Agita's experience story
Interview with Agita
Author.
Date: 22.06.2022
Please tell us about your experience with Hospiss LV
A family member had sent me a link to the hospice website and I contacted them at the end of October. My mother got the diagnosis in September. I called the hospice in October. At that moment, my mother did not need hospice care yet, but I got in touch because I intuitively felt that I had to. I called, told them the situation and asked how they could help me. I was listened to by a very understanding person. At that moment, I had no idea that my mother's health would be so bad. She was in hospital. I had no chance to find out what condition she was in. I could not contact her. I did not know very much about her condition. Maybe the doctors wanted to protect me by saying that you probably don't want to see her at the moment. It was hard for me to comprehend that - that I was not allowed to see my mother.
It was a very difficult phase for me overall. I don't remember a lot of things. However, I was always supported when I contacted the hospice. We also contacted each other when my mother did not need hospice care yet. At the end of December I realised that she would need home care, but I did not know that it would be for such a short time. When I contacted the hospice at the end of December, they realised that they had to take action. I was very happy that there was a possibility to take my mother home. The hospice staff helped me to prepare a room for Mum's transfer, and also provided most of the things I needed. Everything happened very quickly. Mum had to be taken out of hospital. She was brought home where she was met by me, Mum's friend, her carer Valentina and someone else from the hospice. It was only at that moment that I realised the reality of her situation. It was a big shock for me because it had only been two months since I last spoke to her. When she went to the hospital, I was still studying abroad. Mum didn't want me to be around her at that moment because she thought everything would be all right. My intuition told me that I had to be there for Mum, but I didn't listen to it at the time. I came home when it was a little too late. We could no longer communicate normally because she had memory problems. When I brought her home, I saw how helpless and tormented she was. I had prepared myself for her to need home care for at least six months. In reality, it was only ten days. The doctor had come, as had other helpers from the hospice. They were the ones who told me that I was not far from leaving. I was very sad and very difficult. Both Valentina and others from the hospice were very supportive and strong. They were like psychologists and also helped me with the care tasks that I did not know how to do... I did not know how to do different medical manipulations, so the hospice team did it all for me. I got a lot of support from the hospice. Valentina was with my mum from morning to afternoon, then I looked after my mum. I was able to go out and air my head. Mum slept a lot. In the meantime, Valentina and I talked a lot about death. Valentina shared her experience of being next to dying people. This made me understand what was going to happen and what to prepare for. The moment of passing came very quickly. What Valentina told me was already visible in reality after a few days. If it hadn't been for Valentina, I probably would have lost my mind. Everyone from the hospice who came went through this experience with me. It was emotional, psychological and physical support, because I couldn't lift my mother, for example. I had not come into contact with any seriously ill person before. I couldn't imagine what it was like to need help, especially lying down. Mum left on Saturday. We expected it to happen. Valentina came to me and was by my side. Then followed the funeral and other things.
Did the hospice help you at this stage?
Yes. I had a lot of support from the hospice after my mum passed away. Valentina, as a knowledgeable person, helped me to make the necessary phone calls in a specific order. I was very confused at that moment. The hospice were like angels helping me. They told me at the right moment what to do. Prepared me, saying that now this is going to happen, we are going to prepare for it. I was scared to be alone in this whole process, but it didn't happen because Valentina was always there and helped me if I couldn't do something. Valentina and Dace were the ones who looked after me for the first few days after Mum left. There was so much to do for the funeral that I didn't have time to think about emotions. I certainly didn't feel abandoned. When I needed to, I gave the message and had the opportunity to talk and discuss what had happened - about the process, about the memories. It allowed me to let go and to have closure.
Can you please tell us more about how Valentina helped you prepare for your mother's passing?
I had found a book about death and Valentina and I were reading it together. It was about what people experience when they approach death. I tried to understand what Mum was feeling. I learnt and understood a lot through this experience. I realised that I cannot be selfish and that I have to take into account the fact that Mum suffered. I could not tell Mum that she must stay with me and that she must not die. Valentina talked to Mum but gave Mum the chance to leave. From what I read and what Valentina and I discussed, I realised that the longer we want her to stay, the harder it is for her to leave. Even when I was alone in the evenings, I would talk to Mum, but at the same time I let her go. I think that's why she managed to leave so quickly, because she didn't get stuck in some difficult phase or coma. That was what I learned. I had a light feeling with Valentina because she sees death in the same way as birth - as a normal and natural process. I felt with her that everything has a beginning and everything has an end. Thanks to her, I felt that the whole process was beautiful and that the doctors eased my mother's suffering.
How do you feel your attitude towards death changed before and after your mother's passing?
Since my mother left, every day I have a new thought, a flash of experience. I have the feeling that I am several years ahead in my development. I have a strong sense of appreciation for various everyday things that I took for granted before. Which things are more important and which are less important. I have experienced that life is fragile and that it can disappear in four months. I think about what I should have said to my mother, but I conclude that I said everything, I did everything right. It was very difficult to notice the middle phase in a process as fast as Mum's, because at the beginning Mum was healthy and then she was on her deathbed. It was very difficult for my psyche to grasp that. We cannot catch and hold anything. Everything is like sand going through our fingers and we can't hold it. We can survive it when it is. If you live with that kind of awareness, I think life itself is more beautiful and fulfilling.
Did you have a chance to say goodbye to your mum?
Yes. Valentina urged me to say goodbye early. I also realised that I had to do it while I still had the chance. I felt several times that this was the day to say goodbye, because tomorrow might be too late. She didn't really react anymore, but Valentina told me that the person could still hear, so I spoke to her. The last look I have in my mind is of my mother - very positive and warm. I took it as a wish for life.
Did you have a chance to talk to your mum about how she would like to go?
No, unfortunately we didn't, because everything happened too fast. Neither I nor my mother foresaw it. We couldn't see if Mum understood, but we asked her questions from time to time about how she would like to go. We managed to get an answer from Mum.
Were you there when Mum left?
I was in the same flat as my mother, but in a different room. Every night before I went to bed, I thought that would be the night she would leave. Before seven o'clock I had to take my medicine and then I realised that she was gone because she was not breathing. I couldn't believe it. It was very difficult for my psyche to both comprehend and accept. I remember afterwards we were trying to work out exactly when she had gone. I remembered that I had woken up in the night. I had a strange feeling. The time was 2.50. I did not go to see my mother because we had agreed that I would not go to see my mother at night. It was discovered that my mother had left just around the time I had woken up.
You mentioned that you didn't get a chance to talk to your mum about how she wants to leave. How did you make the decision to take your mum home? Was it an intuitive decision?
Mum should not have been left in hospital. I was worried about where to take Mum. I think it was all very intuitive. I had a feeling that the hospice needed to be involved. I was scared of where they would take her if I was not able to provide care at home. I phoned different care homes and I realised from what they could and could not offer that I did not want to bequeath that to my mum, no matter how long she had left to live. The tenderness and affection that hospice care gives to a patient - I don't think that is possible in a care facility. Mum was very happy. She thanked Valentina and the others. She was happy because she did not like being in hospitals. I compared dying to being born. Also pregnant women are surrounded by doctors and psychological support. All this is done so that the baby is born healthy and happy. Everything is organised in a very warm and loving way. In a way, I think it is the same with dying. That it should be the same, with both tenderness and warmth. My mother created me and I and others can help her to go beautifully and warmly, without pain. Death and birth should be equally important processes.
Is humanity what hospice brings?
Yes, it certainly is. We thought about what Mum would like. Would she like a TV, would she like a radio. We thought about her all the time - what is it that she would need, what would she want, what would make her happy.
What word comes to your mind when you think of a hospice?
The warmth that is given. If I was nervous, everyone understood. If I couldn't prick, everyone understood and accepted. There were no reproaches. It was a huge support for me because I was on my own. They worked as a team and no one overlapped the other. Everyone had their own thing to do. I like to compare them to little angels all the time. It was such an emotional moment that I had never experienced in my life and they were there for me as a support to get me through it. I still remember them as special people with open hearts, because they are the people who were there for me at such an emotional moment.
Is there anything else you would like to mention?
I very much hope that there will be a hospice. Until you experience it, you cannot understand it. Those people who will need hospice care at some point in their lives and will have that experience will understand and appreciate the need for a hospice house.
I hope that people can donate to the hospice as quickly as they donated to Ukraine, because there are very cool and warm people living in Latvia. People need the care that a hospice provides. People need support in caring for their sick relatives and the hospice team can provide that.
If you ask what love is, it is hard to say. It is similar with the question of what hospice is. It is hard to say, but when hospice people are around, you just feel good. It was the best thing that could have happened to me and my mum. I am very happy that I managed to get home care with the support of the hospice.