Alzheimer’s and my role as imaginary “Doctor Ed”

I just hate alzheimer’s disease. It is probably not the best way to start my writing, but why sugarcoat my very sincere feelings?.. So I will repeat it again – I really hate alzheimer’s disease. I know there are multiple forms of dementia, but society knows alzheimer’s best and it is common to call dementia just alzheimer’s.

I have a few stories to tell, but in this article I will share some of my training, some of my work as it relates to dementia and I will tell you my personal story of becoming an imaginary “Doctor Ed”, only if for a short moment.

Because of my work I have been always very closely involved and very compassionate towards everyone who has been diagnosed with ALZ and had daily interactions with the families involved in caring for their loved ones with dementia. Throughout a decade of my career I have been responsible for the safety and comfort of the dementia-diagnosed population living environment as I have held multiple positions in the field of assisting living facility management. Very early in my career I have nearly single-handedly managed the project of retrofitting part of the building into the dementia unit. It was very interesting work and a massive learning curve achieved. Throughout the years I took part in multiple projects of enhancing the safety and living conditions for the dementia residents. From the facility management standpoint I have supervised wings and entire floors of the safe havens that had multiple creative names like Harbor or Reflections. But sometimes my job was beyond my job description; and these moments made my work so much more rewarding than the direct responsibilities held. These moments helped me bond with my coworkers and provided unmeasurable professional experience, also helping me to leap forward in my personal skill development.

Calling Doctor Ed!..

People working in the safe haven wings really are very special. The teams try so hard to create the most positive atmosphere with ambient music, songs, meditation, special foods, activities and so much more. But it is not always possible to get it done in the conventional ways, and truly there is no one pattern for managing situations in the dementia units. While there are guidelines, it is common industry knowledge that safe haven resident care teams have to improvise. For that reason more than once I was asked to pretend I was a doctor (Doctor Ed) when the resident was demanding a male doctor to tell her she would be ok. There were times when our all female resident care team had exhausted their options and simply could not win over the trust of the alzheimer’s unit resident who was becoming really anxious and agitated. It was a logically developed redirection method, a “play” of sorts to help the resident when the care director knew the resident was going to relate to the male “doctor” and his advise much better.

I would come in and get prepped by the team, I would be provided guidance on how to approach the situation best. I asked questions about what the agitation was about and how to best approach the topic. This was so serious and the same time we had to use “play” to resolve the difficult position everyone was placed in. We were creative and professional, we were wishing well and striving to balance the emotional rollercoaster our residents were riding. Dementia is so freighting to those who have it because the perception of reality becomes so far from the true reality itself. When the fear of not remembering or sometimes not knowing anyone around you is so paralyzing, when the surroundings are foreign and those new feelings of the unknown are baffling. When time is warped and the today becomes lost in the timeline. And it is only natural that sometimes the dementia resident would simply lose any certainty of where they were, start to panic, not believe in those trying to reassure them. It is terrible. It is so hard to watch but we had to be in control.

In some of those situations my role was to help the resident feel calmer and gain more confidence in the rest of the team, so they could do their job. The scenario would be really simple and truly rather complicated at the same time. Simple because of the role I played. And complicated for the same reason – again, because of the role I played. My “acting” could fix things or destroy any leverage the resident care team has built up with the resident. If I messed up and lost control over the situation, the resident’s feelings could spiral and lead her into the panic. If I succeeded, everyone’s day would turn to a more positive one, especially for that wonderful person who just did not know who they were anymore… So sad, so hard to see, but the job had to be done.

After the coordinating of our effort and brainstorming with the team about how to best approach the situation, I would walk over and see the resident who was looking to speak to a male doctor. Here I am, coming in with my heart pounding into Judy’s apartment, but with the smile on my face and saying “Good morning Judy, I am Doctor Ed. I am being told you were asking to speak to a doctor.” Then there was always a look. An analyzing look sizing me up from head to toe. Is he a doctor? If he is, is he a doctor I want to listen to?.. Does he know what he is doing?.. We did not have doctor coats for these situations nor we could wear them in the safe haven – it would had been just way too much, in the dementia environment because it could confuse the remaining population around if I walked-in wearing a white doctor’s coat. So I had to convinced her I was the doctor by just telling (and looking like!) I was a doctor. I had to get into the role by simply thinking at that moment that I really was one, and envisioning what the real physician would do if he was here. And my confident Doctor Ed look (with my heart beating hard!) was the factor that was the winning formula. The deep look into my eyes was always the difficult part, because this was the moment of the truth – did I pass for a real doctor?. I would continue smiling and try to look relaxed and confident. Then for the moment, the resident and I would maintain the eye contact – and I better do not look away. If I did, I would fail and cause so much more anxiety to her. So here I was. Repeating to myself, I was a doctor, and a good one, I was getting into the character. It was never a movie scene, but that might as well had been – a movie of sadness that we had to do this, but also a movie of compassion and love for one of our own. Our own not only in terms of staff and resident relationship, but rather our own as in another human being. Our own, who had fallen into the trap of dementia and we know, given there is still no cure, she will never get out of it. Our own who we as the society had failed to save from the ambush of this terrible hateful disease attacking the brain cells. Did we ever have a chance to save her? None of us can be guaranteed this viscous attack on our own brains will never happen. I really really hate alzheimer’s disease..

Back in the apartment with Judy just a few seconds of her looking into my eyes could feel like a long minute when there’s so much at stake in that moment. I knew it was a success when the resident would then look away and lower her head, and start telling me why she wanted to see me. Me, the male doctor, Doctor Ed, who has no medical degree in cardiology or cardiogeriatrics, but who has the heart that wants to do something good. This moment was the one where the entire group could breath out the sigh of relief. Our play born out of compassion worked and the situation was now defusing quickly; the resident was getting relaxed and less agitated by the second. The “doctor consultation” conversation could now start and the harmony returned to the alzheimer’s unit. If only for the moment, our efforts paid off because in Judy’s mind she was talking to the male doctor she was demanding to see. The wish was granted and the “man in charge of those nurses around here” (as she described) was finally here. And this man was ensuring her that those nurses were very good at their job and they could be trusted… That it was ok to take the medication they were passing or go to the activity room with them, or follow them to the dining room. For me personally, it always was a small victory, if I succeeded in my role as Doctor Ed. We knew we saved hours of effort to defuse the situation this way, we helped our wonderful resident to get more comfortable in the setting of the safe haven wing and our daily assignment was closer to completed. If Judy’s peaceful consciousness and spirit only lasted for one day it was well worth it to us. We will do this again if we have to and if nothing else works. Our mission was always the same – to do whatever it takes to encourage the resident, help her be reassure that everything will be ok and as professionals we were showing support the resident care teams.

After the conversation with the resident which could usually last up to five-ten minutes, I would leave the safe haven unit and go back to whatever I was doing in my building role before I was paged as “Doctor Ed”… I would sometimes walk away still “in my role” mode and feeling how awesome it could have been if I had a medical degree. If only for five minutes I would be able to entertain the idea of me being a real physician pretty vividly, because there is a personal angle to this. You see, my grandmother Maria’s wish was for me to become a doctor. Don’t so many grandmas wish that upon their grandchildren?.. When I was little (maybe four years old) she said I would be a really good doctor. Her telling me this is the only real memory I can recall of my grandmother Maria. I literally can’t remember much of her presence in my early days of life, but through the circuits of my brain I do remember her wishing for me to become a doctor. I also remember she died, weeks or months after that conversation… But decades later, my play of the doctor for the alzheimer’s resident meant to me that maybe just for a moment, in my fantasy, in my own mind holding this one vidid memory of grandma Maria, even just for five minutes her wish upon me came true.

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