few innovative assisted living providers are beginning to recognize the health care needs of residents.

They’re responding with new programs that combine traditional services (like meals) with onsite medical management. They recognize that our health care system is broken and that they can support residents and their families by being the system navigator and advocate.

For example, at Presbyterian Homes & Services, a Twin Cities-based nonprofit senior living organization that serves more than 1,000 assisted living residents in Minnesota, residents can get primary care from onsite nurse practitioners who conduct “house calls” to residents’ apartments.

The program also gives the assisted living staff access to after-hours consultation with the medical team. So when something worrying happens in the evening, the staff can get advice and support from the nurse practitioners before making a decision to send a resident to the hospital.

Juniper Communities is an assisted living company also serving over 1,000 residents at facilities in New Jersey, Pennsylvania, Colorado and Florida. The facility staff, a nurse practitioner and a “medical concierge,” stay closely connected to every resident, to each other and to the family through frequent team meetings, phone calls and other technology. CEO Lynne Katzmann calls the collective efforts of the combined housing and medical team “the adult daughter” component of her service.

The residents and their children call the Juniper program a significant help and one that relieves their burden and worry. Presbyterian and Juniper say they are sending their residents to the hospital 25 to 50 percent less often than their peers.

Ask 4 Probing Questions

How can we encourage more assisted living providers to offer similar programs? We have to start demanding it.

When you’re shopping for assisted living, here are four questions you can ask of the facilities in your area.

1. How do you prevent unnecessary hospital visits?

Assisted living staff often think they’re doing the right thing calling an ambulance in an emergency, and families many times encourage this. But the hospital is rarely the right place for your frail parent. It can create stress and confusion, lead to infections and complicate delicate care regimens. Ask assisted living facilities how they intervene before health problems escalate.

2. If my mom has to go to the hospital, how will you make sure she has a safe and successful re-entry when she comes back?

The worst mistakes happen between sites of care. So much important information is lost in the transfer. Find out what the facility does to take responsibility for helping their residents get safely to the hospital and back home.

3. Under what circumstances will I need to hire help in addition to what’s included in your fee?

Find out whether the assisted living facility will permit you to bring in your own aides, if necessary, and what they do to support you and that person. Ask also whether the facility has a designated outside agency it works with or whether you’ll have to find the extra care by yourself. Ask, “Who is in charge of my parent’s health care?”

4. How will you spot problems early and communicate concerns with me?

Too many times part of the challenge an adult child will face is getting information about what’s happening with their parent’s health. Find out how and with whom you can communicate to check in on how your mom is doing. And ask whether they are willing to share information directly with her doctor as well.

Don’t Relinquish Your Role

Just because your parent is in assisted living — or even a nursing home — doesn’t end your responsibilities. And of course we don’t expect that. But navigating the health care system on behalf of a loved one is much harder than it should be and we need allies. We need our team.

I hope that, as the population gets older, the systems to support it will grow. In the meantime, we are the agents of change — so we can all look forward to a better future for our old age.

By Anne Tumlinson
Based in Washington, D.C., Anne Tumlinson is the founder of Daughterhood, an organization she created in 2015 to meet a need for better community around providing care to a loved one. Anne is national aging expert who speaks and writes about how the nation can prepare for a growing population of the oldest old. Her research and consulting firm, Anne Tumlinson Innovations, develops new ideas to help organizations transform care delivery for frail older adults and their families.@Daughterhood

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