What to say at the deathbed of a loved one?

Almost exactly a year ago, I experienced what it means to have to say my final good-bye to a loved one at their deathbed. It was a good-bye in which only I was able to speak and I was afraid of not doing it “right“. Of not finding the right words, of not being able to say something meaningful and most importantly: of not being able to give comfort. I was terrified by the fact that my words could have so much impact - for better or for worse, without ever having the chance to make up for it again. I know I was lucky though. Many people loose their loved ones suddenly, without any chance of saying good-bye. So in a way I am very grateful for this experience. But it was also one of the most challenging experiences I had to go through in my life so far.

Since this moment of good-bye, I went through what I said over and over again, always asking myself if I should have said something differently, if I could have done it better. I decided to share my experience almost a year later as a way of processing and reflecting on what happened but also in order to help others to prepare for a similar situation. Never before this experience have I asked myself what I would say to someone at their deathbed. But I wish I would have…

When on a morning in May 2020 I saw 5 missed calls from a very close friend of my aunt, I knew what happened before even calling her back and hearing the news: My aunt was in the process of dying. The doctors said it could happen any moment. I was under shock, even though I knew about her bad health condition. She was diagnosed with cancer 2,5 years earlier and had several other severe diseases. The last time I spoke to her on the phone, she was recovering from a COVID-19 infection and waited to be released from hospital. But that never happened. Although she was feeling very well when we spoke, her condition all the sudden got worse. But I wouldn’t know about that until that morning.

After hearing the news, I did not even ask about the possibility of seeing her. It seemed almost impossible as she was in a hospital in France and I live in Berlin. Both countries were in lockdown and boarders were closed. For the next two days I was completely lost. I was convinced that there was no way to see her. But I felt miserable and guilty about it. Especially since I knew that there was no one else from my family who could see her. My aunt was a nun so she had no partner or children. And because of a difficult situation in our family and most of us living far from her, only my brother living in Belgium and myself were in reach. The idea of her dying without seeing anyone from her family was unbearable. And yet there I was - paralyzed. It was only thanks to my partner and some dear friends that I finally found the strength and determination to inform myself and get in touch with the authorities as well as the hospital to check if I could make it to France and see my aunt. I could. Once I got the confirmation from the hospital, the rest was done within 20 minutes. I called my brother and co-ordinated where and how to meet so that we could drive together from Brussels do the hospital in France.

I took me more than 15 hours of traveling before finally arriving at the hospital together with my brother. We both agreed that doing this journey together was the best decision we could have made. You should not do such a thing alone - make sure to have someone with you. You might feel strong, you might be afraid of bothering someone with your request but don’t be fooled by that. You will never be able to predict how such an experience might unfold but you will always be grateful for having someone by your side. I was also very open in my communication with my friends and in my job. If you already know that some people will be trying to get in touch with you or are even expecting something from you during the time of your journey: let them know in advance that you won’t be available in the next few days. I received nothing but very understanding and supporting messages even from people that I barely knew and even when I did not reveal the whole story. We tend to be afraid of making other people feel uncomfortable or about appearing as unprofessional - of “oversharing“. But in situations like these there is no such thing like oversharing, there might just be a lack of empathy on the other side. And then again, you don’t owe anyone an explanation. There is no need to share more than the words ?situation of emergency“. That says everything the other person needs to know. The messages from my loved ones and friends helped me incredibly along my journey but I was also very touched by the short and sometimes long emails I received from people I didn’t really know, one of them being Daniela Felletti who’s empathy and support was incredibly healing and who motivated me to share this experience. Especially those who were in your shoes before will be a great source of support. Be open to receive their support.

Even though I had at least 15 hours to think about what I wanted to say to my aunt in my final good-bye, I felt completely unprepared when the moment finally arrived. My brother and I were not allowed to see my aunt together but that was okay for me. I wanted to be alone with her anyway so that I could talk more openly. After going through the disinfection procedure and taking on appropriate protection, a very compassionate and devoted nurse took me to my aunt’s room where I could sit next to her. There are no words to describe what I felt when I saw her. I think nothing can prepare you for seeing a loved one like that, which again is why it is so important to have someone close to wait for you outside.

She was under heavy sedation, with her eyes closed and not able to speak and I just hoped that she didn’t feel any pain. I was told that the day before she was still able to speak a little bit. The fact that I would have been able to really talk with her instead of just at her, if only I would have left a day earlier, is something that I haven’t forgiven myself yet. I was terrified of the responsibility of this situation. I even doubted if she was happy that I was there - if she would have wanted me to see her like that or if, maybe, it would have been her wish that my last memory of her should have been our last call, when we both still thought she would be out of hospital soon.

Even though she couldn’t talk, my aunt was able to move her hands and shoulders and I could tell when she was emotionally aroused. As soon as I started talking to her and touched her hand, there was a heavy reaction. I got scared. I was questioning myself and my motive so much that for a couple of seconds I thought she was in agony - that she didn’t want “this“ and felt like an intruder. I almost panicked and wanted to leave the room just out of fear that my presence would be causing her pain and because I felt I didn’t have the right to be here and to impose my words on her. I still can’t explain why I thought and felt that way. I was simply overwhelmed with feelings of guilt, insecurity and helplessness. But at the same time I knew that I had to put myself together. This was my last chance to talk to my aunt.

Both my brother and I struggled with what to say to my aunt. I decided to share some of the things I said to her so that it might help others not to feel as lost as we did or to come up with your own ideas. I was told many times that what I said wasn’t that important. I don’t agree with that. Even though words are not everything in situations like that, I still think that they do matter. By sharing what I said, I do not mean to say that these things are the “right“ things to say. I actually feel very insecure about some of them and you might strongly disagree with me. This is definitely not a “How to“ list but I hope that it will help others to be more prepared than I was. I will focus on why I said the things that I said more than on what exactly I said - to respect the privacy of the conversation but also to better explain the reasons behind what I said. 

I told her, that I loved her?

This might seem obvious but it is not - at least not to everyone. I am not very proud to say that it was not only the last but also the first time I told my aunt that I love her.

I come from a family where I received a lot of love from many family members. However, this love was not necessarily put in to words. From my conversations with many other people from different cultural backgrounds I know that this is not just an issue in my family. It might sound unbelievable to some of you but saying I love you (or some kind of equivalent that feels appropriate for someone who is not your partner) can be a challenge for people who - like me - do not come from a family where verbally expressing your love for each other is practiced frequently - or at all. My recommendation to all of you who know what I am talking about: just say it. Say the words, even though you know that the other person knows that you love them and even though actions speak louder than words. The exact words don’t matter but do express your love explicitly.

I shared memories

I spent most of the time talking about memories we shared. How my family and I used to visit her in summer and how I can still feel her hugging me so tight that I could barely breathe. How she, my grandparents (her parents) and I used to play cards together, and many more memories. Part of the memory sharing was also to tell her what will always make me remember her, like eating a religieuse - a french cake that both my aunt and I like very much and which literally means nun in French. I tried to describe as many details as possible so that we would picture the same images. It felt good to remember these moments and I think these couple of minutes were the most gentle ones we spent together.

I told her what I admired about her and learned from her

My aunt was a very particular women. She was a nun, even though she loved children more than anything else in this world. She was also very opinionated. Being part of the catholic church didn’t stop her from thinking and talking critically about the discrimination of women within that very same church. I always admired her for being true to her faith but also true to herself. It was thanks to her I learned to see religious people independently from their institutions and leaders that represented them. Unfortunately I missed the opportunity to tell her that as it didn’t come to my mind in that moment. But at least I got to tell her about a few other things that I admired about her and that I learned from her. Telling her what I learned from her was also a way of saying “Thank you“. For me, this was very important. I wanted her to know what impact she had on me and my life. I also reminded her of the things that we had in common. I only said things that I truly meant. It was important for me to be authentic and honest and not to dilute my words by saying as many things as possible. I wanted her to know that whatever I said, I truly meant it. I told her that I will keep those things always in my heart, together with the memories we shared.

I acknowledged her battle

One of the things I admired the most about my aunt, was how she handled her diseases. My aunt has been sick for many years. I think I never saw her truly healthy. But things got really bad when she was diagnosed with cancer. She endured many chemo therapy sessions and later on radio therapy which caused her tremendous pain and disabilities. I remember her saying at the moment of her diagnosis that she would never accept chemo therapy because she didn’t want to suffer. But she did. She didn’t lie to me about her condition but she never complained. Whenever I visited her or talked to her she would say what was necessary to say and answered my questions, if I asked them, but then she would always talk about something else. I felt like I had to acknowledge her battle that she fought, not only for her but also for everyone who loved her. I thanked her for being so patient and for not giving up even though I knew she thought about it. It was also because of this reason I mentioned a lot of memories from the past 2 years - memories and good moments which we wouldn’t have had if she would not have decided to go through therapy.

I addressed the elephant in the room

Until this point, I was more or less confident with what I said and how I chose my words. But this changed all the sudden when I knew that I had to make a difficult decision. Because I reached a point where I felt I needed to address something uncomfortable, something that has always been the elephant in the room whenever I visited my aunt and which I know she didn’t want to talk about. I was torn between using this last opportunity for healing and respecting my aunt’s decisions from the past. In retrospective I’m not sure if I have done it the right way and for sure I could have done it better.

Unlike in many other situations like that, the elephant in the room was not that my aunt was about to die. We both knew it. And it actually was a relief not to have to pretend that she wasn’t. It might have prevented me from saying some of the things that in my opinion mattered the most. Our elephant was a different one. The situation within my family is very complicated and there have been many unresolved issues between my aunt and parts of her family. I felt it as my responsibility to address this situation but in a way that would not upset my aunt and without the expectation of resolving anything. Even though I was the third party, it was extremely difficult to address this issue because in the past, bringing up this topic would extremely upset her. My solution was to first say that I was going to talk about something that I wasn’t sure she wanted me to talk about and that she should give me a sign if she wished for me to stop. I then made sure that everything I said had the purpose of helping to reconcile and to forgive. I tried to go beyond what separated my aunt from her family to what united them. To be completely honest, I still don’t know if addressing the elephant in the room really helped my aunt (and I still believe this was the only thing that mattered) or if I should have rather silently accepted its presence. I don’t think that it’s always the right decision to address something that you think is important but also uncomfortable for the other person. The only advice I would give is to ask yourself if it is truly helping the person listening to you (and not just yourself or someone else) and to make sure that whatever you say comes from a place of love.

I connected to her faith

I am not a very religious person. But that didn’t matter because my aunt was. As a nun her life was inseparable from her faith. I felt like not connecting to her faith would be like denying who she was. But I was also afraid of screwing it up. I was especially afraid of being insensitive or not hitting the right tone, causing more harm than providing solace. But it was surprisingly easier than I thought. And I think the reason for that was because in the end, we are all somewhat spiritual. Maybe not necessarily exactly in the same way like the most popular religious communities - maybe some of us have their very own definition of spirituality and maybe we wouldn’t even label it like that. But I think in the end we all wish to believe in something that is bigger than us and independent from time and space. And if you think there is not a single grain of spirituality inside you, then you might well discover your faith in situations like the one I was in. I can really connect to the words of social psychologist Jonathan Haidt about being religious while at the same time not label myself as a religious person in the classical sense, which is also why I would replace religious with spiritual in his quote: 

“I believe that we evolved to be religious. A part of being human is believing in gods and worshipping and having a sense of the sacred. And I think we have a need, we have a hole in our heart, I believe it got there by evolution, it got there naturally, and it is effectively filled by God for most people. It can be filled by other things. But I think it needs to be filled by something—and if you leave it empty [people] don’t just feel an emptiness. A society that has no sense of the sacred is one in which you’ll have a lot of anomie, normlessness, loneliness, hopelessness.“

Though I disagree that we need gods, I do believe that we have this “hole“ in our heart and that we need to fill it with something. We might ignore or not feel it when life is treating us well but it becomes very present in our darkest moments. What helped me filling the hole in my heart, is the idea of interconnectedness. To be connected to everything in this world - and especially to the people I love - independently from time and space, beyond death. And this is where I tried to connect with my aunt’s faith and to talk about the things that we both have filled our hearts with. She and I both knew that her death would not be the end of our connection.

I told her it was ok to let go

This was the most difficult part. I could see and feel that my aunt was suffering. My only hope was that she couldn’t feel any pain. She was not someone fighting for her life. It was not a situation she needed to go through until things would get better eventually. We knew that things would not get better again. This might sound extremely harsh because you might say that one should never loose hope or give up - and I think this is true In many cases. Sometimes, this is exactly what we need to do. But not in the case of my aunt. She was suffering for a very long time and her wish was not to live as long as possible, no matter the circumstances, but to live a life in dignity. Which is why I didn’t tell her to hold on, or that she will get better soon. Not because I thought that she needed my approval, but for some reason I felt the urge to tell her that it was okay if she didn’t want to fight anymore. That it was okay not wanting to suffer any longer. I just wanted to let her know that she didn’t have to fight for me or for anyone else. That we would be okay and that the only thing that mattered was her. Maybe this was completely unnecessary and maybe I didn’t have the right to say such things. But knowing my aunt and how she always tried not to cause any inconvenience for me - always being way more worried about me than about herself - I just needed to tell her that. This is also the reason why I didn’t tell her that I will miss her, even though of course I will. Because I knew she would feel bad for me and I didn’t want that. I didn’t want that in her last moments here with us she would have to worry about me.

I didn't say good-bye

And then came the moment I was most afraid of. I knew I had to say good-bye. But how do you end such a conversation? How can you possibly say that now is the right moment to say good-bye forever? I had no idea and I still don’t. I couldn’t think of any possible way that didn’t feel shattering. How could I possibly leave her? I know that the fact that I left her will shock many people who stayed with their loved ones 24 hours per day until they left. But this was not an option given to me. I was lucky that I could see her at all, despite all the restrictions. I knew that I had to go and that I wouldn’t come back. But as horrible as the decision to not coming back was, it also helped me to say almost all the things I wanted to say. There was no postponing. In the end, I didn't say good-bye. Instead, I told her that I loved her and that I would see her again. Sometime. Somewhere. And then I left the room.

My aunt died the same night. Her name was Fran?oise.