Don’t lose your mind
PhD life and taking care of my demented father
Summer 2021 – a relaxing summer with some strange interruptions
My summer started great. I defended my Master’s thesis successfully and exactly one week later I got a PhD position. This news marked the start of my summer holidays: six weeks to relax and to enjoy life to the fullest. I had been longing for it for months and the first two weeks were amazing. I walked the alternative Vierdaagse, 50 km for four days, and uncluttered my house. So far, so good.
But these sunny days were interrupted by some strange occurrences. My father lost his way in his hometown. Another day he was sent to the shop, and returned with a blocked debit card, but without the groceries. And suddenly he bought a smartphone, with no clue what to do with it. I was enlisted to teach him, but we never came any further than turning the phone on.
It was strange, worrisome, but for the time being… It was summer, everything looked light and worries melted away in the sunshine. But nevertheless, I addressed this situation in my introductory chats at the start of my PhD. And soon, I was very happy with my decision to bring this topic up.
September / October 2021 – at the edge of losing my mind
At the end of the holidays my father’s condition went downhill. My mother went to the hospital with him, and they came out with “dementia and help needed”. From that moment on we were on a rough sea: accepting the diagnosis, accepting that my dad died somehow, welcoming the new person he has become, organizing daycare, taking over my parent’s administration, becoming the legal representative of my father. And wait a second, I also just started my new full time job.
I had only been working three weeks at the university, when I knocked on the door of my supervisor. I found a listening ear and it was such a relief to hear my supervisor saying “What counts at the end of the day are your relationships, not your PhD.” We set up a schedule in which I arranged my PhD around my father, and threw away my false belief that a PhD student should work full weeks no matter what. Instead, I committed myself to work at least one hour a day, which helped me to stay connected with my PhD project. I also divided my time in blocks, for my PhD work, for phone calls, for visits, etc. This gave me a sense of control, and surprisingly it helped me to achieve deep focus during the limited hours I was working. Due to this I became a steady sailor on the rough sea.
So, my work was arranged and this paved the way to improve the relationships with my parents. My mother had to take over a lot of duties from my dad, and each time I visited them, she bombarded me with requests for help. Gone were the times of just drinking a cup of coffee together. We restored this, by setting fixed times for coffee chats and fixed times for help. This relaxed the situation and restored the relationship between my mother and me.
My second action was to invest in learning how to deal with my father. I signed up for a course especially for caregivers of loved ones with dementia. This course was wonderful. The exchange of experiences was such a relief to me and I got so many tools to build a better relationship with my dad. My behavior towards my dad changed from being frustrated by hearing the same stories over and over again, to doing things together like listening to a clarinet concert. I had lost my dad, but I was finding him again.
November / December – healing time
Currently, my dad is doing fine at the day care program. I get pictures of the activities they do: singing, celebrating Sinterklaas, decorating the Christmas tree. Heartwarming. My mother is also doing well. She learned to enjoy her ‘free’ time. When my dad is at the center, she meets friends, goes shopping, and looks much happier than before. And I? I also look better. My hair is less dry, the spots on my face disappeared, and my tears dried up.
Sounds like I should be ready to go back to a normal work schedule. But no, building up to a full work week turned out not to be as easy as I thought it would be. First, I was too tired. The situation has calmed down, my stress level has dropped and as a result I was sleeping nights and days. In my dreams and nightmares, I went through all that has happened again: visiting daycare centers, becoming the legal representative, signing papers in the name of my father…
Second, when I was awake, memories and emotions were flowing over me. As a child I liked to cycle with my dad, but the last time we were cycling, I guided him like a driving instructor would guide a student in the first lessons. I knew: this is the last time. My strong, independent, intelligent father is gone. I needed time to process this all. So I kept the same working schedule as before: blocks for work and blocks for digesting my feelings. It tasted ugly, but it purified me.
After a while my sleeping pattern returned to normal and my emotions got back into balance. Now I could return to a full working day, I thought. But no. Despite the fact that I have processed what happened, mourning continues. My father’s situation is deteriorating. The loss of capacities is painful and hard to accept. To become a steady sailor again, I need to find my balance between work and mourning.
If you find yourself in a similar situation, here are some tips that can help you through this:
Contact your supervisor
Your supervisor is the first person to speak with when you notice you need to care for a beloved one or when you need to care for yourself. The sooner you talk, the easier it will be to find solutions. I noticed that the negative impact on my PhD is minimized because of the interventions we made.
Stay in contact with your supervisor on a regular basis. Every two weeks I updated him about my situation. Sometimes shortly by mail, sometimes we had meetings just about this topic.
Reach out to people
Talk with friends, family, colleagues. They can support you very well.
If you are scared to talk, feel free to refer to this article. When we discussed this article in the writer’s community, so many of us had similar experiences. You are not alone.
Take care of yourself
Remember: taking care of yourself comes first when you want to take care of someone else or of your project.
Listen to your body. Pay attention to stress symptoms and try to reduce stress.
Listen to your emotions. Suppressing emotions is practical when you have to deal with a crisis, but you have to face them. Take time to feel your emotions, do not flee into your work, neither in alcohol or drugs.
In case professional help is needed
When you have to deal with a disease, feel free to ask the doctors, therapists, coaches who are in charge for help and advice. There are many groups where patients or family members of patients come together to support each other.
You can talk with your general practitioner.
You also can talk with a clergyman.
Tanja van Hummel is PhD-student at the Faculty of Theology and Religious Studies. She researches the sacred dimensions of climate change-induced conflicts among indigenous peoples in Kenya. She is also the chief editor of MindMint.