Eighteen months ago my mother-in-law’s (Dixie) husband (Don) passed away very unexpectedly. They lived in a three story home in Laguna Beach, CA for fifteen years and were able to walk around town and go to the beach and their favorite restaurants, and see movies among all the other activities they loved to do. And Dixie volunteered some Saturdays at the Women’s League Thrift Store. They were truly living their golden life.
The Phone Call
It was a Thursday in May when I got an early morning phone call from Dixie. I immediately asked if everything was alright and she said no, Don had died and that she was at the hospital. My husband and I jumped in the car and were at Dixie’s side in two hours. Upon our arrival, it became clear that she was mistaken. Don had not passed away; he was comatose due to a brain blockage.
That day became one of the longest days of my life because of the horrible circumstances surrounding Don’s death and because Dixie’s diminishing mental capacity became very apparent. She could not remember what happened or fully comprehend what was happening in the ICU. Every hour she would ask me if there was a change, if he was better, when they could go home. And every hour I would tell her no, he was not better, and that he would not be going home. This went on until Don’s sisters finally arrived at 11 PM and he was taken off life support and passed away just after midnight.
There were signs and symptoms leading up to this event and even a confirmed report from the doctors that Dixie had dementia. There were instances where she was unable to remember how to get home from a routine walk to the downtown area and Don had revoked her driving privileges because she was struggling to remember how to get to and from places. Routine activities at the house, like laundry, dishes, and general cleaning, were starting to slip. Dixie and Don didn’t remember buying things and common goods like olive oil and saran wrap were piling up. Their eating habits had changed, mostly to ice cream and wine, and nothing was being cooked or thought about when we were visiting on weekends.
My husband and I were talking to them about downsizing because of their age, Don’s general health, and Dixie’s seemingly worsening dementia. After many months of convincing them and, I believe, Don’s growing inability to anticipate Dixie’s increasing symptoms, they finally agreed to look at senior living facilities where they could live out their golden years together with additional care as needed. The plan to go and see some of these places had been set up months in advance and were scheduled for the week after Don’s passing.
The Challenge Of Finding The Right Place
Immediately following Don’s death, we stayed with Dixie in their home to comfort her and because it became very obvious how much we didn’t know about her inability care for herself. Reality set in so fast that we quickly understood Dixie would not be able to remain at home by herself and that we were now faced with the sudden challenge of finding the right care environment for her. None of Dixie’s children or their spouses were able to provide the kind of care that a person with Alzheimer’s or dementia needs. At one point Dixie decided to make cauliflower and left the pot on the stove, burner on, no water or cauliflower inside, potentially burning down the house had someone not walked into the kitchen to find her disoriented in her own home, the “cauliflower” forgotten.
Anyone who considers it insensitive to put an elderly family member into any kind of long-term care or assisted living facility should rethink this. For us, our lack of understanding of how to care for someone with dementia could have easily caused Dixie more harm. When you are not trained to care for or anticipate the needs of a loved one, long-term care and assisted living facilities provide a safe, secure place that offers twenty-four hour care, food service, monitored outings and events, and activities that keep the body and the mind active.
Our search for long-term assisted living began that summer.
There are many things to consider when searching for the right place for a loved one who has Alzheimer’s or dementia. Consider the following:
Some places have all the right in-room amenities but the facility cannot secure the perimeter. In our situation this was not suitable since Dixie has a history of getting lost.
The step-up care from independent living to assisted living to memory care is not clearly defined. We had to consider that Dixie is coming from what she thought of as completely independent living, not realizing how much assistance she was getting from Don and then her children.
The range of options is incredible. You really need to do your homework and ask a lot of questions:
What type of meal services are provided?
What about medication management to make sure everything is taken
at the right time and in the correct dosage?
How often will they clean the unit?
Is there medical staff on site 24-hours?
The Cost Of Care Increases With Each Additional Service
If you wait until your loved one has been officially diagnosed with Alzheimer’s or dementia, the price almost triples compared to what it costs for those without. According to an article in seniorliving.com the average cost of long-term care/assisted living in a one-bed unit is $3,800 a month depending on the level of care and medication management. This does not include all the additional fees for medical management and memory care classes that can be an additional cost of up to $12,000 per month.
Comparatively, the cost to stay in a hospital at an average of $30,000 per stay, the hospital stands to charge $10,000 per day on each stay (healthline.com). And here-in lies the problem with designing long-term care facilities. There is such a great disparity in the return on investment between designing and building acute care vs. long-term care ($10,000/day vs. $10,000/month, respectively), that I believe we will have to start making our own plans to change the future of long-term care. You cannot compare the two when it comes to “doing what is right” vs. just doing. And if we do it right, we should be able to make them affordable and avoid costly hospital stays.
Redesigning Our Golden Years
I deeply felt Dixie’s transition from her home to her new home. Would she have been less resistant if the environment was designed more like the Four Season’s with well-appointed high-end furnishings and crystal chandeliers? Or if the scents and air from the Midwest, where she grew up, and more familiar to her once younger senses were infused in her room?
At NBBJ, our own Neuroscientist, Dr. John Medina, says that our strongest memories are from the ages of 18-22. For me, that means that when I am eighty, I will best remember the music from AC/DC’s Ball-breaker Tour, Morrissey, and Depeche Mode, and the aromas of freshly baked pepperoni pizza from my first restaurant job. I’ll want to watch Pretty Woman, Pretty in Pink, and Sixteen Candles…shouldn’t we start planning for that today?
All of the research I did for Dixie made me think about my future. My husband and I have no children to help us make these decisions. We may have our own physical or mental ailments that make it difficult to choose what is best when the time comes for outside help and care. I half joke that the day I am eligible I will buy into one of these new long-term care communities so that I get the best deal and can enjoy my own golden years! We both enjoy the arts, not necessarily art museums and theatre but more along the lines of rock and roll bands, edgy documentaries, sports, even!
We can’t be the only ones who would consider a long-term care or assisted living facility designed around our own personal life experience. In my case it would have well-lit music halls that allow cover bands to come and play the music of my era, the music that I will remember when I’m eighty, and some sort of theatre for plays and movies!
As planners and designers, we need to design residences that integrate all our human physical needs with what we want to personally experience as we get older at a cost we can afford. We see the changes in hospitals turning more toward hospitality where a patient can customize the environment in their room. Let’s bring personalized hospitality to our golden years through flexible planning and new designs How about rock and roll camp for the ageing! Let’s make it someplace Mick Jagger would want to go.
I wouldn’t mind my view from the penthouse looking down into an amphitheater with a rock and roll band playing my favorite AC/DC songs! Build that and I will come.
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