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When the beginning and the end of life meet

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Topics: 
approaches to dementia care, communication, dementia awareness

I started working in the research project on dementia at the time of my life when I was bringing up my little daughter, Maria, who is now sixteen months old. It’s not by accident, perhaps, that I’ve found myself in the situation where the beginning and the end of life meet. While I’m coding the interviews conducted with people dealing with dementia on professional and personal level, I’m asking myself what it means to be a carer and what we can learn about the young and the old age when we experience them at the same time.

In my husband’s Italian family there’s an old lady, also Maria, called by everyone La Nonna. When I met her for the first time, she was approaching 90. This year she reached 102. When I started visiting the Neapolitan family, my Italian was almost non-existent. I could politely introduce myself to Nonna Maria, saying what my name was and that I was Polish, and that was all. As my language skills improved over the years, the communication skills of Maria deteriorated. I regret we never managed to have a proper conversation. By the time I was able to express myself in Italian, Maria was caught up in loops of repetition, asking the same questions all over again. We would meet over Christmas. The first two or three minutes seemed ordinary as I would be asked what my name was again, where I came from and which of the men at the table was my husband. Then the relationships had to be established: my husband was the older brother of Maria’s granddaughter’s husband. And then it would continue: What’s your name? Where are you from? Who’s your husband? Whose brother is he? Who’s my granddaughter’s husband? Ah, this young handsome man? Va bene, va bene. And then again, from the start. And again. Maria’s daughter would try to excuse her, even though there was no need. I would answer all the questions again and again. I had patience because I was meeting Maria only a few times per year. Maria’s daughter, now in her mid-seventies, taking care of her mother for over twenty years, every day and every night, was losing her patience. She would lose her temper sometimes and shout, which was hardly surprising. She was exhausted and she needed help.

I also needed help while I was taking care of my baby. My growing tiredness and irritation were a clear indicator. Maria often didn’t sleep during the night. With her floppy larynx, she had problems breathing. Then there were tonsillitis, infections and teething. The day after a sleepless night is tough. After a while, you need to involve other people as without sleep it’s impossible to be a good carer.

Also Nonna Maria had problems to sleep during the night. She would need help for her frequent visits to bathroom, so her daughter wouldn’t sleep either. In the South of Italy, there is not much on offer regarding caring services. Nothing really for dementia patients. No respite care, no care packages. The expectation is that this is the family who take up the role of carers. To be more precise, the women in the family: wives, sisters and daughters. Nonna Maria has a son as well, living next door. An energetic man in his late sixties, who long ago decided that the care is his older sister’s business. No job division between them, no discussions and no shared decision-making. Instead, other women were called to help. Badanti: Polish and Ukrainian women who would live with the families and do the 24-hour caring work. In the week they would have two afternoons free: on Thursdays and on Sundays. Otherwise, they would be available all the time. An exhausting job. Often paid in black. Nonna Maria would have many of them over the years. They would come and go. Returning to their own families or simply changing Italian employers. As residential care is not easily acceptable in the Mediterranean context, Eastern European badanti became thus an institution, which imperfectly fills the caring gap. 

They would cope together. Nonna Maria, her daughter, and a migrant carer. Cold seasons in the mainland, hot seasons by the sea. Christmases, Easters and birthdays with the large family. I remember how elegant Nonna Maria was. Dressed all in black, with a fur collar (there was certainly some animal involved) and a string of pearls. White hair perfectly done thanks to her daughter, a pair of silver-rimmed glasses. Seated at the top of the table, she was the personification of a different epoch. She would sometimes recite the poetry she remembered from school. Long pieces in old Italian I could hardly understand. Otherwise, she would ask the same questions, all over again. And in between she would make a comment that was perfectly accurate. And often very funny as she did have a good sense of humour. After she reached 100, she started withdrawing, becoming more and more absent. She would sit at the table without saying a word. She ate very little and felt cold all the time. In the room full of people, she would sit close to the fireplace, in her beautiful black winter coat. But she did get very interested when she saw me pregnant. She congratulated me and wished me a quick and easy labour. And that was the time she hardly spoke.

A few months later she met my baby and something opened in her. She took little Maria’s hand and started the baby talk, with its various sweet sounds. My baby smiled. I was looking at them, two Marias, a hundred years apart, linked by this very special human bond. A few months later Nonna Maria’s great granddaughter was born. And again we saw this beautiful connection between the oldest and youngest generation. What we all wanted were the words as we rely heavily on verbal communication. And when the words failed us, we didn’t try other means. The arrival of the two baby girls showed us that hand-holding is a powerful way to communicate that we are here for each other.

Nonna Maria died three weeks ago. At home, with her family. The sadness was mixed with relief. And then guilt as we are not supposed to feel relieved when somebody dies. Maria’s daughter is like a teenager now trying to make the most of her life. She wants to travel and go out, meeting people and enjoying her food and drink. She is on holiday now. She is free.

Baby Maria enjoys her summer, exploring the world and doing all the wonderful things for the first time. I’m happy to be her mum and her carer. One day I’ll get old. Would I agree that Maria becomes my carer? No. I hope there will be other options. 

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