I have noticed that people like these two organisations - "Hospiss LV" and "Hospiss Māja", how do they differ?

"Hospiss LV is a public benefit organisation whose aim is primarily to educate and inform the public about why hospice care is needed in Latvia, for example, the forum "For a dignified death" held in March was organised by Hospiss LV, Secondly, we want to remove the stigma from the topic of death, to encourage people not to be afraid to talk about it, because we have a very prejudiced society, which is why Hospiss LV will participate in the LAMPA talk festival with its "Death Café". The other organisation, Hospiss Māja, provides hospice care for dying people at home, and we also ran a pilot project funded by the Ministry of Welfare, which ended last December, and we cared for 136 people. Now that the state funding has run out, we can only provide our services on a fee-paying basis, unfortunately most people cannot afford the full cost, so it is the donors of Hospiss LV who are helping several dying people to live out their last days with dignity.

You mentioned that we have a very prejudiced society. Have you always spoken freely about death?

I have my own story... I know that people shy away from people who have faced death, because I experienced it myself when my little boy died at the age of four days. At that time, my only wish was to talk to someone about it, but there was no one. There was no chaplain or psychologist in the hospital, only scribbled sedatives to calm me down, that's it... I felt people around me were avoiding me. I understand why. Because they didn't know what to say, how to act, how to support, nobody has that skill. So it was better not to approach. Nobody thought that the most important thing they could do to help me was to talk to me from the heart. That was all I wanted... I quickly caught myself thinking that I was thinking more about making the person next to me feel uncomfortable in my presence, and not at all about the right to feel unhappy or bad. It is now 28 years later, but nothing much has changed in society. Yes, we can go to therapists, but can we talk about it with our family and friends? That is why I think it is extremely important for us as a society to talk freely about both death and mourning, because it is a natural process, an essential stage of life, and it affects everyone sooner or later.

Jeanette, my condolences and thanks for sharing this painful experience. Because as you said yourself, if we do not talk about death, nothing will change.

I believe that nothing in life happens by chance, if you asked me last January when I started working here how I ended up at Hospiss LV, I would say - by chance, but now I realise that it wasn't. I had to get here. This is where I met Daci (Chaplain Daci Zušmani), and in one conversation I also told them about losing my little boy. Dace offered me her help as a grief therapist. To be honest, I was quite sceptical about all kinds of therapies, psychotherapy, because I thought that people could cope with everything on their own, I was convinced that I had already healed everything, that I was fine! I have always considered myself a mentally strong person. I was shocked to discover that the weight of the loss had not gone anywhere, that it was a huge burden that I had been carrying with me all these years. Dace helped me a lot. And now, after therapy, I often wonder what it would have been like if I had received this kind of help then - 28 years ago.

You could have finally spoken to someone about it yourself.

Exactly. Because as a society, not only do we not talk about it ourselves, we don't let others talk about it either! I remember my mother, who was a respectable 97 years old, saying from time to time: "oh, I don't want to die, I could live and live!" Then Mum used to say involuntarily: "what are you talking about dying, you will live". Then I thought, why don't we let people talk about it, why do we move away? melt? Maybe it's because we are afraid of the subject ourselves, so God forbid someone brings it up, you feel uncomfortable talking about it, we don't know what to say and how to say it. Sometimes it seems that we have a superstition - if you talk about death out loud, you will invoke it.

Since the folklore group "Skandenieki" visited "Hospiss Draugu klubs", with whom we even went to bedib games, I wondered - ancient Latvians talked about their death and dying. When did we put this stigma on?

I also remember my childhood, when we used to go to the countryside to my mother's relatives in Rūjiena, and there were coffins in everyone's coffins, Old people were thinking about death, preparing for it. It was not so long ago, the end of the seventies. But then everything changed rapidly, including values, and young people left the countryside with the idea of... I don't know - perhaps looking for a happier life? Because now the countryside is extinct! And so have the old traditions and values. We have lost them. So I was happy that my son and his wife wanted to get married according to the old Latvian traditions - with the ritual of alignment - it was a fantastic wedding! We used to talk about Latvianness at home, it is important to me, but we are not active observers of ancient rituals.

We dream and plan weddings, but have you thought about how you would like to die?

Not that, but I know that when I die, I'd like it to be like in Japan - my relatives would put my ashes in a special eco-bag, bury them in the ground somewhere in the forest and put a tree on top. Without pomp and circumstance. Because who needs a funeral? Not for the deceased, it's for the ambitions and wishes of the relatives.

Let's be honest, a large funeral with an oak coffin and lavishly laid tables costs the same as, say, ten days of quality hospice care. It makes us think about what is more important to us - saving money for a funeral or giving up for the last days of our lives. After all, most patients live only a few weeks in hospice care.

Yes, these are facts: in our pilot project, 35% of clients died within a week, 22.8% - between eight and fifteen days. So, sixty percent live up to two weeks. If you calculate it in such a way that it may be only ten days or even less, it is not that expensive. Of course, when you first hear that a day of care costs between €80 and €130 a day (depending on the care needed), you want to shake your head, because many people are already looking ahead to the long term.

Probably because people still confuse palliative care with hospice care.

Hospice care is the final stage of palliative care, when survival is not expected to exceed six months. Yes, hospice is about death, but it is not about death, it is about living people in desperate need of help. Hospice gives dying people a chance to live their last moments with a focus on life - to talk things out with their loved ones, to see their friends, to be at peace with themselves.

What happens now to a person who can no longer be helped by medicine?

A person is discharged home from a palliative care unit, where they can stay for up to ten days, with the recommendation: continue palliative care at home. What does this mean? Personally, I think it's an attempt to be recovered system, because if you look at some of the services available in the country, it is possible to receive palliative care at home in Latvia. The family doctor has to make a referral that a nurse can come to the patient at a certain time, put on the system, the medication go to etc. But she will come when she can, on a schedule, not when the patient needs her - but in hospice care, a patient's condition can change so rapidly that it will never coincide with the doctor's schedule. Moreover, in our experience, the worst things usually happen to people either at night or at weekends, when they cannot be helped. People die most in the morning, between 4 and 6 a.m. Who is going to pick up the phone or drive?

Are you saying that the Hospice House carer will drive at night?

Even though they don't have to work at night, the carers literally bond with these families, so much so that they run when they are called, no matter if it's a day off or the night hours, catch a taxi and lido. One of the carers recently shared how she keeps in touch with almost all the members of the families she cares for, congratulating each other on anniversaries, even meeting each other. This is normal in hospice care, contact is broken later anyway, because when a person accepts the passing of a loved one, they are ready to let go of everyone else who was connected to them.

You have also experienced what it is like to have a loved one die at home for a long time.

My grandmother had dementia, so my mother took my elder sister to live with her, but that was probably wrong, because before she died she regularly said that all she wanted was to die in her own home, because she didn't recognise that environment. When I needed to go and look after her we were all on the verge of losing our minds, the GP never came to see us, when Mum rang he immediately asked "what can I prescribe for you?" And he did. After that, however, it turned out that the prescribed doses did not calm the mind, but made it even more agitated. It is not so easy to move an old person when the mind is still clouded, it was a complete nightmare. The last two weeks were the craziest, because it is not clear what happens when a person dies - when he remains helpless, completely asleep, but various strange reactions appearthen the temperature rises, then falls, then the pressure is high, then low, in that agony one night an oma, who was no longer walking, got to her feet and thought she could walk and fell face down on the floor, hit her nose, her head, her mouth was bleeding. Learn more. Because we don't know and understand the processes that take place when a person dies - it's not that they are just asleep, they have a different state of consciousness. In fact, when he sleeps in an ordinary bed, he is even in danger. After falling in bed for the free party we pushed the wardrobe in and put big, heavy chairs together, she could push it off with one leg. A dying person sometimes has supernatural powers that a healthy person does not have. One day, it was so crazy that I called an ambulance three times. Because the first thing that comes to mind when you don't know where to look for help is an ambulance. I asked them to come, but they still didn't take me to the hospital, well, the third time they did, but four hours later they called and said - come back, she's fine! Oma was calling her mum's name all day and night, not exaggerating - calling her name all the time, it was complete madness. A loved one who cares for someone like that on a daily basis does not get a minute's rest. Almost every family has such severe cases of care. Everyone is suffering. But when a loved one dies, all the horrors that had to be experienced seem to disappear and be forgotten. We don't talk about it any more. But at the time, it would have been important to at least have had a telephone number to call to tell us how the dying process was going, because that would have given us peace of mind.

Would a hospice have helped here?

Hospice patients are also patients with neurological diagnoses, and I think that in the last two weeks, when the dying process has started, the presence of a carer would have been a blessing, because the carer knows the stages of death, knows what is happening to the person in each of them. Even if it had been a call to the hospice Mobile Brigadeconsisting of a social worker, a carer and a medical doctor who go to the patient and give advice, regardless of the patient's state of health, the patient does not have to be dying because Mobile team can advise on how to position, lift, wash, etc. Because we don't know that either! We also bought some pampers on the advice of the pharmacist at the pharmacy, but it turned out that they are not suitable for sleeping people! Such nuances... What body care products are needed, because dying people's skin is so dry and transparent like paper. How to wash the hair of a sleeping person? This can be shown and done by the carer. I can see from the Hospice House calls at the moment that the situation is the craziest with analgesia, people have bought a ton of medicine at home but do not understand how to use it, and the effects are mixed. Because there are no specialists to advise on it. The other big problem is the problem of bedsores, how they occur, how to take care of them. It doesn't even occur to people what holes can appear in the skin just from sleeping.

And what does Hospiss Māja Hospice Care mean?

The first visit to the client is made by a social worker together with a medical doctor to assess the patient's condition and also the conditions, what is needed at home, for example a functional bed, a toilet chair, a feeding table or an oxygen concentrator, to relieve the patient's suffering as much as possible and to be able to provide comfortable care, i.e. it is important to think about the caregiver too. Unfortunately, we have had cases where we cannot take someone into our care because the family refuses a functional bed, but we cannot care for them properly if they are sleeping on a sofa.

Together with the nurse, a care plan is drawn up to determine how much log in tomedical professionals, a palliative care doctor provides consultations. A carer is with the patient for eight hours a day, which means they can get on with their lives, go to work and look after their children. Carers can also change, because there has to be compatibility between the patient and the carer - this is very important!

This is in line with the Hospiss LV motto - a dying person has the right to choose! But volunteers also tend to be involved in care!

Yes, even in the evenings, go and read something in front of me. I vividly remember our client, a 35-year-old woman who had unfortunately spent a lot of money trying to cure herself with alternative medicine... She lived all alone, with her pet rabbit. She had a panic fear of the dark, so volunteers were organised to sit beside her in the evenings until she fell asleep.

You are emotionally close to death every day, you hear these stories, how can you bear it?

How we have wept for people we have never even seen! Because you know so much information, you follow and feel how everything is going, and when a person dies, you feel that your loved one is gone. When young people die, it's the hardest. Especially for carers, when they are looking after patients who are their children's age, it is very hard emotionally, there are cases that almost to be sent to corks, after such things you need to rest, to process what has happened. You have to be very careful with burnout in this kind of work. When young people die, it seems an injustice ... Unfortunately, cancer take younger and younger people.

We had a patient - a man my age, a businessman, a father of three - who was developing the disease very rapidly. But he had a very supportive family, the whole family was like a single unit at that end stage. He accepted that he was dying, his wife had also come to terms with herself and they did not hide anything from their children, the man managed to get his eldest daughter into his business, to hand things over, everything was sorted out. One of the last text messages he wrote to our colleague was: we all watch "Paw on the Heart" together and have absolute peace…  (A pause for silence and tears for Jeannette). It's a hospice, we help with the care so that the family can say goodbye peacefully, still be together. 

You are not a carer, you are a supervisor to make the system work, or do you tend to the patients yourself?

Most people don't want an outsider visiting them, but I have been to a few, and in March I was with a young woman who invited me, although I can't hide the fact that I was scared to meet her because I knew what state she was in. We had gone from the Hospice to Bulduri to pick up the widows for 8 March, I went with them to visit her, and when the carer saw them, her first thought was: when the pansies bloom, she will be gone. And that's what happened... It was a very difficult situation. She has a 14-year-old daughter who she brought up on her own, her mother lives in a small town, so the child had to shoulder all the burden of care...

A 14-year-old girl caring for her mother alone?

The patient was an intelligent, educated woman with several university degrees and a university job, but unfortunately the diagnosis was delayed and everything ended very quickly. The girl's father lives abroad with a young family, and they hid this fact for a long time for fear that the father might make the daughter move. The apartment had wood heating, two stoves, and they regularly had to buy bags of firewood and carry them to the apartment. But she managed everything, without any whining, the main thing for her was to take care of her mother.

But she has to learn!

And they did it brilliantly! It is most amazing that children who find themselves in such situations do not get off track, on the contrary, they mature very quickly, grow up and realise their importance in their parent's life. Wonderful children who know how to take care of their parents. There was also an 18-year-old boy, in his final year of high school, who would run to his mother's house to change his nappies at break time. The question is, should a son do that? But they were worried that if anyone found out about it, they would put mum in a nursing home. That's what the children fear most - that families will be torn apart. Personally, I also think that in a situation like this, where a parent is close to death and the child is independent enough (I'm not talking about seven year olds, of course) unnecessarily involve the social services, which will do as the law requires without looking into the situation and the importance of saying goodbye and spending the last moments together. Of course, with the caveat that hospice care is available and the heavy burden is lifted from the child's shoulders. Because at that point, would it really be better that they were separated? Does this child, who is about to lose her mother, need the care of a stranger if she is placed with a strange family or in a crisis centre? Nobody would want that. Because he is worried about his parents. In this particular situation, the mother ended up in the palliative care ward of the hospital so that the young man could pass his exams.

Now you've made me blush... Children want to be with their parents at a time like this. And considering how many divorced families there are in Latvia with only one parent!

Yes, children approach this with more responsibility than spouses sometimes... There is another story about a girl whose mother very quickly gone. We received a call from a neighbour who saw that her mother was very ill and that her daughter was in her care, although there was a father and an older sister in the family who did not take things very well and were convinced that she would recover and everything would be fine. When our social worker got in touch, the girl said: yes, it is difficult, but she is coping. She did not need physical help so much as emotional help - someone to talk to, someone to advise her on the right way to do things, someone to call at any time if necessary. Our team went there straight away and it was clear to them from what they saw that Mum only had a few days left... And so she did. But at least the daughter could be there for her mum as a daughter, not as a carer. And it took away the huge psychological strain that she was under - is she doing the right thing, is she caring properly? Because she did it according to the information she found on the internet. The girl was by her mother's side until the moment of death. After that, she enrolled herself in therapy with our clinical psychologist, which was state-funded at the time of the pilot project, and started a course at RSU to become a doctor in the future.

Do you believe that hospice care will be state-funded and there will be no more stories like this?

Absolutely, I have no doubt about that. It's just a matter of time. But for now, we can only help in such situations with the help of the public, namely donors. 

Žanete Jansone, Member of the Board of HOSPISS HOUSE. Also:

*Fresh Grandma. Most of her free time is spent with her granddaughters. "Sometimes I take her out of kindergarten on Friday evenings, on Sundays return to for parents."

*Mistress of the lovely Labrador Rio

*Economic. Although she says she doesn't like to work in the kitchen, she does it often (also at Hospice House), and her signature dish - fixed seafood paella.

*Patriot. She lived in Barcelona for a while because her husband worked there, but she didn't settle there and doesn't want to go back. "I don't like the yellow-brown colour that is all around me in Spain. In Latvia, everything is green, lush and beautiful. Green is not my favourite colour, but it is lush and the colour of life."