I wish my last patient goodnight, as I feel my phone vibrating in my pocket. As quietly as possible I turn off the lights and close the apartment door. Out in the hallway, I see a text from my boyfriend, saying he is here to pick me up. I quickly grab my things and say goodnight to my co-workers as I leave the building at 11pm. Getting into my boyfriend’s car, he doesn’t even get the chance to say hi to me. I immediately start going on and on about my day at the retirement home. The whole 20-minute drive back home he couldn’t get a single word in. I work at a retirement home with dementia patients. At work, I have experienced funny moments, disgusting moments, sad moments but mostly very beautiful ones. This means, no awkward silence on the way home, because every day I have over ten new stories to tell about what happened at work. Whenever I tell my friends, they say I should write a book about my job. I have not found the dedication for that yet, so for now I will write some stories for the HUB website.
Before we dive into this article, I want to give a couple of disclaimers. First of all, dementia is a terrible disease, which unfortunately we see quite often. There is no cure for it, and it is currently the 7th leading cause of death among all diseases worldwide. Dementia is not only memory loss; it can also be a lot more and it comes in different forms. It can mean mood swings, being confused about time and place, difficulty recognising objects, and difficulty performing everyday tasks. The purpose of my job is to let these patients enjoy their final time as comfortably as possible. I will be sharing a couple of remarkable moments that I have experienced with patients I’ve worked with. Out of respect for the patients and their families, I will not be using real names or mentioning where I work. This article is in no shape or form meant to make fun of any of the residents, but rather to show you that even with dementia, these people can still experience beautiful moments.
A couple of weeks back I was taking this very kind lady to go shopping, we’ll call her Carol. She comes from a wealthy family and has always loved going from store to store. The home I work at receives money from the families of patients, which we are allowed to spend on them. So, I grabbed some of her funds and took her out for the day. Going through the shops, I can see Carol lighting up. She keeps telling me how much she loves shopping, and how many options they have these days. We go into a store, where she grabs a couple of things. Carol has her own wallet; she has always had one and it would only make her stressed if she did not have money on hand. However, as I have mentioned before, a sign of dementia is not recognising everyday objects, this includes money. As we walk up to the cashier, Carol takes out her wallet. I offer to pay a couple of times, but she does not want to hear any of it. Looking behind me I can see a line of people forming. The art of my job is being patient, even if that means that I have to hold up other people. Meanwhile, Carol is confidently putting napkins on the counter to pay with. The cashier looks at me confusedly. To not make Carol feel embarrassed I tell her that it is not enough to pay with. She looks through her wallet and presents some pieces of a torn apart 20-euro bill. The cashier looks at us even more confusedly as I slip her the money for the groceries without Carol noticing. Once back in the home, Carol is so excited about all the things she bought, that she can’t stop showing them off to everyone.
Another patient I would really like to talk about we’ll name Peter. He is probably one of the most wholesome people here. He has been through a lot in his past, but he is always kind. Peter is in one of the final stages of dementia, he can barely recognise anything, has a lot of trouble holding a conversation and understanding his surroundings. To give an example, when you put a plate of food in front of him, he can get very upset. The reason for this is because he does not know what to do with it. He simply does not recognise the feeling of hunger and does not understand that food is meant to be eaten. The beautiful thing, however, is when you put Peter in front of a piano, he will just play songs from the top of his head without a single mistake. If I sing him a song, one that he does not even know, he can play it just by listening to my terrible singing. Hearing him play and seeing how it totally calms him down might be one of the most extraordinary things I have ever experienced.
While that is very beautiful, there are also a lot of moments where Peter really makes me laugh. One time I was serving him a cup of coffee, when he grabbed my hand and asked me to sit down with him on the couch. I sat down next to him, he looks at me and says: ‘I have to tell you something, and it is not going to be easy.’ I have learned to always go along with the patient’s reality, so I look at him with concern and ask what’s wrong. ‘I think you are a fantastic woman; I have had a great time with you, but I don’t think we can continue any longer.’ I ask Peter what he means by that, to which he replies: ‘It means I want to break up with you. I hope we can still be friends.’ For a second, I did not know what to do, I just got dumped by my 88-year-old boyfriend. I just politely tell him that I respect his decision and would still like to be friends. Although my heart was obviously broken, I think there might still be hope. The next day when we were playing music in the common area, he asked me to dance with him and we slow danced for the entire song (which is long for someone who normally uses a stroller). When I got to work again the next week, he looks at me and says: ‘I know you, we danced together last year’. I know he got the time wrong, but I was very impressed that he remembered us dancing, which implies it must have meant a lot to him. Maybe one day we can get back together.
Describing my job like this makes it sound very easy, as if I just hang out with some old people all day, I go shopping, listen to music, and get paid to do all of that. However, there is a lot of responsibility that comes with it. Patients can be in good moods, but also in very bad moods. They can even be aggressive. It’s a hard job and it can make you very emotional. Mostly I try to see it as something beautiful. Knowing that I was able to make someone’s day even a little better means a lot to me. I could tell a hundred more of these stories, but I am ending it here for now. I really hope that this made you laugh a little bit, but also informed you on what dementia can look like and that it is not just memory loss. And who knows, maybe I’ll share more stories in the future.