By Donna Plunkett St. Clair
I’ve done it wrong. Not just once, but twice. This is despite having clarity of mission in my aggressively pursued quest to find a good place for my husband, Bruce.
Like most caregivers, I had always hoped and planned to keep him at home until the end. Also, like most caregivers, I realized that doing so was a very tall order. His needs are limitless and my abilities to meet them are not. Your story likely has much in common. There are valid reasons that the vast majority of dementia patients reside in institutional care—and it’s not because nobody loves them. In so many cases, at least one person has given all but their life to provide care at home until their ability or health breaks under the weight of caring.
My extensive personal experience and that of others has led me to conclude that most institutional care facilities are merely adequate, achieving mediocrity as the norm. A few are horrible. A few others are wonderful, the pinnacle that we caregivers seek. But this is a search fraught with pitfalls and perils. I hope to help you avoid at least a few of the many mistakes I made.
Successfully Choose a Dementia Care Facility.
Here’s What to Do, and What NOT to Do
- DON’T WAIT UNTIL YOU NEED THE SERVICE TO START LOOKING: BEGIN IMMEDIATELY!
I did exactly this, not just once, but twice. Both times the search was prompted by his aggressive behaviors scaring the wits out of me. There’s no excuse. I should have pursued this long before it was an emergency. Looking for a facility during a crisis guarantees you’ll have to settle for anything you can get. They all look fairly okay on the surface. Most administrators have a flashy smile, a fancy brochure and a convincing, reassuring sales pitch. “Oh, it’ll be okay,” I told myself both times. No, it wasn’t. Whatever else you do, start visiting right now—notepad in hand—and find the facilities that you like. That you trust. Can’t find any? Keep looking. Drive out farther. It’s better to have your loved one in a top-notch facility an hour away from home than in a rat-hole up the street. (I did that twice.)
>> LESSON LEARNED: Be sure to bring and use your pen, notebook, and best questions — and start investigating potential facilities NOW.
- DON’T ASSUME THAT ONE SIZE FITS ALL: THERE ARE VARYING LEVELS OF RESIDENTIAL CARE
We tend to call all facilities “nursing homes,” but there are really at least three different categories.
- Assisted living—basically, a place to stay that includes some extra help with housekeeping, medicines, clothing, etc.
- Memory care—significant help with all Activities of Daily Living (ADL’s) for those who are still able to benefit from socialization
- Skilled nursing—extensive care for those who are bed-ridden or wheelchair bound and for whom socialization generally yields minimal results.
I knew enough to realize that I needed “memory care,” but I didn’t think about what happens when Bruce gets even worse. Was the place equipped to handle that? Some say they are, claiming that they can simply provide more intense care on site. I’ve seen that work very poorly, with the same overworked staff now required to provide full-service care to someone who was somewhat independent just a few short weeks ago. Get a facility that has its own onsite skilled nursing facility, where your loved one can be moved elsewhere within the same building for more extensive care services. The last thing you want is to have to relocate your loved one to another company’s skilled nursing unit during a crisis. There will likely be a waiting list at another facility and will have to go through the whole admission process again. Even worse, you’ll have to investigate the new facility in a panic. Again.
>> LESSON LEARNED: Be sure to ask exactly how your loved one’s care will progress as they decline.
- DON’T BELIEVE IN HAPPILY EVER AFTER: WILL THEY DISCHARGE AN UNRULY RESIDENT?
At least some Lewy Body Dementia caregivers turn to facilities after their loved ones have become aggressive or combative. That was my case, both times. Here’s the problem: do you realize that many facilities won’t keep someone if they behave in that fashion? It’s true. In fact, at my first failed placement, I was actually panicked and ignorant enough to sign a statement agreeing that my loved one would be removed if he was considered a danger to himself or others. What? Imagine that picture: you get a call at ten minutes to midnight on a rainy Friday night (when else would it be?) that Joe has thrown his shoe into the fishtank and is threatening to do it again … so you have to come remove him. Can’t imagine such a thing? Think again. It happens all the time. Most of these places have waiting lists, and if they can trade away a “problem” patient for a well-behaved one, that’s a better deal for them, isn’t it?
>> LESSON LEARNED: Be sure to ask exactly how “problem behaviours” are defined and managed. Get clear answers and examples of what might lead to a resident being forced to leave.
- DON’T EXPECT FICKLE FINANCES TO SUPPORT YOUR CHAMPAGNE DREAMS
You likely want nothing less than the best treatment for your loved one. Unfortunately, that is not what most of us are going to get. Take a realistic look at your finances. A hard look. Here’s the problem: the vast majority of memory care facilities do not accept Medicaid (the federal, state-administered program for low-income individuals) at least, not initially. Unless you bought a long-term care policy while you were young and healthy enough to afford it, your expenses are going to be 100% out of pocket. You will pay every single penny. Here in the center of Virginia, memory care facilities are going for $4,500 – $5,000 monthly. I found an ideal “Green House” village nearby that costs $9,500 monthly. You have to show evidence of your ability to pay all the bills for no less than two years; then, if you qualify, they will help you apply for Medicaid. The Roman Catholic facility that I really like in Charlottesville is about $7,500 monthly. There, you have to document solvency for three years, and then they will discuss alternate financial arrangements with you: I’m not sure exactly what that means yet. Here’s the long and short of it: Unless you have enough monthly income to cover $5,000 – $10,000 in EXTRA expenses, or unless you have about $250,000 somewhere in savings or investments, you are not going to be able to afford memory care for your loved one. That is one of the toughest pills to swallow–that along with the fact that your monthly fee is often just a base payment. Countless other “extras” are billed in addition to the base fees: this can include any one-on-one staff time, haircuts, nail clipping, medicines, diapers, and more. Memory care facilities are simply unaffordable for many people.
>>LESSON LEARNED: Be sure you know exactly what you can afford BEFORE you fall in love with a facility that is out of reach. WIth less money, you’ll need to alter your expectations and likely broaden your search.
- DON’T THINK THAT 1980’s DESIGN IS PERFECTLY OKAY: DO THEY INTEGRATE NEW KNOWLEDGE?
It’s not OK. White toilets against white walls? White plates on white tablecloths? Long hallways with all doorways painted the same color? Dimly lit corridors? Over the past 20 years, great inroads have been made with environmental design innovations to manage the various challenges of dementia. The ideal facility ought to be incorporating as many of those as possible. Not every place can be “open-concept,” but they can, at least, paint residents’ doors different colors for easy identification. There are many other simple changes that improve quality of life. Red plates should be on the table to stimulate appetite. The wall behind the toilet can be painted in a contrasting color; even a bright red toilet seat is helpful for aim. Bright lights are one of the best ways to combat sundowning by limiting shadows. Laminate floors have been shown to be the easiest to visualize and navigate, so why do many facilities insist on shiny linoleum or busy patterned carpets? Many of the troubles of dementia are related to visual disturbances. There is no excuse for any facility to add to our loved ones’ troubles!
>>LESSON LEARNED: Be sure to assess whether the facility is using innovative approaches to design, which can include colour, light, patterns, individualization, etc to improve comfort and behaviour by attention to the environment.
- DON’T FOCUS SOLELY ON THE INSIDE: CAN RESIDENTS EVEN ACCESS ANYTHING OUTDOORS?
Do you realize that some institutional residents almost never see the light of day? (Oh sure—no problem, we just give ‘em a good dose of Vitamin D, right?) The first place I placed Bruce had no plan whatsoever for getting residents out into the sunshine. Fail. Occasionally, those who could walk, went from the front door to the waiting mini-bus for a 30-minute scenic drive somewhere, but that was about it. The second place had a rather sparse, meandering courtyard, but residents had to be accompanied to go out. Access doors were locked. Could you imagine being placed somewhere that you could almost never go outside for a breath of fresh air? There’s a term for that—it’s called “Cabin Fever.” Not good. Many people in prison get more time outside.
>>LESSON LEARNED: Be sure to examine outdoor areas at the facility, and ask about the resident’s opportunities to go outside safely.
- DON’T FORGET ABOUT SAFETY: HOW’S THEIR RECORD?
I neglected to ask these questions at Failed Facility #1, although I did ask at Failed Facility #2. Ask how many residents have escaped the lock system. Ask how many violations they received at their last government inspection. Ask about their policy for reducing falls. (No facility on earth can eliminate the possibility of falls altogether, but they sure can minimize them—challenge them to define their plan.) If they have a plan, they won’t mind sharing it. And while you’re at it: when was their last evacuation drill? They may have convincing, but evasive answers including “we’re not authorized to release that information,” to which you can decide how to respond.
>> LESSON LEARNED: Be sure to ask every question you can think of concerning their plans for safety. Bring a written list of consistent questions to ensure you get comparable answers from every potential facility.
- DON’T NEGLECT THE OBVIOUS: STAFFING LEVELS AT “OFF-PEAK” TIMES
What is your loved one expected to do on the weekend from 5pm Friday until 8am Monday? Most facilities reduce their staff by up to one-third, with no planned activities at all. Confused, disoriented residents are left to wander the halls, trying to figure out what to do. How would you like to be trapped in that? Both of our failed facilities were torture chambers on the weekends. (And they wonder why so many residents simply choose to sleep.) Evenings are another problematic time with reduced staff. Among a population known for evening and night-time behavior problems, it is hard to see how anyone could conclude that fewer people are needed on staff during those times.
>> LESSON LEARNED: Be sure to ask about staffing levels, activities and supervision for holidays, evenings and weekends.
- DON’T MAKE ASSUMPTIONS ABOUT SERVING SIZES, SECOND HELPINGS … AND A DRINK OF WATER
With what you’re paying, facilities ought to be offering up high quality, plentiful meals and adequate hydration. Based on experience, I do not believe that. Seldom are residents of most nursing homes allowed to have second helpings of something they really like. Our companion, Rosa the Wonderful, asked for ice cream for Bruce at Failed Facility #2. The aide brought out a small single-size cup of ice cream, then snatched his dish of pears off the tray. Apparently, he could not have both. Let me also add that my husband is about 30 pounds underweight. When the temperature in his room soared to 80-degrees, he was sweaty and thirsty, without a clue about where to go to get water. Water. It’s free. You’d think it would be plentiful in memory care facilities. You may think wrong.
>> LESSON LEARNED: Be sure to ask about hydration, second helpings and snacks. Answers such as “all he has to do is ask” is insufficient. Residents should be offered food and drink on a regular basis, and particularly encouraged with hydration.
- DON’T NEGLECT TO POP IN AT VARYING TIMES—BEFORE YOU PLACE
When you meet with the administrator, they will show their best side. Before you sign anything, tell that administrator that you would like to observe the facility several times, just as though your loved one were already placed. Go at night. Go on Saturday afternoon. Go on Sunday morning. Leave, and then come back an hour later. Note what you see. Staff playing on their cell phones is not the best sign, but that is exactly what you are going to see at some facilities. Approach and ask other visitors what their experience has been and how their loved one is treated.
>> LESSON LEARNED: Be sure to check service levels and quality when they least expect you. Check at different times and ask other residents and visitors.
Good luck in your search! I hope some of my missteps will prevent you from experiencing them. I think the facility in Charlottesville is going to be a good fit for Bruce. I am lucky in that I can afford it for the required three years and a little more. After that … we’ll see.
About the author: Donna Plunket St. Clair is a veteran, both of the US Military in Vietnam as a journalist, and as a care partner who tirelessly advocates for her husband Bruce, diagnosed with Dementia in 2010 at 59 years of age and with LBD in 2015 at 65 years. She has pioneered novel treatments and successful behavioural modifications to make their lives as good as possible under the circumstances. She has had less success at behavioural modification for those with four legs — including their cats: Lady Diamonda, the retired Siberian show queen, and Blossom, the scrappy street urchin.