by Jennifer Belgum
Does your job require you to wear a panic button? Mine does. Working in healthcare in a locked dementia unit, I deal with the stages of Alzheimer/dementia patients daily. We just have to constantly adapt to whatever reality each individual is currently in and try not to become jaded by it. There seems to be four common stages of Alzheimer/dementia that I encounter most frequently: the “lost souls,” the “perpetually sad,” the “fighters,” and the “inevitably aware.”
I punch in the code to enter the unit where I work, just as I have so many times before. It doesn’t work so I try again thinking I hit a wrong button. No good. Then I realize the code probably has had to have been changed due to a resident figuring the sequence out. This happens every couple of months and has apparently happened again in the last twelve hours since I was last here. Residents may hover around the entrance doors and try to watch you put the code in. They think that’s what they’re supposed to do, come and go just like everyone else they see doing it. Sometimes a family may come in and inadvertently say the code out loud when leaving. People often do not realize the importance of a secured unit and they think that the people who live there do not understand anything. These folks are still people. They are someone’s mother, sister, father, wife, etc. and they are here for our guidance because they have lost their way and can never gain it back. It’s not their fault. It’s just the hand they were dealt.
Upon my entrance, I’m immediately greeted by an anorexic looking little old lady who walks up and down the hallway over and over. Probably the culprit for the code change this time I deduce. She does lap after lap exclaiming, “I’m exercising. I’m gonna be going home soon you know. I came up here yesterday for the dance and they tied me to a chair and kept me here. That doctor tried to have his way with me last night and as soon as I get home, I’m gonna get a lawyer.” There is no reality orientation with her. She’s oblivious to the fact that she has been here for several years and is not a candidate for discharge. She is a “lost soul” who can physically function, but mentally she is at a loss. Lots of confusion surrounds this stage. To them, what they are saying is very real and you cannot tell them otherwise. However, what they say is also way off in left field and can make for a very interesting conversation. She is very high functioning and can dress herself and brush her teeth and remember how to do all the basics but her mind is so deluded that her dreams and stories that pop into her head at any given time are her reality.
I reach our little office at the end of the hall just as I hear “somebody help me!” I know exactly who is hollering. The same routine occurs every morning. I go straight to the room with the sobbing. “Oh kid, please help me, I can’t get out of bed and I have to use the bathroom. My baby’s crying and needs fed and I don’t know what to do or what’s going on” she cries. The cutest little lady you would ever see with enormous green eyes, always filled with tears. She is one of the “perpetually sad.” No matter what you say or do, they will be crying. A rare glimpse of a smile is truly cherished. You cannot pinpoint the trigger. That is just their response to every situation. They can’t process their feelings any other way.
Two minutes later I hear the familiar beep, beep, beep of my pager calling me to yet another situation. This time it’s a gentleman. I enter his room to find a staff member backed up in the corner and he is blocking her way with his arm drawn back and hand in a fist ready to strike. I get to them just as he’s connecting with the side of the staff members head. All the while screaming “God Damn It! You don’t tell me what to do!” I step in and try to deescalate the problem. Not without him landing a blow or two to my right shoulder/chest area, knocking me back into the wall and taking my breath away. Something catches his eye. It’s the cat playing in the corner of the room, and just like that, he has forgotten everything and isn’t angry anymore. “Here kitty, kitty” he dotes. Well, an animal lover and the cat saves us, this time. This fellow is a “fighter.” He was a professional boxer back in his day. To me, that explains everything about his combative behavior. What else would you expect? He definitely knows how to throw a punch. You have to be very aware of this stage. Some are too frail to have their aggression cause you any harm, but some could do some damage.
Not long after, I enter a warm, sunny room. A short, gray haired woman stands rocking side to side in front of the window. She turns and greets me with a smile and says “You know, I see you girls bouncing up and down the halls, so busy, so full of life and then I look out the window to where the courtyard should be and I see a train zooming by. So close I could reach out and touch it and I know that isn’t right. There’s no train there, yet, I see it just as I see you right in front of me now. You know, I have the Alzheimer’s disease. It’s a terrible thing to catch. Soon I’ll be off somewhere in my mind permanently I fear. This woman is the “inevitably aware.”Aware of her surroundings and the day, the year, the President, etc. Aware that she has a disease of the mind. Aware that it distorts her vision and sense at times. And painfully aware that there is nothing she can do about it and it will get worse. This stage, to me, is possibly the worst of them all. Complete loss of control of their life and they have to watch it happen. They can’t fix it or cure it. It’s just a slow torture until they cross that invisible line into complete absence.
Everyone in the unit falls into these categories or are free falling in between while morphing into the next stage of the disease. You never know what’s coming next. Maybe the “perpetually sad” will become the “fighter” or the “fighter” could become the “lost soul.” It happens relatively slowly. We can see the change over several weeks, usually, as their disease progresses. For us, as staff, it can be intriguing, sad and shocking all at once. This disease shows you just how precious our minds are and to not take for granted the memories we have made because we see how quickly some souls slates have been wiped clean.