Patients at Hospice Casa Sperantei in Romania are having their stories told, many for the first time, and preserved.
The Brasov-based hospice provides palliative care, a type of treatment that focuses on improving end-of-life care, including relief from suffering, for patients and their families. All the patients being cared for by the hospice are dealing with life-limiting diseases with no cure, such as cancer and HIV/AIDS. This kind of care, which for Hospice Casa Sperantei includes home care, inpatient units, an outpatient clinic and day centers, isn't widely available in Romania.
As part of a Rising Voices microgrant, the hospice is now also capturing and documenting their patients’ stories. Through the grant, they have trained doctors, nurses, and staff to use audio recording equipment, conduct interviews with the patients and their families and take photos, so they can directly share the patients’ stories and histories. Snippets of these interviews are now being posted in Romanian on a blog created by the hospice. To bring more awareness to the issue of palliative care, the hospice will also be blogging about this type of treatment, including its objectives, successes and challenges.
Malina Dumitrescu, the project's leader, had previously said that she hopes the patients’ stories will help people in similar situations, as well as the patients themselves. Many of the stories posted on the hospice's blog focus on the struggles faced when dealing with a disease, attempts at staying positive, and how grateful the patients are to receive attentive care at the hospice.
Ion's story, for example, discusses his difficulty in supporting himself and how he found a home at the hospice. Known as K.I. on the blog, the 51-year-old has rectal neoplasm (or cancer of the rectum). Ion is also Roma, many of who suffer the worst health conditions in the industrialized world. He says:
I had a stroke and my wife lost her apartment. I was very worried and eventually got sick. In time the cancer disease appeared. I am currently living in a wooden home without light, and it’s a disaster area where I live. I cannot work anymore, as I don’t have dexterity and my hand shakes from doing anything. I was paralyzed too at one point, right-side paralysis and then the left side. I’ve got seven children and 11 nephews. I’ve got a child with his leg cut off and another one who is handicapped.
I think that through a common cold my tonsils got inflated. I didn’t notice, but from there they hardened and became like an egg. I’ve had x-ray after x-ray. I even had an infection that started spewing. I was eventually diagnosed with cancer…The doctor told me the people from Hospice Casa Sperantei could help me and tell me everything. I asked the doctor if there is a cure for my disease and she said no. So I am stuck with this wound that is spewing continuously. My head hurts like there are thousands of ants up there and my back aches.
My sickness began five years ago — two years I was in neurology and for two years I’ve been going to Hospice. It’s better here, it’s like my mother’s home, people with heart, very kind, and they listen to your troubles. I’ve gotten used to it. I know that there is nothing I can do and I have to get over this too. I was angry, so angry in fact I think that is what caused my stroke. I know that cancer is dangerous. I know how much we struggled with my mother. As much as I get from God, I will live, and the rest, oh well.
Agata, known as L.A. on the blog, has been at the hospice since 2002. Single and 33 years old, she has a brain tumor. In her post she talks about growing up with another health condition.
I was in the 11th grade when multiple sclerosis began. I was paralyzed from the waist down. I had to learn everything from zero, how to be a whole person, because it is very important to accept who you are. I started learning how to use the wheelchair. In the meantime my little brother was growing up. My parents divorced and so I learned how to do everything — how to be a housewife and sick and a sister. But the fact that I have taken care of my brother helped me overcome my impasse and that feeling of loneliness.
She goes on to talk about how her current diagnosis changed her life and helped her feel like a normal person again:
The diagnosis relieved my life, because I knew what I was fighting. Up 'till then I was on the verge of saying that all the symptoms were only psychological. Many people have left me, thinking that everything was fictive.
Gabriel, R.G. on the blog, also talks about his disease and his difficulties in dealing with a recent setback. The 64-year-old has leukemia and has been at the hospice since 2006. In this post he says:
My disease began last year with partial paralysis. I did 10 sessions at the hospital and I felt like everything was changing for the good. Three days later, I was in the kitchen and I fell down. Since then no more stability and I am very weakened. Firstly it affected me in a psychological way, like I was being destroyed. I was on the verge of disappearing, I wanted anything to happen, just to escape, because it is torture, a very hard torture.
Gheorghe, called M.G. on the blog, also shares stories of struggling with his illness. He had larynx neoplasm (cancer of the larynx or the voice box). The 59-year-old was divorced and lived alone, as his daughter lives aboard. In this post he says:
The staff here [at the hospice] are obviously interested in the patient, they are conscience-stricken by the patient. In other places they come to give you the pill and even that as fast as they can, because they have other places to go to as well. Whilst here, they have time to tend to the patients…
…I don’t know but it’s as if I have no more feelings, as if I’ve been discouraged, as if I live for nothing now. If death were to take me now I wouldn’t be sorry, I would no longer torment others around me with my suffering. There aren’t any hopes. It is obviously pointless. I want to move forward, but even after eight months of treatment there are only problems and problems. I don’t know this disease's prognosis, whether somebody has made a recovery. I can’t tell, I haven’t heard anyone talk about it. I haven’t asked either, but I haven’t heard.
My greatest fear is not being able to move myself. To lie in bed and to have no one come and bring you a glass of water, then it’s really bad. And this is exactly what it’s going to be, and more, I say. The loneliness, that’s that. We’ll see, we’ll figure it out somehow. I feel more upset now that I’m ill, but what can we do about it. I keep moving forward. I can see, practically, that it isn’t good.
Gheorghe passed away in February after he shared his story with Hospice Casa Sperantei. He had been at the hospice for two years.
Wow, this is really powerful stuff.
Boy, it’s going to be emotionally trying to follow bloggers like Gheorghe only to have them abruptly pass on, isn’t it? I suppose that is one of the challenges of working in a hospice though – the willingness to make an emotional connection with each resident even though that connection will eventually cause the pain of loss. I look forward to reading more translated testimonies from the residents. It would be great to learn more not just about their diseases, but also their lives and the communities where they are from. I know so little about Romania, but it seems like the country has gone through incredible amounts of change over the past twenty years since the fall of Ceauşescu.
This post is now in spanish:
Este post está ahor en español: