I talked about this a couple of times on my blog, my uncle is terminal ill as he got the Glioblastoma Grade IV brain tumor diagnosis one and a half-year ago. We’re happy that he is still under us and he is doing ok, but it’s definitely already visible where we’re heading to. The sad truth is that he is not in the good old shape anymore. The tumor does wreck him, but very slowly. On one side we’re happy to still have time with him, on the other side it’s just sad to see the slow process caused by the tumor, and probably by the treatments that give him more time but that also come with all kind of negative symptoms as well.

He can still walk but bent, maybe for 30 minutes until he needs to sit. It’s been difficult to motivate him, he prefers to sit on the couch watching TV, or on the balcony when the weather is good. You’d say he’s in a bad shape, unless you hear he’s fighting a brain tumor and is doing this since one and a half-year. But his mind did take a lot more damage than his body. He can remember things that happened today, maybe even things that happened this week. But I have the impression that he lost every memories that were there before he got parts of the tumor removed. But sometimes he also can’t remember things he talked about hours ago when it’s a bad day for him, so it depends. But like all of his symptoms, they come and go, and there are days where he has a very clear mind. Talking with him gets more and more difficult as well. He has trouble finding the right words but I got used to it. When he is looking at the heaven and says “There are a lot of bricks on the tower today”, I just know he means “There are a lot of clouds in the heaven today”. I don’t know how that works, but it is just working. I can fully understand him even if it doesn’t make sense what he is saying. We all got used to it, we can communicate with him like there would be no difference. And as said, sometimes these symptoms are gone completely and he starts to speak clearly, finds every words and so on.

Anyway, I learned there is so much more to communication, it’s not just saying things and listening. It’s that you pay attention to more things, like what did we talk about a minute ago, where are his eyes pointed at, how do his used words stand in relation with each other and so on. It comes and goes in phases, sometimes he is talking like everyone else, and then you see how he has trouble to express himself. When I correct him or to be more exact, when I try to help him discovering words or thoughts, he smiles and says things like “I don’t know how you’re always doing it, you’re right, that’s what I really meant”. It can be quite funny, like a game, it’s in fact in a way cute because when you ask him what he wants to eat today, the answer could be “Electric cables with sand” when he actually means Spaghetti Bologna. You see what I mean? What kind of food could look similar to cables? Spaghetti! Sand? The meat in the bologna sauce! It’s been a while since he started doing this and doctors said it’s due to the increasing brain pressure, which is why he takes something similar to cortisone, to prevent that the brain can swell. But longterm, this is exactly what will happen anyway. Tumors are also called space-occupying lesions (everything that occupies space in our body is called that way in medical jargon as I learned). It’s not just that the brain can swell, the removed tumor cells can and will grow back in his case too. Simply said, there will be less space for important brain areas, and this is causing the issues.

Even if there are changes, we see what is causing it, and we accept him with the symptoms. But I’d lie if I would say that we accept everything. Even if caused by the tumor, there are things hard to get used to. He is thankful for help most of the time, but there also have been times where he was really disrespectful against those that offered help, this even included insults. When we visited one of his doctors and since he looks a bit fragile at times, my mother offered him to walk down the stairs with him together, but he got very angry about this. Things like this happened quite a few times. We try not to treat him like a baby, because he can still do many things on his own but there are times when something looks dangerous and that’s maybe where someone steps in to offer help. As said, often he is thankful or doesn’t say anything about it, but there have been times where he became angry and this is very difficult for us all. So, in the case of the medical office for example, it was a narrow spiral staircase, and my uncle didn’t really look as if he could make it down without broken legs. These are points where you forget his disease, where someone maybe yells back “I just want you being fine”. It’s also about responsibility. We’re responsible if we are outside with him. I understand him, he wants to try things on his own, but there are situations where you can’t care about this, where you have to help.

This topic came up another day when my mother talked with his doctor. It happened one day when the doctor was also interested to hear how we are doing. They know very well that it’s not just about the person that has to deal with a horrible disease, in fact all around the person have to deal with it in a way. So, my mother told him that things are not always easy and the doctor said that it’s right to draw a line somewhere. You don’t have to retreat if the diseased person demands impossible things. He told my mother, it’s stress for everyone, you don’t have to accept everything just because the person is ill, because this is how you would hurt your own psyche. There have been other examples, like when he asked to bring him something particular for the meal and you’re on the way but he calls you ten times in a row even if you just have been 20 minutes away and you’re already on the way back. So, there are times where you turn off your phone, because you know you’re on the way back to bring him what he wants. I see it like the doctor, you can’t just accept everything, there are times when you decide how things work, and also you don’t have to listen to insults, which happened already too a couple of times. Anyway, I know what is causing this, nobody is angry at him when he is in a bad mood. We forgive him even after an insult, because we know his situation and that it is the fault of the disease.

My uncle has support and this won’t change. At the end of the day when something was difficult again, I still see the tumor at fault and not the person. We never have been angry at him. We know what is causing his mood swings and we know how difficult all that must be for him. Literally, it’s just that you sometimes have to draw an imagine of the whole family, so that he can see we all try the best with what just happened. So, when we remind him of this, he calms down and we enjoy the time until he gets a bit stressed about something again. Most of the time we still have very good moments together, like having a meal together, sitting on the balcony and talking about good things even if these are more talks about basic things, as he has problems to understand more complex subjects. There are these days when he seems to be happy despite the disease, it can be a meal he is happy about, or something you told him and so on. These are the moment when you almost forget too that he has this ticking time bomb in his head. He sometimes wants to talk about it, but overall he tries to move along, showing me a TV show, talking about food or other basic things. That’s maybe why I said it’s funny when he is mixing up words, because to me that’s how we still can have a good time now, it’s talking, a sense of normality. He can still enjoy moments and when he smiles, I sometimes wonder if I could do it in his case. I think he is much stronger than me. So, as long as we still can, I really want that he is experiencing normality. Sometimes it is also just being there, he feels good when people are there.

I am grateful that he is still there, and I could probably end my last paragraph with some happy sentences. But as said earlier, it’s also pretty sad to see how a disease slowly takes over a life. When I was alone with my mother, we often talked about diseases and death since his diagnosis. We talked about the things that might happen next, if slowly or fast because you can’t ignore it. The reality is that we will have to visit him in the nursing home or hospice at some point unless death comes much faster. My mother helped a neighbor over the last weeks (laundry, shopping, cleaning rooms and so on), this neighbor woman got cancer. Yesterday a company did put a nursing bed together because they expected that she would still make some time. Today my mother was there again to clean the rooms and the doctors arrived and suggested her neighbor to go to the hospice on Monday. The woman also did demand my mother’s hand and said “You heard it, I now go dying, can you visit me if I still have some days?”. My mother told me, there was also the daughter of this woman, she did of course cry. It struck me right away, a feeling of fear came up, how would I handle it if I would have to send my mother into the hospice? She’s doing fine, she always did, that’s maybe why I never thought about the reality that this could change at some point, except if I have to go before her. It might sound strange, but you don’t think about death that much if it always has been far away.

Simply said, the topic has never been around us until my uncle got the diagnosis, we’ve been healthy and some of us still are, it just came closer to us with his disease. It’s a topic now, sadly, not in front of him of course, but it’s a topic. Which means, new fears come up too. It’s easy to appear strong if you want to make someone’s suffering easier, it’s like an inherent mechanism to protect that person. What is not easy is to go home, still wearing this mask. You don’t. No, I had my sleepless nights with all kind of new fears and negative thoughts that came up. Not just related to my uncle, but generally about the family and my life. The disease of my uncle is clear, but how old are grandma and grandpa? The wish that my mother has a long life. Simply put, I realized how small the circle is that I consider to be my family. Yes, my family is much larger, but I don’t have the exact same relation with distant family members. It’s about my family, but also about myself. The days when I have existential questions or thoughts, my former anxiety disease and depression have field days again. I still can get quite dark thoughts, except that I can deal better with them today.

No, it’s not just about the person with the disease. It’s about everyone. When I talk with my mother, I see that I am not alone with my thoughts. You don’t want or don’t have to think about certain things if everything is fine. The “What if…” or “Have you every thought about…” is simply more present since my uncle got this diagnosis. Fortunately these questions don’t consume us, but it’s simply harder to ignore these questions now. They are sometimes just there. Positive is that you’re not even afraid to talk about death anymore. Just two month’s ago, we saw grandma and grandpa running up and down in the external staircase of their apartment complex, and we asked what they are doing. They answered “We clear out the basement because in case we die, you guys should just inherit valuable things and not work”. And my mother started to laugh with me. It made clear that they had a couple of “What if…” questions recently too. Maybe that’s the only positive thing about all this, we learned to deal more openly with the plain fact that we all have to go some day, and that it can happen at any time. Positive is maybe too that we learned how to deal with all the problems that come up if a family member gets seriously ill. There have been a lot of challenges that we mastered.

Finally, I think that is maybe what fears are about. That’s maybe why it makes sense to talk about the worst case. It’s maybe a defence mechanism as well. It’s maybe how you prepare for the inevitable. I believe you can’t deal with the things if you swallow the thoughts that bother your mind.