Description of the project
Hello, my name is Zena Marijewko and for my IB CAS project I drove down to Seeheim-Jugenheim in the federal state of Hesse and conducted historical diary entries about my grandmother who suffers from Alzheimer’s, a severe form of dementia. The purpose of these entries is to raise awareness of the condition, however, with a personal insight. I conducted the entries by going to Seeheim for four consecutive weeks (ending during the Easter holiday) in which I visited my grandmother once or twice each time, depending on the duration of my stay.
I chose these dates, as my mother had to drive there as well, which coincided perfectly with my schedule. We travelled on weekends so none of us would miss work or school. Every time I visited my grandmother, her mood was different. A person with Alzheimer’s disease can feel different every day (every hour, even every minute to be precise) and their moods are extremely unpredictable. It did not in any way influence having a great time with her though. I hope that through my personal diAlby Zena Marijewko, IB13ary entries, you will be able to see the way Alzheimer’s disease impacts an individual and their families. I hope you enjoy them!
If you have any further questions you can email me at
March 17th 2018
Today I visited my grandmother for the first time. I call her “Oma”, which is “Grandmother” in German. She lives in a privately run home for people with Alzheimer’s disease, which is a severe form of dementia. She lives in this house with another nine patients who are taken care of by four caregivers. The patients all have their own bedroom but share the bathrooms. On the ground floor there is a big American kitchen with a huge dining table, a small living area with comfy sofas and a nice garden. The concept is “living together in a home environment”, i.e. a semi normal lifestyle, with the added advantage of being cared for until the end of her life. Those patients who are still able to help with the cooking, baking or gardening. They sing together or e.g. walk to the supermarket to buy groceries.
If you are now imagining almost a dozen people with Alzheimer’s living together, it is exactly that. They all live together; and every day there is a new story to be told about their “adventures”. Some of them, amongst them my Oma, don’t really know the concept of “my room” anymore. They walk into any room thinking it is theirs and start dressing in the clothes they find in the wardrobe, brushing their hair, sitting down in the chair. My Oma e.g. is always complaining about the incredible mess someone made in her room – only to be told that she is in another person’s room and of course, this looks different to what she might have remembered from hers. She then shakes her head and does not believe this.
When I walked through the door, she was sitting at the big dining table in the center of the ground floor. I was very happy to see her, so I shouted from across the room “Oma”. She didn’t look up, since she unfortunately does not recognize me or anyone else for that matter anymore. She does however react to the aura a person radiates. She smiled back right away and when I gave her a big hug she greeted me back. I am aware that she only knows that I am a familiar face, one that she can trust. She doesn’t know who exactly I am so I introduce myself: “Omalein, don’t you remember me? I’m Zena, Petra’s daughter. I’m your granddaughter.” Immediately she said that of course she knew who I was and that it has been too long! I gave her a big hug and a kiss on the cheek like I always do. I then sat down and asked her if she had already eaten. She said “No, they are starving us all”, whilst having a piece of chocolate on her chin. I asked who “they” were. She just said, “Well you know… those people.. you know who”. I nodded and laughed. Then she asked if I had already eaten. Even with dementia she always cares for others. Although people with dementia might seem like they transformed into totally different people, and although this is partially true, there are some characteristics of the person that survive and remain.. My grandma had always been very motherly to everyone, very kind and caring. This a trait that survived, although many others disappeared. Another patient, however, is taking the other patients’ food from their plate and pokes her finger into their face. A lot of this is down to her illness, but I wonder whether she maybe had been similar when she was healthy.
My grandmother did not want to do anything in particular, so we just sat at the table and looked at some photos displayed on the walls in the living area. These are photos taken by the caregivers during a garden party, the Christmas carol singing, baking afternoons etc.. Oma never recognizes herself in the pictures. She looked at me incredulously when I pointed out a nice one of her peeling some potatoes and said: “No, this can’t be. The person in the photo is so old.” She does not recognize herself in photos nor any of our family. Photos of my siblings or mother are somehow meaningless to her. I changed plans and instead we took a look at the local newspaper, which my grandparents had always subscribed to and read the headlines together. She commented on them, reread them and commented on them again. We then ate some banana cake Uwe, her favourite caregiver, had baked.
When visiting a person with Alzheimer’s disease, it is important to limit the time of the stay. A visit is challenging for them. The brain is working overdrive and they exhaust fast and cannot rest.
I therefore said farewell to her and went back to my aunt’s house where I was staying. Whenever I leave her, I need to make sure not to leave too abruptly. She always gets extremely difficult when I do and shouts after me – or whoever is leaving – and begs us to take her with her. She likes staying in the house, but converts these emotions into hatred for the unknown and unfamiliar. I have over the years developed a strategy though: I always tell her I have to do some homework and ask her if it is okay to leave her alone so. Since her dad used to be a school teacher, she has great respect for the education system, even now, and always tells me to go and do my work.
Overall, it was a very nice first day with her and I had a lot of fun, even though she didn’t know who I was. This is okay though, as long as she is comfortable with me.
March 24th 2018
Today was my second visit! Yesterday, I rewatched the movie “Honig im Kopf” (“Honey in the head”), which had been released shortly after my grandmother was diagnosed. It deals with a grandfather who is suffering from dementia as well. He goes on a little trip with his granddaughter. As a family with a relative who is just like this grandpa, it is a great movie to watch, because it is a comedy that we can all relate to. For example, I looked after my grandmother for an entire summer. Whenever I cleaned up, I would find the most random things in the most random places. Toilet paper in her nightstand, a toothbrush in the oven, very old and very smelly bananas in a flower pot. This movie illustrates exactly that. The reality of the disease, but also the innocence of these patients. They have no idea what they are doing which adds a sense of humor to all of it. It works a bit like comic relief I guess.
Today wasn’t a good day for my grandmother. She was not in a good mood in any way. She was upstairs in her room when I and my mother got there. We brought her favourite magazines. She looked at me with a confused and dazed gaze when I greeted her. Even though she seemed happy having guests, she did not talk to us and rather ignored us. It wasn’t a big deal though and I didn’t let her mood ruin our visit. Since she wasn’t too energetic, I decided to look through a magazine with her. She used to always read the magazine called “Brigitte”, a German lifestyle magazine for middle-aged women. We always bring her a copy every week even though she generally misplaces them after an hour.
We looked through the magazine for a while and talked about the women’s outfits or the gossip. Afterwards. I mentioned my grandfather and Berlin, and she would always tell me about their times visiting the Berlin Opera or their other trips around the world together. It’s really easy to have a conversation with her because all you need are three topics and you are set. I always just ask her the same question or tell her the same story and she will always find a different response. Today, for example, I told her how pretty her (plastic) flowers are in her room. She either would not be bothered by them and act as if they are alright, or be excited about their beauty too and be very pleased with herself because she always takes great care of them. The reason – by the way – for them being plastic flowers is that she keeps watering real flowers over and over again until they drown and die. She just forgets that she had already watered them, so we started giving her plastic flowers instead with a chance of survival.
Looking at the flowers gave me a great idea. I took her downstairs, which she only did hesitantly, and lead her outside. I asked Uwe for a watering can and started watering the flowers a little bit until she wanted to water them herself. Gardening used to be her passion, so nowadays we always try to get her outside, because the smell of flowers and taking care of them always makes her very happy. Whenever I complimented her on her flowers she would smile really big and say that they are her work of art and she always takes care of her things. She always says that. Even when I compliment her on her jewellery or clothes, which is something I like to do often as it sparks easy conversations about the items story. We had fun outside, but I soon noticed that it was slowly getting too cold for her. Since the flowers cheered her up a little though, I did not want this opportunity to go to waste. So, back inside, I decided to cut her nails. She never lets anyone cut them except for me, because I am family and the only relative who knows how to get her do things. I took her hand when asked a bunch of questions, one after the other. She would always try ask what I was doing with her and would tell me not to cut her nails (which before I cut them were double the length of the actual nail), but I would always ask another question before she could finish the sentence and was distracted again until the next question. Before I knew it, her nails were at a perfect length and I couldn't wait to tell my aunt and the caregivers who have been trying to cut her nails for months now.
I was happy to have crossed off two items on my mind map, even if she wasn’t in the best mood. After I had returned the nails set, she had already forgotten about her nails. I noticed however that our conversations were getting increasingly difficult for her to process. Therefore, I used the same line for exiting as last week, telling her I had a big assignment due and left her in her room, which was a lot easier than saying goodbye in the downstairs living room.
My mother (left), Oma (middle) and myself (right) shortly after visiting her, because my mother had to leave soon after.
March 31st 2018
Today was my third visit. Once again, in preparation of this week, I made a plan of what we could do together and updated my aunt on the timings I would be arriving. Since the easter holiday started today, I will be staying here for two weeks in which I have planned out three days I will visit her, one being today. The reason I cannot visit her more often in this time period is because I still have a lot of school work to finish and visiting her makes me lose an entire day. I am not in any way saying that I mind that! I am just saying that I also need to focus on my studies. Visiting her three times however will for sure be enough as she usually takes a day to regain her strength for the next visit.
I did not feel the need to ask my friend about my entry again, as I felt confident enough about it. Since my project predominantly persists of the entries and there is only really much work in the first and last weeks, here is the entry of today:
Today I visited my grandmother for the third time. Here is a little extract to give you a better image of our greetings: “Hello, little Miss. Are you working here?” my grandmother asked me. “No, Oma, I am your granddaughter, I am here to visit you.” I replied. “That’s nice”, Oma replied. I asked her: “Do you know who I am?” “Of course, I do”, she answered quickly “ you are the younger refreshed looking one”. I didn’t question any further. Refreshed looking sounds good to me. “So, how long have you been working here, little Miss?”, she asked. “But Oma, I am your granddaughter, I am visiting you.” “Of course, you are.” she replied. We keep on looking at the newspaper photos. Meanwhile lunch was ready. We both helped preparing the table. She looked at me and asked: “You have been working here for long, haven’t you?” “Oma, I am your granddaughter.” She looked at me in disbelief. What an absurd comment I made. ”Of course, you are, I know. Come and have some lunch.”
My Oma was having an alright day, nothing special, but she was excited to see me. We looked through a magazine. She used to do the crossword puzzle every day after lunch while having an espresso together with my grandfather. She remembered some of the common terms like “Stadt am Neckar” or “Längenmaß” but others she did not know at all and looked at me with a puzzled expression.
While doing this Uwe placed our lunch in front of her. Uwe is my Oma’s and probably our entire family’s favourite caregiver. They always dance together around the kitchen, bake cake or cook for everyone, as she is still one of the more able patients. Here is a picture of the two together. Uwe is a gem and has a unique warm way with patients which is very inspiring.
After lunch we cleared the table and tidied up the kitchen area together. Since Oma has always been a tidy person and used to iked everything to be clean, she often helps with clearing the table and doing the dishes in whatever way she still can.
After gaining back her strength, I decided to cross off another thing on the mind map: getting a haircut. I took her by the hand and told her we were going to get a haircut together. Whenever my family needs my grandmother to do something, they always ask me, because I know exactly how to handle the situation. Afterall, I took care of her for two months one summer and was the only one to get her to brush her teeth, shower or get changed, as she always without a doubt sure that she has already done either of those things.
Taking her by the hand and telling her clearly what we are going to do, is something that I have also observed with Uwe. With Alzheimer’s patients, it is important to tell them what to do and not ask them if they would like to do it, as the answer will generally always be no.
Together with Uwe who drove, we went to a nearby hairdresser and Oma got a trim. The hairdresser also blow dried her hair, which makes it look a little shorter in the picture than it is in real life, but nonetheless beautiful and fresh. Since my grandmother sometimes refuses to wash her hair, it was like hitting two birds with one stone.
April 4th 2018
Today I went to visit my grandmother with a great big plan for the day. I decided for us to go to my grandfather’s grave, as both her and I hadn’t been there in a long time and it needed some fixing up. Since the graveyard is in Seeheim Jugenheim, but my grandma’s WG is in Eberstadt and taking the tram is problematic as it requires a lot of walking, my mother drove us there. It’s never a problem getting her in the car, only one getting her out again. She thinks that we are taking her to a place called Neutsch. It is a little village about half an hour away where she grew up as a little kid. Her disease makes her believe that her childhood is her reality. That her mother and sister are still alive and that they still have a farm there. She can’t process the idea that some of her relatives, specifically her husband who meant the world to her, have passed away.
When we arrived at the graveyard, I filled up two watering cans only a quarter of the way so that she could carry it which gave her the feeling of being in charge. She then watered the grave herself and pulled out any dead roots and leaves. Even though she didn’t take a moment to communicate with my grandfather, I feel that it was good for her to be there. It was also really important to me, as I hadn’t been there in while.
Afterward, we went to a nearby café. I had a cappuccino and she had a black coffee like always. The café is called “Natale” and is run by my mother’s best friend and his brother. Their parents already used to run it when my mother went to school there. The café had therefore been very consistent and present in my grandmother’s life. It is one of the few places she still remembers. She got very excited when she heard we were going there. It is only a five minute walk away from the graveyard and church that we go to every Christmas eve. We drank our coffee and talked about the good old days when times were good and all were young.
Oma got tired, the day trip was exhausting her, so we decided to go back home. It was easy getting her in the car, but it was a disaster when we tried to go home as she suddenly found this new energy the minute we said we were leaving. A caregiver tried distracting her while we quickly fled, assuring her we would be back very soon.
April 7th 2018
Today will be my last visit to my grandmother for this CAS project, as my school starts again on the 9th of April. I walked into the room and saw my grandma sitting in her designated chair and place at the big table in the middle of the WG’s living area. When I approached her and already called out her name from a distance, she looked up and smiled at me. I knew she did not actually respond to the word “Oma”, as she does not even remember her own name, but my friendly face put a smile on her face. With her, I have noticed over these years, it is all about „you“. If you are happy and give off a positive vibe, she will respond positively to it too. Even on her bad days, when she is more confused than usual, she will still occasionally smile and be a little bit happier than she would without the good mood. As a generally energetic and content person myself, I actually love that about her. My siblings, who are slightly more reserved in that matter, find exactly this behavior challenging, which I in contrary see as refreshing… you receive what you transmit.
I gave her a big kiss, while she apparently was still processing who I was. I told her, “I’m Zena, Omi, your granddaughter“, just as I had done for the past weeks. She replied, “Of course you are, I know that” and smiled. I said hello to all the caregivers who gave me a quick update on her mood the past few days and offered some decaffeinated coffee. The patients usually drink this, because of their high blood pressure.
Since the weather was extremely pleasant and the sun was shining, I decided to go and sit outside with my her. Whilst we were outside, she enjoyed the sun and kept asking me if I had been at this restaurant before. I said, “No, I haven’t. Do you like it?”. This is easier than explaining to her that we are still at the house she lives in. She told me that she likes it a lot, but there were so many people here that would bother her. “Send them away”, she demanded. I tried to explain to her that we can’t just send people away, as it was impolite. I tried to cheer her up and focussed all my attention on her, making her laugh and smile. Whenever another patient would try to talk to me, she would always get extremely jealous as I have mentioned in past journal entries. I sometimes feel sorry, because the other patients – all women by the way – are very kind, mean well and always love it when I smile back at them. I usually have no idea though what they had just said. To get her mind off things I suggested going for a short walk to a nearby park. At first, she was hesitant, but when I started talking to another patient, she agreed.
We slowly started walking to the park. I am not the best with directions and she is even worse due to her disease. I tried hard for us not getting lost… as you maybe can imagine, getting lost with a person with Alzheimer’s can be a nightmare. We arrived at the pathway that leads through the park and since she generally has joint pain, I asked if she was alright or if we should turn around. After all, even just getting her to this park was an accomplishment in its own. She said “No” and that she was fine. I was a bit skeptical, but nevertheless happy for her to be outdoors so I did not question it. We kept walking and once in a while I would just start singing a classic childhood song or Christmas carols like “Oh du Fröhliche” or “Alle meine Entchen”. Since these are songs any German has sung at least once in their life, she remembered most of the words and could sing along. Random things like this always make her happy and even without her noticing, she does remember a few things when they are spontaneous. For example, if I just say a sentence with the word “Canada” in it, she immediately responds with the line of a children’s poem: Wir bauen uns ein Häuschen, ein Casetta in Kanada”, which translates to, We will build a little house, a little house in Canada”. Songs are a great way for people struggling with Alzheimer’s to train their memory a little bit. I think it is one of the last memories for them to lose so it is important to train those as long as possible.
After approximately thirty minutes, she felt cold as the wind had started, so I gave her my jacket: Before we went for the walk, I had asked her several times to take a jacket or a scarf, which she refused. I guess she now really is like a child now which I have to take care of. We started heading back, with her telling me every few minutes that her feet were hurting until she would forget about the pain again. We only had to stop to rest once.
I am very proud of her for what she accomplished today. She doesn’t go to that park very often anymore so to her it was a big accomplishment. Since she was so tired after our return the goodbye was also a lot easier this time and she seemed quite happy to rest on her own. I cannot wait to visit her after exams!
Us sitting on a nearby bench in the park and Oma sitting outside the community home
