Lessons Learned About Getting A Loved One into Assisted Living

Convincing your relative to go into an assisted living facility is only step one — learn more about what comes next

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Maybe you’ve read articles related to getting your debilitated mom, great Aunt Marge, or older brother to agree to moving into an assisted living facility. That’s a big hurdle. But you’ll also find yourself inundated with tasks if and when it does happen. I know because it’s something that recently happened to me, with an elderly relative whom I’m calling “Harriett” (not her real name) — and it’s still going on today. So, if you’ve stumbled onto this post because you’re in that situation, give me a few minutes to describe some of the lessons I’ve learned during the three phases of this transition:

Shopping for a facility, and helping your loved one to want to move in
Making the transition to the chosen facility
Dealing with an empty house

Shopping for the “best” assisted living facility

If I had waited for my elderly relative to independently identify, choose, and move into an assisted living facility, it would never have happened. I had to lay the groundwork.

At first, I assumed the criteria for the “best” assisted living facility would be a matter of proximity, cleanliness, reputation, and an aesthetically pleasing environment. Meanwhile, I tried to hasten my relative’s decision by focusing on the facility’s services that would overcome her current limitations of living in her own home — e.g., easy transportation and activities to alleviate boredom. Hence, I arranged to tour as somewhat of an “advance scout,” hoping to weed out the “bad” ones and persuade her to tour the “good” ones.

On those initial tours, I took along a friend who had extensive professional experience as well as personal experience with an elderly relative. After the tours, she remarked, “The meals, the wallpaper, and the prices are all very similar. But the sense of caring and community was often very different.” I agreed, wholeheartedly.

After touring several facilities, I realized that the “good” ones were:

Engaging: The staff initiated some interaction with us as the guide walked us around.
Flexible: They described what they typically provide, but cheerfully agreed to give some leeway when it was reasonable to do so.
Multi-level: They offered increasing levels of care, if needed.

In retrospect, I would ask to see a calendar of the daily activities. After signing up, I realized that although our chosen facility does offer the promised daily activities, most of their in-house activities are unexciting and the few external activities they offer aren’t much better. I had assumed they would offer trips to local parks or attractions — perhaps even a day trip — but that is not the case.

Consider hiring a private nursing service

After more than three years asking my relative to consider assisted living, I began to think it was hopeless. It was like talking to the wall. No matter how gentle I was, it just caused an argument.

I finally hired a service that provides nursing care for those who are at home, or who need to transition out of their homes. The nurse had extensive experience with dementia and elder care, and she was able to give a more meaningful spiel to my elderly relative than I could. Also, she was a little more removed from the personal dynamics.

She also helped to create a smooth move to the facility. I wouldn’t say she took care of everything, but together, we took care of all sorts of issues related to moving furniture, clothing, getting the TV set up, and so much more.

Making the Transition

While helping my relative transition from her home into the assisted living facility, I had more tasks than I ever could have imagined. But the big kahuna was locating, copying, or scanning documents, and then submitting them before admission.

Do the paperwork

There’s a ton of paperwork to be completed. All facilities seemed to want

basic medical information (past surgeries, allergies, etc.),
identifying numbers and/or proof of existence documents (social security number, bank account number, etc.), and
access to and/or permission to access all sorts of information, and permission to provide certain services, e.g., transportation.

First, you’ll need to locate that information, copy and/or scan it, and then transmit it to them. Start with list-making. Later, you’ll need a clearly defined system for filing this information and much more.

Make checklists (and other lists)

Ideally, the facility would provide a massive checklist, but after applying to more than one facility, I have learned that they do not. I dealt with multiple ongoing requests for specific documents, and often, more than one request for a document that I had already submitted.

One facility asked me to submit 31 documents. I made a big checklist in Evernote. (I have no affiliation with this software, but it’s one of the few apps I use and rely on daily.) I used one massive checklist in one note, but you could use different notes for different topics. (Evernote allows links between notes, and you can tag each note e.g., “Harriett” and “Assisted Living”.) Where appropriate, I attached PDF files to the note(s) to facilitate easy retrieval. In retrospect, I would probably create a separate notebook for all the tasks and information related to assisted living. In general, however, my checklist included tasks to gather 31 documents related to:

Healthcare: Recent immunizations, names of physicians, allergies, and more.
Financial: Authorization for ACH transfer, copy of healthcare insurance card, and more.
Legal: Proof of power of attorney or guardianship, healthcare proxy, advanced directives, and more.
Other: Anything else that might be requested, e.g., permission for evacuation to another location, veteran status consent, and more.

Email transmission is the default these days, but I refused to send private information that way. There are hackers out there, so know the dos and don’ts of safe transmission.

I also made a note that listed important numbers, and the fact that I had stored (or needed to store) those numbers in a secure place. The facility, the pharmacy, and others ask for information such as date of birth and Medicare number, for example.

I didn’t do this, but I suggest you make a list of abbreviations. As a seasoned clinical nurse specialist, I felt sure I knew all the abbreviations used in healthcare, but I was wrong! I was required to give a “BIN” number and a “PCN” number, and I had no idea what those initials stood for, or where to find the information. Luckily, I found this help related to BIN and PCN. I also learned that “AL”, used without definition in some documents, means “assisted living.”

Ask the chosen facility to provide lists and clarify practices

I insisted on getting a list of names, titles and contact information for each of the dozen or so staff at the chosen facility. I had to ask twice, but I finally got it.

The facility did not provide a list of “forbidden” items. As a nurse, I knew that state laws or local policies would forbid having some personal items in the facility. Typically, these include such things as electric blankets, candles, and more. (And knowing this will save you a lot of time if you’re trying to get rid of stuff in a hoarder’s house.) But I wish they had provided me with a list of these items.

Know the state laws and facility practices

It’s impossible to know everything about state laws related to healthcare, assisted living, and your role in all of that. I think the best way to identify relevant laws is to ask yourself three main questions:

What am I fearful of? What’s the worst thing that could happen?
What am I responsible for? What am I not responsible for that I could delegate to someone else? What services or interactions would she (or I) be entitled to?
What bugs the daylights out of me?

My biggest fear was that after voluntarily joining the assisted living community, she would change her mind and walk out. I started asking questions about “discharge planning.” Again, I knew how that worked in hospitals, but I didn’t know how that would work in this setting, or in this state. I started asking questions.

I also didn’t know what I or the resident was entitled to. For example, there are state-wide laws about regular health assessments of the residents. The frequency is “at least” 30 days, but what does that mean? Who decides if more frequent assessments are warranted? Or could I request those? If so, do I have the right to be present at those meetings?

What bugs the daylights out of me is “surprise” expenses. I learned that the Sunshine Laws (part of the Affordable Care Act) protect patients’ rights to know what they will be charged. And to be clear, I’m not an attorney, and this post is not legal advice. My advice is, ask the right questions, persist until you have satisfactory answers, and get professional advice. Again, the private nurse helped me to get some of the answers.

On a broader level, be aware of healthcare practices at the facility. It appears that assisted living facilities have a Wellness Nurse. (I think of this as somewhat akin to the responsibilities of the school nurse who performs routine screenings or takes a temperature if it looks like your kid has a fever.) Some of this may be specific to individual states, but try to find out:

if the facility is required to provide simple services which aren’t strictly “medical” care, which, nonetheless, they must carry out if there’s a physician’s order for it, such as assessing weekly weight. Know what they are obligated to do, and make sure it’s being done.
who in the facility is responsible for ensuring that the doctor’s orders are followed. Orders might be something as simple as a special diet, but it might be something like getting physical therapy. (She had a physician’s order for physical therapy that had been written in March, and by July the order had expired, unimplemented. Grrr…)

Arrange for mail forwarding

This felt — and still feels — like herding cats! The post office says that it takes at least two weeks for mail to be forwarded.

I did it right, but after three weeks, there was no forwarding. The second time, the postmaster himself completed the request. After three weeks, the mail was still not being forwarded. Fortunately, a third attempt worked. From my initial attempts, it took two months to get mail forwarded.

Even though I have notified various entities (utility companies, etc.), they are still not mailing to the new address. I can’t help you here, because I haven’t solved this yet.

Create a logical hard copy filing system

Your elderly relative might have little or no digital information. Going forward, there are many documents you’ll need to have in order, and odds are, they won’t be neatly filed all in one place.

I found hundreds of papers which had accumulated in multiple places over a decade or more. Often, these had major gaps in sequence, and they were sometimes semi-illegible or missing chunks of the page. I don’t think you can skip creating a hard copy filing system. These documents are good clues. After several months, I still haven’t had time to scan all the important documents, and I have not completely relied on online accounts.

I simply started with the documents I could immediately find. After much sifting and sorting (and discarding unimportant clutter) I set up a file drawer. I used hanging folders, colored tab dividers for the folders and tab inserts for the tab dividers I did them thus:

Financial (GREEN) included old invoices, bills, receipts, bank statements, tax information related to the current year, correspondence to the CPA and more. I gathered the previous years’ tax returns to relocate into a safe or a safety deposit box. Until I found and sorted all the documents, I didn’t know what I needed to hunt for — or keep. Things like the utility bills are obvious and arrive monthly. Other issues, such as bills for homeowners’ insurance, typically aren’t sent any more than once a year. So that got hairy.
Healthcare (BLUE) included documents related to Medicare, private insurance, multiple physicians (elderly people typically have several), dentist, pharmacy, and so forth.
Legal (YELLOW) included legal information that is publicly available, such as military records, permits, and court records. I made notes in the hard copy file about where sensitive information soon would be stored.
Household (ORANGE) turned out to be a huge chunk of the file. To line up services, I started with those old bills to see who had provided previous service for plumbing, driveway sealing, and more.
Other (PLAIN) might be contact information for the hairstylist, favorite restaurants, or information that might be helpful for the eventual funeral/burial arrangements and obituary (e.g., honors, awards, etc.).

By the way, it was too late for this situation, but my husband and I bought the Nokbox for ourselves so that when we get old, our younger relatives won’t need to struggle quite so much.

Dealing with an empty house

After your loved one moves into assisted living, you’ll need to take on all sorts of tasks where you truly have no idea what you’re doing. A handbook, developed as you go along, will help. And, asking others to help is critical if you plan to keep your sanity.

Start a “handbook” for services

If you’re acting as the guardian, power of attorney, or healthcare proxy, you’ll need to address many issues related to the elderly relative’s affairs. At the very least, you’ll need names and numbers handy for all sorts of things that your elderly relative might not be able to handle — or should have handled years ago. And, even if you’re a friend or a neighbor just trying to help, such a handbook could also be useful.

I compiled an extensive handbook; about 40 pages. I created five main sections, matched with the ones from my filing system: Health, Financial, Household (indoor and outdoor maintenance and repair), Legal, and Other. The “Other” included contact information for donation centers, helpful neighbors, and more.

Healthcare information is, of course, critical. Make sure you have everything you need to carry on any and all conversations and transactions with the assisted living facility, as well as healthcare providers, insurers, and everything and everyone else. In many cases, this may include the need for internet access and passwords to accounts.

Despite how extensive it was, my first few drafts of the handbook weren’t enough. Home maintenance and repair had been ignored for years, and I was not prepared for all that needed to be done. Here are my top suggestions:

General upkeep: The house is now empty. Make sure the lawn is mowed, and the mailbox emptied. Ask the neighbors what day the trash is picked up. (Believe me, you’ll generate trash if your relative is a hoarder.) Hire help and ask friends if you need to.
Safety: Make sure smoke alarms are installed and functioning and check for potential fire hazards. (I found the paper towels hanging a few inches from the toaster and the dryer lint backed up into balls the size of my fist.) Also check for water hazards (the septic tank had not been cleaned in a decade) and make sure equipment such as the dehumidifier is working. Ask the attorney if it’s okay to change the locks or install a camera if you are uneasy.
Bill paying: Make a list of all the bills you’d expect to see. You might not think of all of them. But start with a list of utilities, healthcare services (e.g., physician, dentist, etc.), and anything else that might be a likely expense. If you can, hire a bookkeeper. It will be a time-saver for keeping track of receipts, healthcare expenses (which may or may not be tax deductible) and more.
Legal papers: Locate and make multiple hard and soft copies of “official” documents that you will need to submit for various services, including the assisted living facility. At the very least, these include power of attorney papers and healthcare proxy papers. Stay on the lookout for the title to the car, the deed to the house, and anything else that you may need later. (I was unsuccessful finding either of those.)

Ask for help

I’ve felt very overwhelmed. But I’ve had the courage to ask friends and neighbors for all sorts of help. Often these are simple questions like,

This trash can is overflowing. Would you mind if I put some of this stuff in your trash can before trash day?
Would you be willing to drop this off at a donation site?
Can you refer me to a person/entity who offers [service]?
When should I expect the town property tax bill to arrive?
I’m whipped! Where can I get a massage in this area?

I can assure you, most people see that you’ve taken on a big responsibility, and they’ll cheerfully help in any way they can.

It’s an act of love

Getting a loved one into assisted living is a task that requires organization, endurance, and a whole lot of patience. It’s a lot to take on, and sometimes you’ll find yourself wondering why on earth it ever had to fall to you. In these moments, remind yourself of the reason you’re putting in the work: it is an act of love on behalf of someone important to you who is no longer able to do it for themselves.

So take heart, take breaks, and keep chipping away at the mountain of work. You’re helping someone live out the rest of their life in the most comfort possible, and that is a job worth doing.

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