Home Is Where The Heart Is

I spent a good part of last year scurrying between a residential nursing home and a hospital, because at 93 years of age, my once placid and peaceful grandmother, who had brought up seven children and spoilt thirteen grandchildren to bits, had, overnight, entered a perpetual rage of anger and pain.

Her age, coupled with overmedication and understaffing at the hospital, required that her family organises a 24 hour vigil by her bed. This wasn’t just to keep her company during her last days, but an absolute necessity in order to avoid further suffering.

For the life of them, the medical staff could not figure out what was wrong with grandma, and no medication, including morphine, was relieving her pain. As frustrating as it was, the only thing we could do was to stay by her side day and night, in order to try to soothe her the best way we could. It took a month of agony until she let go and rest in peace.

Before this ugly turn of events, my grandmother had been quite contently living in a residential home for the elderly, where two of her very best friends were a married couple called Censu and Carmena Said. Unlike what one would expect, Censu and Carmena were not upset about having to live in residential care, on the contrary, at 70 years of age and after 50 years of marriage, Censu and Carmena had voluntarily signed themselves into a home of their choice. Although their decision went against their only son’s wishes, the merry couple have been content in residential care for the past eight years. To date, they are still independent and able, so why did they do it?

“Throughout our marriage Carmena had to go through a lot of things because of me,” says Censu with smiling eyes. “For some reason I’ve always had a knack of getting into trouble, mainly physical brawls. Over the years I gave my wife lots to worry about. There were many days when she thought that I might not make it home in one piece, but I was lucky.”

“Censu was always living on the wild side of life,” continues Carmena with a nostalgic look in her eyes. “Although always a total gentleman at home, as a young man, my husband was a magnet for danger. It wasn’t that he went out looking for trouble but it seemed to follow him around wherever he went.”

“It was a time of political upheaval,” explains Censu with naughty eyes. “I was young, strong, a staunch activist and had a short fuse. But as I grew older I realised that it was time to stop the shenanigans and take care of my eternally supportive wife.”

“When Censu suggested we sign ourselves into a home for the elderly I was totally against the idea, as was our only son. Considering our age we were both relatively healthy and independent, so I could not see why he would want to do such a thing,” explains Carmena.

“I’ve always enjoyed spending most of my time outdoors,” Censu jumps in. “I might be 77 years old but I still wake up at 5am to go for a long walk first thing in the morning. Rain or shine, I leave home at dawn, and when the hunting season is open I’m out the door even earlier.”

Censu pauses for a while, looks at his wife who is knitting a scarf for their daughter in law, and continues with an endearing voice – “About ten years ago Carmena started having problems with her legs, but like most women she’d insist on cleaning the house, cooking and doing all the things that she used to do when she was younger. I kept asking her to wait for me to return home so that I could help her do certain things, but she’s more hard headed than a bull sometimes.”

Carmena looks up, smiles at her husband, and turns her head to discreetly wink at me. Whilst Censu acknowledges her weak attempt to discredit him, he continues with a knowing smile, “…being out of the house all day, I used to be worried sick about her. My greatest fear was of getting home one day to find her sprawled all over the floor with a broken leg. I simply had to do something about it, and it had to be soon. So despite her objections I signed us up for a couple’s room at the nearest home for the elderly.”

Today Carmena and Censu share a sizeable double bedroom, part of which has been transformed into a small kitchen. They also share an en suite bathroom and a beautiful terrace overlooking their very first marital home. “Although there are many services that we can make use of here, we prefer to buy and cook our own food. We also wash our own clothes by hand. We are here simply because we feel safer living as part of a community of people. It’s also consoling to know that help, should we need it, is just outside our door,” says Carmena.

“It was not a decision that I took lightly” says Carmena. I still miss our big house in Rabat and I insist that Censu takes me for a visit at least once a month. “I just go into the front room, walk around a little bit and then go back out again. Although we now live in a confined space compared to what we were used to in our big house, we’re comfortable enough and I think it was the right decision to take. It took guts but Censu was never lacking in that!”

“Since I was one of twenty siblings I’ve always been used to living with other people” she explains. “It is not easy when you find yourself alone after so many years raising a family. I suppose Censu and I are lucky to still have each other, and to still be in relatively good physical and mental health. I don’t even want to think what would happen to had we to lose each other.”

“I adapt very easily” says Censu proudly. Carmena finds it harder to adapt, but my military training helps me get used to things quickly. I know that people think we’re crazy to have left our home in Rabat when we are still capable of taking care of ourselves, but there’s nothing worth more than peace of mind, and being here is the only way we can have that.”

Annabelle or as she is more endearingly known as – Annie– spent most of her adult life helping her parents raise her six siblings, taking care of nephews and nieces, and pursuing a successful career within the civil service. Naturally nurturing, Annie is everyone’s favourite sister and aunt, whose brothers, sisters, nephews and nieces would unquestionably cross rivers and climb proverbial mountains for their zija Annie.

True to her name, Annie is a beautiful woman in every sense of the word. Even at sixty two, her deep set eyes, her contagious smile, and her impeccable demeanor, had me wondering just how many suitors she must have had in her younger years. When asked if she feels that she’s missed out on having a family of her own, Annie shakes her head and rebuts, “I never felt the need to get married because I’ve always been very fulfilled with taking care of my younger brothers, and I honestly feel like my nephews and nieces are my own children.”

When Annie was in her early forties, her youngest brother John suddenly passed away at the age of 28. “It was a tragic electrocution accident. He was so young and had only been married for four months,” narrates Annie with tears in her eyes. “His death was a huge blow for all of us, and I don’t think that my parents ever fully recovered.”

“Although John died almost instantly, our mother could never get over the thought that her youngest son had died alone. But I honestly believe that John’s death was such a huge shock that it significantly affected the health of both my parents.”

“My father had always been the rock of the family, always full of life and energy, but soon after John’s death he started having problems with his heart. Eventually he had to have a pacemaker implanted, and after that he developed an intestinal condition which required an operation. Unfortunately the operation was not successful and was followed by six years of weekly blood transfusions.”

“My father hated hospitals. He hated them so much that throughout his life he had never gone to visit anyone except for his beloved sister in law Carrie. And now, because of his condition my eldest brother and I would spend six whole years driving him to hospital every single Sunday morning for a blood transfusion. Then one night, after much anguish, he suffered a heart attack in his sleep and died the next day. I’m consoled with the thought that our father died with all his children praying around his bed.”

“For some years after my father’s death I lived with my mother harmoniously, more like friends than like mother and daughter. She’d regularly join me and my brothers and sister whenever we went out on Saturday nights, we’d go to mass together, and we even went abroad on long holidays, just the two of us. Then one day, about four years ago, we were on holiday in Wales, and she nodded off during the coach trip just before arriving at our hotel. When she woke up she thought I was a stranger and spent two whole days not recognising me. She was 82 years of age at the time and nothing happened again until a year later, when she started having hallucinations – one of the many symptoms of Dementia. I immediately sought medical help and she was prescribed some medicinals. She stabilised for another year but then the situation progressed very fast . Eventually it became very difficult for me to handle her alone. My brothers and sisters started advising me to sign her up into a residential home for the elderly but I wouldn’t consider it for a minute.”

“I knew the situation was getting worse but I remembered visiting my aunt in a residential home, and though she did not lack any care I always felt that she was losing her identity. Based on that experience I had sworn that I would never let other people take care of my mother.”

“Over the months however, my mother’s Dementia started to get worse, and she could not be left alone even for a few seconds. At the time I was still working within the civil service and I had one year to go for my pension. So, for the next 12 months, I woke her up at 5:30am, washed her and dressed her, and took her to my sister or brother, to look after her. I must say that I would not have managed without their support and help. Then I used to pick her up on my way back from work. It felt so very cruel waking her up at such an early hour but this was the only way I could get to work on time.”

“Then she also started having sleepless nights. I would spend all night awake with her and still have to go to work at 7am the next morning. Though the situation was unbearable I thought that once I stopped working, I would cope better. All along I kept resisting the idea of signing her into residential care.”

“My manager at the office was very understanding. She supported me by facilitating a teleworking system with which in the afternoons and evenings I could work from home. Sometimes I would put my mum to bed and go back downstairs to work. A few hours later, I’d go back up to sleep, only to find that she had woken up, brought out all our clothes from the wardrobe and spread them all over the bed. Seeing that at that hour I just wanted to scream, but didn’t as it would have only disturbed my mother more and kept her awake all night worrying what she had done wrong.”

“All this was coupled up with a daily bout of panic. At around 5pm she would put on the first coat that came to hand and insist on going to visit her mother, who has obviously passed away decades ago. No amount of cajoling or explaining would calm her down. Sometimes I would manage to distract her by taking her to mass, but it didn’t always work and there were times when it took hours to pacify her.

“Up to this point I was still adamantly against signing her into a home, and I had not realised what a toll this was taking on my physical and mental health. The only thing I was aware of missing out on was travelling. Then, one day, my sister in law convinced me to go abroad with her and my brother. In order to do this I had to temporarily sign mum into respite care. I spent months checking out all the elderly homes but none of the private ones would sign her up for just a few days. I finally agreed on signing her up at the respite centre at San Vincenz De Paul, but as soon as I was advised to admit her almost a week before I actually left the island (in order to make sure that she’d settle in), I almost got cold feet again. The thought that the family would be having their usual Friday reunion without her in the house was tearing me apart.”

“Closer to the date of my departure, she was out walking with my brother when she fell and unfortunately fractured her hip bone. This obviously necessitated surgery and a long rehabilitation period. I was about to cancel my flight in order to stay with her, but my siblings convinced me to go anyway. As hard as it was to let go, I did, and it was then that I finally I realised what a weight I had been carrying for so long. It was then that it became crystal clear that it couldn’t go on for much longer without it affecting my health.”

“So, on my return I finally took the plunge and with a wretched heart signed my mother up for permanent residential care. Although against my wishes, I feel that I had no choice. I still fill up a lot of my time by taking care of her, and in a way I appease my ‘guilt’ by cooking for her and visiting her twice a day. It’s like through the years the roles have been reversed and she’s become the problem child whom I cannot let go of.”

“My mother seems happy and content, but knowing how pragmatic she was in her younger years, and how she never made the slightest fuss about having to care for seven children and so many grand children, it is very hard to let others take care of her. But the truth is I’m not getting any younger, and simply had to give in to the fact that even though my brothers and sister really help out and do their best to share the burden, mum needs more care than we can provide her with.”

“The centre that we’ve signed her into is specialised in the care of Dementia patients, so hopefully it will help improve or maintain her mental state with the right approach and for as long as I’m alive her well being will remain my number one concern.”

First published on Pink Magazine March 2010