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Demystifying the Concept of “Assisted Living” For Our Aging Parents

Reasonable thoughts from a Geriatric Nurse Care Manager & Daughter

By: Hildy Sheinbaum, RN

A woman recently reached out to me for help with her mom. The mother had been living independently in an over 55 community in Florida, and served as the primary caregiver to her ailing spouse until his passing a few months ago. Upon visiting her mom in Florida after her dad passed, the daughter observed some troubling signs and became concerned for her mom’s safety and well-being. As there were no significant others or support for the mom in Florida, it was decided that a move back up north to live with her daughter and family would be the best thing for all. Unfortunately, it wasn’t that clear cut. Following the move, the mother became understandably depressed, missed her spouse, old routine, and the social interaction with friends. There were considerable memory concerns, and an aide was hired to ensure the mother’s safety while her daughter was at work. Yet the mother was lonely, and depression persisted. The daughter was worried, unsure how to proceed, but hoped that perhaps a move to an Assisted Living Community would provide her mom with safety and enrichment to improve the quality of her life. I was asked to assess the situation and offer my professional opinion.

When I arrived at the home, I observed my new client to be younger in appearance than her 88 years. While her mobility and strength appeared good, she was clearly emotionally frail, and I was struck by what appeared to be an overwhelming sadness about her. I wanted to wrap my arms around her and tell her “It will all be okay,” but her non-verbal cues told me I needed to maintain some space until I could gain a smidgen of her trust. I introduced myself, summarized my background as a nurse, and explained the reason I was there. The woman looked up, expended every ounce of energy, and blurted out, “Are you going to send me to a Nursing Home?” and then began to weep uncontrollably. Several thoughts ran through my mind at that moment, but the prevailing one was, “How sad that just a mere mention about ‘assisted living’ could evoke such a response.” I instantly reflected upon the numerous calls I receive from people expressing frustration that their parents simply “refuse to move.” And then I began seeing snapshots in my mind of Nursing Homes vs Assisted Living Communities. While I reassured my client over and over again, and attempted to describe the differences between the two, it was clear that she wouldn’t truly understand those differences until she could see them for herself.

The generation of our aging parents is a simple one– many were immigrants or children of immigrants who fled to the U.S. to seek opportunity, freedom, and the promise of a new world. Others were born here, and were raised with the basic assumption that reward will come from hard work and grit. They did what they needed to do in order to raise a family and put food on the table; their home was their pride, sacred in a sense. Many lived with extended families who cared for ailing parents or grandparents. But, it is a fact that with an increase in life expectancy comes more complicated medical conditions that require specialized and more complex care than what can be provided in a home. As Atul Gawande states in his incredibly insightful book, Being Mortal (I highly recommend reading), “Taking care of a debilitated, elderly person in our medicalized era is an overwhelming combination of the technological and the custodial.” So, we must seek alternatives to care for our aging adult population. The younger generations of today (and I include the “sandwich generation” in this group) find themselves in a contemporary, fast paced world where everything is at our fingertips. While the notion of “HOME” may be a source of comfort and pride to all of us, it seems to me that the concept does not equate to the stability that prior generations likely felt about the homes they worked so hard for. Travel was less available, hotels a thing for the privileged; the home was the center of their universe. Further, the younger generations of today seem to be more open minded and flexible about “moving” in general. Could this possibly be another reason that our parents’ generation seems to be so stubborn when asked to consider any form of alternative living? Does it reflect a sense of personal failure (a betrayal of the “home”) in addition to the overwhelming loss of control anticipated from a move to a community setting?

Whatever the reason, the reluctance of the older generation to accept help or make a change seems to be a tremendous source of frustration to their children and often leaves them with the angst of having to figure out how to care for parents in an environment that poses safety concerns in a variety of ways. Sound familiar??

In my blog “A Guide to Navigating the Geriatric Maze,” the spot entitled: Introduction to Care Setting Options for Seniors describes Assisted Living as:

communities that provide aging individuals with a safety net of services to support activities of daily living. Residents in these communities have a wide variety of needs that can be addressed along a continuum of care. It is important to note that some assisted living communities provide a “social model” while others are more “medically” oriented. Most have registered nurses on staff who can provide ongoing evaluation and support with ambulation, medication administration, treatment, and basic care for such things as blood pressure monitoring, diabetic management and other health issues. Licensed practical nurses (LPN’s) and nurse aides are usually on staff to help residents maintain as much independence as possible. Communities differ in the amount of nursing coverage provided; some have 24-hour coverage, while others will have nurses on staff during weekdays.

Apartments in these communities are built with senior safety in mind; most have walk-in showers, safety rails, pull-cords, and ease of navigation. Three meals a day are provided; special diets may or may not be accommodated. Limited local transportation is usually built into monthly fees, as are utilities, housekeeping, and laundry services. Organized activities are scheduled throughout each day and cater to a wide variety of interests.

I suppose what this doesn’t clearly delineate is how Assisted Living Facilities have evolved into the showcase communities that they actually are today. Assisted Living may be perceived by aging adults as the “last stop” if you will, the place to go before one passes on. Inherently, in the “last stop” there is a bleak undertone — one can’t conceptualize that these communities can actually put enjoyment, enrichment, engagement, and energy, back into the life of an aging adult. Many who conceptualize “assisted living” as the “last stop” will never actually get to observe the richness of such communities because of their pure reluctance to even have a look; so perhaps the inaccurate picture is perpetuated.

So, just what can we do to make the simple concept of Assisted Living more palatable to the current older adult? Unfortunately, I don’t have any magic answer. For the client I described above, I sat her down quietly in the presence of her daughter, and gently described what today’s Assisted Living Communities look like. In the matter of semantics— I am always mindful of using the word community rather than facility since Assisted Living buildings today are most often robust places, where people live in their own apartments in settings that offer a variety of beautiful indoor and outdoor spaces, gourmet meals with lots of choices, opportunities for new friendships, Bridge and Canasta, supervised exercise, movies, crafts, trips, happy hours, and varying degrees of nursing and medical support as a “security blanket.” All things that actually enhance independence rather than limit it. But despite my description, some have their pre-conceived ideas, and will find the very reasons why it’s simply “not for them.”

After speaking to my client at length to get a thorough understanding of her medical history, her philosophy on life, her likes, and dislikes, I selected three communities that I felt would not only meet her needs, but where she would fit in with the other residents comfortably and thrive. And I reassured her that none of the communities resembled anything even close to a Nursing Home setting. I scheduled visits for my client and her daughter, and asked that the Executive Directors, recreation, and nursing staff be available to say a quick hi. I asked that the communities also introduce a resident or two who shared similar interests and background to that of my client.

When I met them outside the first community, my client was visibly shaky and at my simple, “Hi” she began weeping; her daughter followed with her own tears. I had them take a deep breath, reassured them, and suggested that we “simply look.” Both were quiet for the first 20 minutes, and our very warm and energetic community relations tour guide did her best to engage them. I began to get a sense of ease as the mother asked some questions, and looked around. Yes, it was clearly foreign, but she certainly was surprised about how lovely the community was— no odor, no darkness, no visible hospital beds. Rather, a vibrant building with older adults who all appeared to actually be happy!

The second community visit seemed to be a turning point— no tears were shed, and both mother and daughter appeared much more relaxed; the mother was engaged, asked questions, spoke to multiple residents, and at the end of the tour actually said, “There is so much going on here. I think I like it.” We had a candid discussion about what she observed and how she believed she could be happy there.

At the tour of final community, my client actually had a smile on her face, took the initiative to ask questions of staff and residents, commented freely on the surroundings, and talked about how she could engage in what she was seeing. I personally felt a sense of relief, and happiness, that the process had a productive outcome, and that I could have—in a tiny way— “demystified” the alternative living environments that I work so hard to promote.

Now, I do acknowledge that while this was a successful ending to a difficult case (my client chose a wonderful community that she felt connected to and that could meet her needs), they don’t always end in this way. But, the one thing I believe for sure is that we have the best chance if we can provide credible education about choices, personally visit those choices, ask pertinent questions, and truly understand the needs of an individual. Additionally, I want to emphasize that every community is not right for everyone. It is important to find a resource that can delineate the differences between them, and isolate the ones that are a good fit for you or your loved one.

One step at a time….

Stay Well!

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