I have dementia

Ko Wiz De Flow

I noticed that things (this word is becoming more common) no longer went so easily or automatically. I realized that sometimes I could no longer solve bigger and smaller problems, while I am practical, handy and solution-oriented. I’m good at math, but do the tables in quick succession…? I don’t know what 9×8 is, but don’t worry, I do know what 5×8 is…

Now I consciously and unconsciously avoid things that I cannot solve, I don’t want to be confronted with that too much. I also have to think longer about answers, too many questions at once, chaos in my head. In the early days I found it difficult to understand what was going on, it is and remains a difficult ‘discovery’. However, I have resolved not to fight it or get angry. I can do little or nothing about this disease.
In all fairness, I must admit that without my wife, whom I occasionally jokingly refer to as “my personal secretary,” normal life would be a lot harder for me.

My wife and I mainly try to think in possibilities. I give some examples of what I (we) have adapted in the meantime. In the past, when we were both still working, we took turns cooking. Now we do this together more often, I’m having trouble keeping the right order. I shouldn’t run away from cooking, then I’ll forget I was cooking. I was a tenor in a small, semi-professional project choir. With great pain in my heart I said goodbye. Despite a lot of practice at home, it was no longer possible to get the music rehearsed.
Now I go with my wife to her multicultural music choir. A completely different level, but I can keep singing and the people around me are fantastic. My singing buddy helps me, if necessary, to find the music and sometimes shows me where we left off. My wife makes sure the music folder is in order. At home I still like to listen to my own classical music. Due to my limitations with the orientation map reading is more difficult, now a nice learning opportunity for my wife … We both like to cycle and I often put together the junction route. Now the tables have turned and the surprising thing? The routes are also more surprising! The combination of reading the nodes, following the route and paying attention in traffic is too much to ask of me. My wife gives the directions shortly in advance. We are ‘Ein starkes Team’ and enjoy ‘our Twente’. Again, ‘removing’ uncertainty as much as possible makes me feel good.

What gives me peace of mind most? Working and a little ‘tinkering’ in the garden. The garden attributes are in the garage and I can easily pick them up independently. In general, everything that is behind a door is difficult to find. Shopping! How many incentives and how many options there are! Almost impossible for me to do anymore, but together it certainly works. I do manual labor, push the cart and carry the bags to the car. My wife ‘does’ the shopping list. I like to read a lot, but what I read in the morning I can’t remember in the afternoon. Then only short stories, this was not a real solution. I prefer to read the two newspapers now. I can decide for myself how much and what I read. I would like to pass on the following to people with (beginning) dementia. Adjust the pace of life and your ‘before’ lifestyle. One thing at a time. Rest and regularity. Take plenty of time to start the day.
For me that means no one around me in the washing and dressing ritual. I then keep getting distracted and therefore I can’t keep my own order; I get pretty excited about that. Maintain independence for as long as possible. You do not immediately have to go into the entire medical circuit, you can always make your own choices yourself, if that is still possible, or otherwise with your partner. Enjoy what you can still do alone, but also what you can still do together! Don’t sit in a corner and mope about what you have ‘lost’, just look at the possibilities and try to function ‘normally’ for as long as possible.

Herman Finkers says: ‘Ko wiz de flo!’. You are not the disease, you are you! Finally, perhaps the most important. Now I am tired and ‘full’ in my head. But the most important? Maybe I have helped someone else with my story and experiences. “The right word at the right time is like a golden apple on a silver platter.”

Narrated by Henny, written by Marjo (ikhebdementie.nl)

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Plus readers previously told us about their experiences: what helps with dementia