Caring for fading memories
Her memories are a patchwork quilt of reality and hallucination...
SUN CITY CENTER - As the enormous population bubble known as the Baby Boom enters its autumnal years, memories will begin to fade in great numbers. Dementia is one of the world’s fastest growing diseases — in 2011, an estimated 24 million people suffered from it worldwide. By 2040, during the last years of the Baby Boom, that number is expected to leap to 84 million people. It is a disease that few people want to talk about but before long, there may be no choice. Caring for people with Alzheimer’s and other diseases with dementia will simply be a problem too big to ignore.
Sun Towers in Sun City Center has chosen not to ignore it. On April 26, Eileen Poiley, Educational Coordinator at the University of South Florida Byrd Alzheimer’s Institute, began training Sun Towers staff members on issues involved in working with people with dementia. On May 16 from 5 to 7:30 p.m., Sun Towers will hold an open house for the new memory care unit that will soon open at the assisted living facility.
“Our goal is to have the most cutting edge memory care available in Sun City which is why we have teamed up with USF,” said Debbie Caneen of Sun Towers.
Memory care is more than simply warehousing old people who may appear to be losing their minds. The staff learned how to understand their patients better, and even learned about emerging methods for preventing the problem in the first place. As a population, elderly victims of dementia are arguably among the most vulnerable.
Gloria’s long hair is mostly gray but shines blonde in the light like it must have been at one time. She smiles and says hello — or something. It’s difficult to know because the words don’t come out like she thinks she is saying them, but the look in her eyes says hello. That is enough. Gloria has no idea what day or year it is. She probably has no idea where she even is but frequently, she wants out. Not because it’s a horrible place — on the contrary, the memory care unit in which she lives is a beautiful place and the staff is caring and attentive. Every possible effort has been taken to avoid the appearance of a hospital or nursing home. Every possible effort has been made to make it into a home. But the doors are locked from the outside.
Gloria isn’t a prisoner; she is a victim of a disease that has wreaked havoc on her mind. Her memories are a patchwork quilt of reality and hallucination. The doors are locked for her safety because the outside world isn’t accommodating for those who struggle with diseases of the mind. She can walk out through the locked doors at anytime in the company of her family, friends or a staff member. Just past the doors and down the hall is a hair salon and her beautiful hair suggests she is a regular customer. For the most part, however, it is up to her family to determine how often she can leave. Sometimes she doesn’t want to leave and other times she sneaks over to try the door by herself, not even noticing the electronic keypad on the wall.
The residents of this out-of-state memory care unit are definitely not prisoners, nor are they seen as such by the staff. Seeing Gloria try to find a way out is no doubt heartbreaking for them. Being cursed at and accused of anything and everything from the dementia-fueled paranoia must certainly be difficult. But they don’t take it personally. Gloria and her fellow residents aren’t trying to escape their care so much as they are trying to find a way out of the prison that Alzheimer’s and other dementia diseases have built in their minds. No matter what has happened to her memories, Gloria knows what life used to be. She hopes in vain that it is just outside of the locked door.
It takes a special person to care for those with fading, patchwork quilt memories. USF’s Poiley faced those who would soon become those special people at Sun Towers. She explained to them how to communicate and how to appreciate that the patients’ reality may be far different from the reality of the staff member, but it is their reality nonetheless. She covered assumptions and behaviors, including minor things such as the time of day.
“An Alzheimer’s patient will have absolutely no concept of time,” she said. That matters because day after day, staff members will have to remind the residents that it is time to get dressed or to have lunch. Residents may be able to recall an event from 1975 with crystal clarity but they won’t remember what time dinner is served.
Even the most minor things can have a big impact. Poiley talked about the huge difficulties encountered after one facility simply changed the style of doorknobs used on the residents’ rooms. Such a simple change, so easily taken for granted, can cause confusion and even fear from those suffering from dementia.
And through it all, there can be no frustration on the part of the staff because, as Poiley went on to say, “If they can’t store the memory, you can’t expect them to retrieve the memory.”
And then there is the matter of family. For the resident of a memory care unit, the staff sees them most and it is the staff that is left to deal with the fallout of family visits at times. No matter how well intentioned they are, family members are sometimes misinformed about the disease that has claimed their parent or relative. Sometimes there is simply sadness from the resident when a family visit ends. In the end, though, it is the staff that will be there to help make things right again — as right as possible, at least.
Poiley discussed everything from reminding residents of staff member names and offering reminders of where they are to being constantly vigilant of the environment around them. Those suffering from dementia will often assume the emotions of the environment around them. Thus, a television playing in the background or a distraught visitor both carry risks of which the staff must be continually cognizant. She talked about hallucinations, paranoia and even aggression on the part of the future residents. The staff has to be prepared for it all, and all the while to handle it with a gentle and understanding heart.
The next day, Gloria is trying to turn the doorknob that leads into a utility closet; perhaps the life she once knew is in there. It isn’t, of course, but that life is still in her eyes and the care she receives still shows in her glimmering hair. She has the now, and that is important. She is someone’s daughter, someone’s sister, someone’s mother. She deserves the best even if she doesn’t understand it all. She turns, smiles, and says hello — or something — and then walks down the hall.
Farther down the same hallway, an elderly couple walks hand in hand towards their room. More likely, it is the room for one and the other is just a visitor. But in that moment, Gloria smiled, and that couple was hand in hand. In that moment, there was happiness. Those are the moments where memories are made. In a memory care unit, such as the one that will soon open at Sun Towers, memories are still being made and then made again because they may quickly fade. It is a place that allows for such things; it’s a place where moments matter. It is a place where Gloria still smiles.
For more information about Sun Towers, visit www.SunTowersRetirement.com. For more information about the USF Health Byrd Alzheimer’s Institute, visit alz.health.usf.edu.