We heard yesterday that there would be a room free in the hospice for my uncle who is terminal ill and who sadly got diagnosed Glioblastoma Multiforme Stage 4 a while back. Since today in the morning he got the room and we did give him and the hospice team a bit of time, but at lunchtime we visited him. We’ve been there for quite some time but meanwhile it was quite a bit hectic because different persons of the team wanted to meet him, and his family doctor arrived as well. But even if it was busy in his room, it was great because we could get an impression of all the people who want to help him there. We met the whole team, and they even showed us the whole house so that we got a nice overview of the place. I’d say it’s a very beautiful place, and it definitely is because it was well decorated and the staff was extremely friendly, it just feels strange to mention the word beautiful in this context because the sad truth is that it’s also a place where people take their last breaths. But that’s me thinking that way, because today was the very first time I saw a hospice from inside, and to be honest, I was a bit overwhelmed by my own thoughts. In other words, it’s strange to put thoughts like “This is where I feel my uncle will be in good hands” and “This is the place where my uncle will die” in the same box. But after a while I just accepted that this is what a hospice should be, a beautiful place to die. But to be honest, it does still feel strange to type that.
When the team or doctors were not around, we had a bit time to communicate with my uncle, but as mentioned in a previous post where he was still in the hospital, you reach him more with a non-verbal type of communication. But I think he is still a good listener at times when he is not confused, and sometimes you’re surprised when he gets things like “Yes, all right!”, “Let’s see!” or “Nope!” out of his mouth. There is still communication going on, but now it’s just different and you use non-verbal communication as well. But that doesn’t mean that we force him to communicate, because under us we made clear that we have one greater goal, just being there. With that said, everyone talked with each other, because that’s what we would have usually done at tea time (Kaffe und Kuchen as we say in Germany). Since the hospice team gave my grandma, my grandpa and my mother a coffee, it really felt like a tea time family meeting for a moment and I saw how my uncle was quite relaxed to have the family around him. I think that type of normality makes it easier for everyone. What I liked too is that they told my mother earlier that it would be absolutely fine to bring dogs with us. My mother had Charlie with her and it was magic, because my uncle was always someone who loved dogs, and the interactions between the dog and my uncle was priceless. We definitely repeat that as long as we still have time. It’s great that they allow this in the house.
But after a couple of hours we had to go and this was very difficult because my uncle looked very sad and even got tears in the eyes. It’s super strange, because you have some daily tasks as well, but at the same time you can empathize and I noticed how he must feel when we go. But I got quite hungry, I had to go shopping and cooked a meal at home, and I fed my cat. But it was around 6pm when I got the feeling that my uncle feels alone in the hospice and I decided to call my mother and asked her if she would like to visit him one more time today. The hospice is a 10 minutes walk away from me, and my mother lives close to me as well, and that’s something we really wanted to be the case. So, we went there in the evening again, he was quite tired and that was no wonder because it was a very exhausting day for him with all those things going on, but we thought we let him sleep. We talked quietly and he must have heard it at some point. He opened his eyes, but with his disease that doesn’t mean that he is already awake, because now it really takes time. It usually takes 5 or 10 minutes until he completely aware of his surroundings. When he was fully there, he started to notice us and made very big eyes and started to smile. When I said “Don’t believe you’re alone, it’s just a 10 minutes walk and we’re here again”, he opened his mouth wider and showed one of his smiles that I was used to when he said “Dude, that’s crazy!” or “Haha, cool thing mate!”. It’s strange, we humans do probably have thousand different ways to smile, but it was really one of those smiles that I remember him using in certain situation when he was amazed back in the days. So, we’ve been there again and enjoyed the moment together but when he got tired again, we told him that it’s fine to sleep and quietly left his room to go home.
My mother and I hoped on the way back home that this showed him that he is definitely not alone and that we’re just around the corner and that we can spend much time with him now. But the sad truth is that you can’t ignore your own personal daily tasks, and we talked with one of the hospice social workers about it and she gave us a good tip. For example, I collected a bit of my own paper works since he was in the hospital, and I am still in the deadline to reply, but usually I do this as soon as I got an important letter but at the moment it was not possible. Next, my fridge is now most of the time empty, because when I went into the stores, I just purchased what I needed for the day. My apartment rooms are untidy as well now. It’s the psyche telling me, these tasks can be done at anytime later, but you have no idea how much time there still is to spend with your uncle. I didn’t tell the social worker, but we told her that it’s difficult to find a balance between the own tasks, and the time we want to spend with my uncle. She said, as much as she can understand that we want to spend as much time as possible with him, it will be better if we divide the visits. So, from now on we might not storm his room with four people, instead grandma and grandpa will visit around morning and lunchtime for a couple of hours since they have time, and I will visit him together with my mother around afternoon to the evening because that’s best for us. Also we are currently in connection with a couple of friends he’d like to see, including one that is my friend too. Tomorrow I will surprise him with this friend for example. Then there are a couple of other family members that he knew well, and they will visit too. But as the social worker suggested too, we will dose the visits, except the ones of the close family.
We had some great moments today and I am now less afraid of the hospice, but I’d lie if everything is fine. So far I talked about him smiling and so on, but sadly there are also moments that I find difficult. For example today when I had eye contact with him, he literally escaped, like his eyes are still open but he is somewhere else. I mean, it’s a brain tumor, and you definitely see the aggressor in his brain at work and how it literally reboots functions of his brain at times. There was a moment for example when my mother said my name, and he looked at me as if he would not know anymore who I am. Then there was a moment where everyone else was busy but I had my chair near his bed and I took his hand and he started to look like he’s afraid of me. The moments of refusal are really hard to deal with because we’ve not just been family members, but also really good friends. He slept less today, and overall he seemed more active, but as much beautiful moments we had, there are definitely also difficult ones. The reality is, the brain tumor has grown so much that you basically notice how certain areas in brain go offline and online again. You also start to realize how much more complex our daily tasks are for our brain. This goes from recognizing someone or not, to being able to use the right hand in only a few moments, over speech problems that out of the sudden disappear and so on. Or how he can swallow water in one moment, but minutes later he forgot how to do that and you need to help him get it out of his mouth. We try to make the time as much enjoyable for him as possible by being there and helping, but it’s also difficult to see how much damage the tumor caused. All the more, it is very important that we remind him of all the good times we have spent together, when it’s possible, and when he’s responsive. Today for example we got him in a very good mood by telling him old stories about things we’ve done together during Holidays in France, it was one of those moments again where he smiled a lot. We also told him a couple of jokes, and other good times we had together. It’s really helping him, I noticed this today more than ever.
I had to write this post, it’s helping me to deal with it as well. Since his diagnosis I also learned a lot about myself. I think I am much stronger than I thought I’d be. I don’t deny that it’s difficult at times, but really, I thought I wouldn’t be able to deal with something like that at all. It turns out I was wrong. But this is not the only lesson I took out of this. I learned so much more. But talking about all that would be its own chapter. It’ll be difficult when his journey ends but I know he’d want us all to continue moving forward. And I won’t disappoint him, not now and not then. Now we will give him what he deserves, solidarity, something that the tumor can’t destroy. And a remaining time with dignity.