The sun looks really beautiful today. I actually feel warm for the first time in a while. Oh no! Adele is eyeing me, well I am sorry but I got this chair first and I am not giving it up! I have not had a spot next to the window for a week. Hell, I am unable to even remember the last time I was able to wake up this early – I only wish they could give us more than this sludge. Oatmeal, unflavored, as if they are afraid that we will choke on a little cinnamon. Oh man, I remember that one brunch I had, when was it? Wait … it was when I was on tour with Eddie … or was it Rafe? Rafe was married to Shirley, I think Shirley did end up going to Massachusetts for that convention. I wonder how Susan is, I miss her too, I think she just had a baby boy. Or was it a girl? It was a girl. An adorable little girl. I do not know why anyone bothers having a boy. Too much trouble. Little girls are the best. Anyways, what was I thinking about? Right, the game last night, why does Nigel insist on cutting his food into little pieces, it makes it so hard to eat while watching that. You know, I wonder if –

“Mr. Smith? Hi, this is Rowena from Wild Acres, remember me?”

Whoa, who said that?

“Mr. Smith, hello, hi, remember me?”

I am not —

“Mr. Smith, I just came and visited you two weeks ago, did you forget that?”

Who is this? I do not think I know her. Who could she even be? I have never seen her around the facility — maybe she is just one of the background staff? Wait, she has a badge. It says “Wild Acres” … right, that is the hospice. Oh, of course, she works for the hospice. She said she came and visited me before, but I do not remember her. When was that, Tuesday, Wednesday? Wait, I think someone did come, I guess it was her? I wish I could remember, I guess she looks vaguely familiar. Oh, what do I know? Oh my god, she has been staring at me this whole time; she must think I am an idiot. I mean, it must have been her, right? 

“Yes, of course, I remember you, Rolan–, I mean, Rowena. Right.”

“Okay, great, so I just have a few questions to ask you as part of our monthly check-up. Is that okay?”

Right now? I am a little tired though and I do not know if I have it in me right now to talk to someone. She looks a bit hurried. She probably has lots of other people to talk to. I guess I should just do this.

“Sure, that sounds fine.” 

“First of all, have you been in pain at all?”

Where do I start?

“I mean, I guess I have had some pain, cramps, aches and stuff like that.”

“Okay, are any of those unrelated to your current condition?”

My current condition? I have no idea …

“Um, what do you mean?”

“I mean, do you have any new pain that is not related to your illness?”

I do not know, what would that be? What pain is considered normal? I guess the pain is normal: wheezing, stomach cramps and headaches are nothing new. I mean, they have gotten a bit worse but I am getting older. Maybe I am also getting sicker, that could be a reason. I know Leslie has to get new pain medication almost every month, she is really sick. Nothing like that has happened for me; I mean, I do need new medications now and then, but not pain medication specifically. I am probably one of the lucky ones. She probably means something important, like have I started throwing up or getting a hernia or something like that. Oh no, she is looking at her watch, am I taking too long? I guess there is nothing important. 

“Nope, nothing like that. I mean, other than the usual stuff.”

“Okay, perfect. Have you been eating and drinking properly?” 

“Well, I have been eating the food that the nurses give me.”

“Are you getting full nutrition with those meals? Carbs, proteins, fats, vegetables, minerals, things like that?”

What kinds of foods have minerals? I think that is the stuff that goes in rocks? 

“Um, I am not really sure, you would have to ask the nurses about that.”

“I know, Mr. Smith, but I am asking you because you may not be eating all the food they tell you to. You might be skipping meals or maybe trading meals, so I have to ask you this to make sure I am getting information that is actually accurate.”

“No, no, I eat the food the nurses give me on time. I am always the first one in the dining area, and I always follow the schedule. Leonard and I are always the first ones there.”

“I am not asking if you follow the schedule. I am asking you if you are getting proper nutrition, if you are eating the right foods.”

“I … I do not understand, I mean I have been eating the meals that they have –”

“Mr. Smith, I understand that, but could you answer the first question I asked you, please?”

What was the first question she asked me? I do not know what she wants from me; am I answering the questions wrong? Maybe I do not understand her. Am I even answering her questions properly? Maybe I did this last time; maybe I have said something that was odd or that contradicts what I said then. I do not know, I guess the nurses know what they are doing.

“Yes.”

“Okay, thank you.”

Maybe I should lighten the mood a little, she seems a little upset.

“I even eat the food when it is hard to. They always give us oatmeal in the mornings, it is kind of bland though. I tell you, it is like they think we will choke over a little cinnamon or something. You know, sometimes I wish that –”

“I know the food may not taste good, Mr. Smith, but the nursing staff knows what they are doing. They are giving you food that is the best for you.

“Oh, okay. Sorry.”

I guess I was rude. I probably sounded like an ungrateful idiot. I guess I am being really impolite. I am just going to stop talking and answer the questions.

“Have you had any visitors?”

Any visitors? Susan came by sometime, and she brought a picture of her new baby. What was her name? How can I not remember?

“Well, Susan came. I think yesterday?”

“Who is Susan?”

“My daughter.”

What was her new baby’s name, again? She even showed me a picture. Yes, it was definitely a girl. She had a cute pink bow on, and the most adorable dimples, and a smile that could light your world up … 

She looked just like my Annie.

“Are you sure that she came to see you?”

Am I sure? What does that mean? Yes, of course, Susan was just here. She just came to see me, and she said she’d bring her next time. 

“Yes, she just came yesterday.”

“Mr. Smith, when I signed into the visitor’s log, I didn’t see her name there. Susan wasn’t here.”

Her name was not on the sign-in sheet? That is just not possible, I just saw her. Oh, I know, she must have just forgotten to write her name. That must have been it. She did come yesterday and she brought a picture of her baby.

“She must have just forgotten to sign in.”

“Mr. Smith, I talked to the nurses and asked them if anyone came to see you. They did not mention anyone.”

But I —

“Are you sure you got the date right?”

How could the nurses not remember? I know, they were probably just really busy.

“They might have just forgotten. Things were kind of busy here yesterday.”

“It is their job to keep detailed records about these kinds of things. I think you are remembering incorrectly.”

My Susan has not come and visited me? But … she was just here. She was sitting right here, and we were laughing over the picture of her baby. What was her name? I remember she had the most adorable dimples just like Susan when she was a kid, and they gave her the name of a princess. What was it? Clarissa? Camille? I think it started with a C … think, think! How could you forget? She just told you her name, try to remember. 

“Well, this is not as important, so let us just move on. Have you been feeling depressed lately?”

Depressed? 

“No, I am okay.”

“Are you sure? You seem really lonely and kind of sad. Are you sure you are not depressed?”

Am I depressed? I mean sometimes I feel sad. I was cold this morning and I miss Susan a lot and I feel lonely. Is that what depression is? Maybe I am depressed.

“I am not sure, I guess I could be.”

It looks like it is hard for me to even remember the name of my first grandchild. If that does not cause depression, what does?

“Okay, that is no problem. We will have someone stop by to talk to you about that a little later.”

Talk about what? The fact that I can not even remember my own granddaughter’s name? The fact that I cannot even remember when I saw my daughter last? The fact that the highlight of my day is getting to sit near the window? Is this what depression is? 

“Are you generally satisfied with your life?

What life? This thing I am living now? Spending my days waiting until I can go to bed? Realizing that I can not even trust myself? Realizing the one good thing that made me happier than anything yesterday may not have actually happened?

“Mr. Smith, could you answer my question?”

Having the knowledge that all the good things in my life may not exist, that every day is a reminder that yesterday was a little better? Is this really it? Well I am done, I am DONE! I can not DO this anymore; I just want to be done with everything! Why are my cheeks wet? I miss Susan and I miss her little girl, for God’s sakes, WHY cannot YOU REMEMBER HER NAME?

“Mr. Smith?”

“Yes, I am generally satisfied with my life.”

—

Why is it so hard for you to just remember?

—

“Anyways, that is all I have for today, I will have to stop by and talk to the nurses, and then I will see you later.”

“Wait, you said you met Susan, right? Did she tell you what her baby’s name is?

“I would not know that. It is not important for the survey, so do not worry about it.”

“Oh. Okay.”

—

What is the point? Every day is the same. Wake up, go to the bathroom, meds, fight to sit in front of the window, food, more meds, TV, food, meds, sleep. Every day. Unless Susan decides to come by. Was she even here yesterday? I do not know anymore. Maybe I forgot. Maybe she was never here. Maybe she does not have a daughter. Maybe it was Nigel who had a granddaughter, not me. Maybe I’ll never even see Susan again.

Adele is looking at me again, I guess she wants this spot. Okay, I guess she can have it. I think I’ll go lie down or watch TV with Nigel. Eat lunch. Watch more TV. Eat dinner. Shower. Go to bed. And do the same thing tomorrow. This is my life now, I guess. This is all it will ever be.

At least today will be better than tomorrow.

---

As a hospice volunteer, I remember my first meeting with a new patient I started visiting. It was a bright, sunny morning, and we sat by the window as we introduced ourselves to each other. He told me a little about his life and asked me some questions about mine, and it was all very pleasant. Of course, what he did not realize is that I had been visiting him twice a week for the last 6 weeks; he did not remember on account of his dementia. My visits with this patient were profoundly sad and even frustrating for me. It was hard to visit him twice a week and not see a single glimmer of recognition on his face every time I saw him. It was hard to see him struggle to remember the name of his wife and dog, and watch him break down into tears afterwards from the struggle. This was my first experience speaking to someone with dementia, and I was struck by how impactful this was for me and how much I learned from him. Ultimately, we all define who we are as people through memories — those we have of ourselves, our loved ones and the society around us. Therefore, in many ways, losing memory is akin to losing one’s sense of self. I started wondering how it must feel like to not trust your own memories and perceptions of the world, and how frustrating it must be to know in the good moments that they will occur less and less frequently. I wrote this piece hoping to get a glimpse into the mind of someone with dementia and explore what a gradual loss of sense of self might look like. In addition, writing this piece taught me patience, compassion and acceptance while giving insight into arguably one of the worst disease a person can be afflicted with. I hope that the people who read this take away the same lessons I do and better understand how important love and quality time can be for people with dementia to remember and fully inhabit the stories they created during their lives.

Image credit: An old woman covering her face by Danie Franco is licensed under Unsplash.