Stories of care

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STORIES OF CARE

FROM ANTHROPOLOGY STUDENTS, QUEENS UNIVERSITY BELFAST

Female, 20 (20 at the time of the event described)
When I returned home for Christmas last year I was looking forward to seeing my family and had had a very fun, enjoyable first term. My parents picked me up from the airport and I basked in a rare thirty minutes of their undivided attention as I relayed all my university adventures, my very successful essay results and my happiness at finding a close friend. Almost immediately upon walking into the house it was obvious we were in another crisis, my brother Ben began shouting at my mother. He had stolen food while my parents had been collecting me, and after he tried to commit suicide in front of our other brother James while my parents were out with me several years ago, I worried straight away about James. Luckily James had removed himself and was in some angst over unrequited teenage love, (he has yet to produce poetry).

My autistic brother Ben is 17 months younger than me, well over six foot tall and 18 stone on last weight check, he has a chromosome abnormality of XYY, finger webbing, and a variety of unidentifiable, contributory issues. He has a seemingly insatiable appetite for food and steals everything edible he possibly can if not locked away (the food that is), every door in the house has a lock on it and after Ben stole £3,000 of my parents money last Easter, all money, credit/debit cards, wallets and purses have to be locked away or kept on our person. We all have a bunch of keys which seem to increase every week as Dad fits more doors with locks, I wear mine around my neck and my Mum safety pins hers inside her bra. Ben would steal from our pockets.

It transpired that Ben was worried and anxious about Christmas, he is very resistant to all family social occasions and tends to physicalize his anxiety through violent and aggressive measures. In a brief conversation with my Mum and Ben in the kitchen I decided Ben’s anxiety might be assuaged if I took him Christmas shopping, he’d been worrying about going with Mum and I knew I could step in and help. The following morning I made sure he had done his sandals up, was wearing deodorant, had both his wallet and his debit card along with his autism awareness card and young persons railway card. Getting him to take a coat is beyond my capabilities and he has long learned it is his problem if he gets cold. Mum had given me £30 for Ben to spend on Christmas presents and I knew we had to shop quickly otherwise he would get frustrated and angry. The first shop we came to was a charity shop which I dived into and had a good snoop around for presents. I picked a silky blue bag out for Ben to get for me, ushered him towards the ties for Dad (a polar bear design was chosen), the Stephen King books for James and I even managed to get some books for myself! Next stop was a jewellery shop where Ben himself picked out some earrings for Mum. We then met James for lunch and I felt extremely pleased with myself for getting Ben so efficiently and quickly sorted, James donated £10 towards a lunch I would usually have paid for and as Ben ordered the most expensive thing off the menu- as usual- I was grateful. We are a very close set of siblings and James would be counted among my best friends, there is hardly ever arguing (aside from Ben’s daily aggressive outbursts) or sibling rivalry and sometimes I think we’re exceptionally lucky.

Mum was very happy Ben was now sorted for Christmas and congratulated me on a good effort, I could tell she was pleased and knew her encouragement and gratitude were genuine but I worry sometimes that she perhaps envies my ease with Ben as he singles her out for rebellion and aggression. I know how she feels as when our parents are away Ben treats me as the parent and I get all the aggression and violence usually metted out to me doubled.

The following day Ben complained of tooth ache and Dad decided he needed an emergency dentist appointment, Ben refuses to clean his teeth along with refusing to wash his hair or body unless coerced to. Mum and Dad anxiously tried to decide who could take time off work to drive and support him and I offered to drive him. The Monday before Christmas I again made sure Ben’s sandals were done up and that he had his house keys with him, we drove to the dentist and as England had a white Christmas in 2009 the roads were slippery, icy and confusing. Ben directed me with his excellent memory and when the car skidded into a junction he made no negative comment about my driving and trusted me to navigate the ice- while providing advice- without panicking me. Ben hates the dentist but shows no fear, rather he hates the social contact and the anxiety about social communication, he is very sensitive to how other people perceive him and worries about offending anyone as he struggles to understand simple bodylanguage and social norms. He asked me to go in to the dentists room with him and I was relieved to see our old-fashioned, white haired, tanned dentist had been temporarily replaced by a smiling Asian woman who had no issue with my presence and intelligently understood that this six foot man would be spoken for by his small sister. It was determined that Bens tooth needed to be removed and Ben asked me to remain with him in the dentists room while the dentist performed the procedure. I marvelled at his fearlessness whilst hiding how embarrassed I was that I could smell his body odour from three meters away with this lovely dentist leaning right over him. The procedure went well and I can safely say it was worse for me to watch than him to endure, he is very resilient and trusting.

Our grandmother annually organises a family meal for Dad’s side of the family a few days before Christmas, this year we were going to a Chinese restaurant which amused Mum and I. With his freshly removed tooth Ben was frequently complaining and resisted the social event as passionately as his pained state allowed. Although he usually finds some way to cause distress, concern and worry on social occasions it remains important to include him whenever possible, he is a cheery, sociable and very funny character when he feels comfortable and socially unthreatened- this is rare but cherished. As I looked at him that morning, the smell of his body odour at the dentists swirling through my nostrils, I just couldn’t face seeing the family with him looking like that. His hair was greasy and full of flaky skin where he scraps the nit-comb against his scalp, he thinks it makes his hair look clean but I find the picture utterly amusing as he reaches the comb right behind his head combing hair forward from under his crown, creating a flat top, but ignores the rest so that the flat swoop of hair is supported with tufts of hair from the sides that haven’t been combed. He reminds me of an owl. His face was covered with soft, dark fluff in patches, punctuated with the odd inch long, wiry, black hair. His armpits were as usual unwashed and his clothes had been worn continuously for three days (and nights) showing food stains and splotches of dirt. He is completely capable of looking after himself but shows the most frustrating form of rebellion by refusing to care for himself. If asked to shower he will go into the bathroom, locking the door- turn the shower on and splash water on the floor, dampen the towels along with his hair and empty the shampoo bottle into the shower. Mum finds a perpetually smelly and dirty son standing in a completely staged shower scene, his efforts to avoid any demand made on him far outweigh in effort the demands themselves. But I just couldn’t face the embarrassment this year, my grandpa died in September and my grandmother was organising this years meal by herself, I had made an extra effort with my appearance and had the intention of making an extra effort with my grandmother. It had to start with Ben!

I knocked on his door and told him to go into the bathroom, he agreed asking what we were doing, I said that we were going to wash his hair as I have done on previous occasions. He complied and as I detached the shower head, being extra careful to check the temperature of the water as Ben is exceptionally sensitive, he removed his shirt and leant over the side of the bath. I placed a towel under his chin to make him comfortable and set about washing his hair. He enjoys physical contact and although his armpits were smelly, his back large and spotty and his eyes in danger of stinging shampoo, I tried to massage his head in a caring way, telling him every so often to move this way or that so the soap wouldn’t get in his eyes. I find that as long as you tell him what you are going to do, whether it involves touching him, washing shampoo off his face or cooking him a meal, the event usually goes ok. After all the shampoo had been rinsed out I placed another towel around his head and rubbed gently to remove the excess water. As Ben uses so much shampoo and shower gel (none of it on himself) Mum always gets the cheapest shampoo, but I amused myself while rubbing Bens head with looking at James’ new toiletries. I love the handsome, intelligent and gentlemanly young man he is becoming but simply cannot understand why any man needs conditioner. At least he smells good!

Now to tackle the other problems, I knew that if I told Ben we were going to wash his hair, wash his armpits and give him a shave that he’d never have agreed to go into the bathroom with me. So I sat him down on the closed toilet lid with the towel around his shoulders and filled the sink and chatted away about his computer games and college work. Ben doesn’t like to talk, or at least about general things. He very much enjoys talking about his chosen subjects and (interestingly very comparable to my father) when he finds a topic he likes he can talk for ages. One day in the kitchen I sat exchanging several amused glances with my mother as Ben rushed in and out chatting to me about, I hazard a guess: world of warcraft; lord of the rings; Harry Potter or animals, for a good hour. So he didn’t realise what I was doing as I dampened a cloth in the soapy water and told him to lift his arms, I quickly rubbed the cloth under both his arms finding it difficult to ignore the black tufts of smelly hair that I personally think all men should remove. He started to get a bit annoyed as I quickly slapped some shaving foam around his face although he found time to tell me I should have warmed the foam can in the warm water first, between grumbling about being cleaned. I swiftly moved the razor from his sideburns over his jaw, under his chin and down his neck and he willingly pulled his upper lip tight so I could do his moustache. An ex-boyfriend taught me to shave him and I find it an intimate, nourishing and sensual experience. This of course was completely transformed into a separate and unique experience with my brother, looking after him is rewarding and I don’t see the care I give him as care, it just seems like a natural thing to do, but I do begrudge doing it because I know he could do it himself- he just won’t. He put his deodorant on himself and I told him he needed to wash his bottom and genitals. Leaving him to it I laid out some fresh clothes for him. The meal was relatively successfully and over New Years Mum told me I’d “saved Christmas,” which is a phrase I’ll remember for a long time.


Female, 21 (21 at the time of the event described)

I was seated in a drafty Emergency Room somewhere in Antrim county. My head ached so I was holding it forward to ease the pain. Everything was a bit foggy, but I recognized my friend Lenore sitting patently next to me, sending off a flurry of texts. How did I end up in an A&E, with a sore head? The amnesia was quite frightening, so I put effort into fighting it off by recalling what had happened. I could recall the early afternoon with some effort, while I sat there waiting to be looked at.

I had been on a bus, going to see my best friend Rex in another town. I was 21 then, and it was a little less then a year ago, so my age remains the same, although my poor brain cells have probably aged a bit as a consequence of what follows. I was travelling with Lenore, and we were having a jolly time on the bus, anticipating a great night out of the city. We got to our destination...

I had to ask Lenore what happened then, and as she told me I was able, in some places to grasp threads of memory. I had felt strange as I stood up, and once I was off the bus had fainted. I have never feinted, and it was sudden and must have scared Lenore a bit. She said she had considered trying to catch me, but would have been mashed. She called the ambulance, and hopped in after me and rode with me to the hospital. Apparently I was conscious but I don’t remember any of it to this day, and afterward felt really guilty about the general embarrassment this must have caused and for probably being unresponsive or making no sense in the ambulance, when Lenore was probably trying to say nice things to me.

So there I was, feeling more and more daft each minute as I sat in a wheelchair . Lenore was asking if I wanted a drink (I couldn’t handle the idea of putting anything in my head right then), offering her coat because I was chilly and then she had got hold of Rex , and apparently his folks were coming to pick me up. Now, and this says a lot about how my (partially functional) head works; I felt very daft, very defenceless, and a bit guilty. I was a bit scared that I couldn’t remember some things as well. But I felt guilty for having a physical malfunction that caused my friends to miss out on a night out, and kept my poor friend looking after weak little me in a dull hospital corridor for several hours. And now my best friends family were going to come and get me...ekkk. That’s not there job, that’s my families job. But My mum lives in England, and my dad lived in America, and my closest Irish kin were second cousins in Kerry. So there wasn’t within 100 miles or so anyone who’s kinship job description included looking after me when I’m physically defunct. Being cared for entails a bit of letting go, and trusting that others don’t mind, and in the case of being unwell, eschewing some control. I’ve lived away from home since I was 15, and don’t like being a burden on anyone else. However, I’ve always enjoyed caring for others, so I was trying to convince myself that they’d be happy to gain goody-two-shoes points by looking after me, but I still don’t much like the idea.

I had a few staples put in, which I didn’t mind, fixing me is the doctors job, he’s getting paid, I’m not putting him out. Rex’s family came to get me, his mum and him driving half way across the county. Lenore l handed me over like a concussed baton, and away I was bustled. I was still all fuzzy, and after trying to answer his mums very chatty and motherly questions I snoozed in the back seat, all wrapped up in blankets they’d brought along, cuddling a hot water bottle they had bought along. I had never been to his house before, and this was really not the sort of introduction I had been imagining.

When we got to the lovely, very homely family house I was feed tea , the ultimate solution to everything, and put to bed in the guest room. I was really touched to find another hot water bottle in the bed waiting for me. I was still very incoherent, with a thumping head and foggy memory. I was stuffed full of pain killers and sent to bed. Rex slept in with me, which would have been much to his parents dismay, had they discovered him there. He cuddled me gently, and woke me up a few times during the night to make sure I hadn’t gone into a coma or anything, which is standard practice for concussions. He pottered of to his own room at 7a.m. to avoid awkward questions. In all actuality there had been very little that would have constituted ‘hanky-panky’ (I love that phrase). He had just stayed there with me, helping me piece the week before back together in my head, and laying with me while I drifted in uneasy sleep.

The next day I was back up and about, and after a wander round the town, went home, and continued life with a sore head. I phoned my mum the next day, to inform her that I now had what felt like a zip in the back of my head. She spent a while trying to convince me to drop all my work and fly to England where she could look after me, but I had essays to write, and money to not be spending on last minute flights. She sounded mildly annoyed not to be able to examine me herself, and suggested a long list of homeopathic remedies, which I ignored completely, but it was a sweet thought. Some month after then, I was in Belfast, with an epic dose of feverish flu, and after complaining to Rex via phone, his Mum must have overheard and I was invited to come down and be ill at there house, which I politely declined. But I suppose I can’t have made to much of a bad impression. In fact, I sometime feel like his mum prefers to have people around who need looking after.

Now, this may sound a bit dull, and introspective, but what I’m trying to highlight, is how my best friend’s family stepped in, far above the call of duty to replace what should have been the duty of my family. I really felt at home, and looked after, like a little child, at their family home. I didn’t feel belittled, vulnerable or even that self conscious. His mother was so motherly, that her motherly care extended comfortably to engulf me, and I somehow stopped feeling guilty for burdening them, as caring for the younger generation seemed to come so naturally to her. I still feel a bit silly about the whole randomly passing out business, and guilty for causing Lenore to have to sit with me for hours on end in Antrim hospital. But I’m also really grateful that I have friends who so willingly step in to act as next of kin, and who show no sign of begrudging it.

Female, 48 (35 at the time of the events described)
Dutiful Granddaughter?

I am driving to my grandparents’ house. I am the nearest person in the family to check on how they’re doing, but it’s hard for me because, since my mother (their daughter) died, my grandmother hasn’t been all that thrilled with me or my brother and sister since she blames us for her death. We know that it’s her grief making her say nasty things, but it doesn’t make it any easier, since we are also sad – she died of cancer. Recently it’s become apparent that they need some help in the house. My grandmother has become very thin, is refusing (or unable) to eat much through the day and my grandfather is showing signs of dementia, or perhaps something worse (Alzheimers is a new thing at this time so not foremost in our minds). I arrive at the house and go in through the conservatory door – past all my grandfather’s walking sticks displayed on the wall. As children we would always pick out our favourite ones to use on Sunday walks, after lunch. They look dusty now and it makes me feel a bit sad, but I smile remembering some of those walks.

They are in the sitting room, surprised to see me – especially George (my grandfather – we always called him George) as he has forgotten my phone call this morning to let him know I was coming. Granny is sitting in her usual tiny chair, she gets smaller every time I see her and more fragile – papery. She has always been deaf (my father used to say selectively so, but now at least it’s real I think), and I have to shout my hello to her. She immediately launches into a tirade of complaints about George. It has always been thus between them, but now there is a more profound malice behind her words. George and I look at each other over her head. He smiles at me in a conspiratorial way; she’s always been his harshest critic, and he seems to need to check that I think it’s nonsense. I reassure him. We go into the kitchen together to get some tea. While I make tea, with all the proper accompaniments (I’ve brought a cake), I realise that there is something in the oven. Opening the door, I discover a very burned, cold shepherd’s pie, a meal George has got out of the freezer, provided by my aunt who visits monthly and was the person who alerted me to their deterioration. He forgets nearly everything nowadays, and can’t tell me when this happened – he thinks it might have been earlier today but it looks to me like it could have been yesterday. We go through the same routine discussing strategies for him to remember he’s got the oven on – but I know he is not aware that his memory has got so bad. He is so pleased to have some other company (other than Granny who never stops shouting at him), that I don’t want to upset or worry him right now. We move on to other subjects as we go back into the sitting room to have tea.

Tea is his favourite meal, and I wonder, perhaps the only thing he has eaten today. He eats a lot; Granny only has half a slice of white bread with butter and a cup of tea. While he talks about the things which occupy him – local events from watching news programmes or reading the paper, I look around taking in the progression of neglected housework. My grandmother’s house, once never less than sparkling clean, is looking a bit shabby, dust is visible on the surfaces of the antique furniture; there are newspapers around George’s chair on the floor – unheard of! The kitchen is the most unkempt. Once it was her domain, everything wiped and washed to extinction but since she hasn’t been near it for weeks and I feel a wave of relief, for her, that she won’t know it has got untidy and a bit grubby as her sight is also seriously failing. After tea, George settles down to watch the news, the sound turned up astonishingly loud so that Granny can hear it. I get busy around the house. Much later I drive home with the music turned up loud in the car to wash away the fear and sadness.

Flash forward, a similar scene about 3 months later. Granny has taken to her bed. She never gets up, but she can still shout down to George, shouting is her forte. Conversations with George go round in circles as he tells me the same things he told me last time I was here. There is a full time, privately sourced carer in the house 24 hours a day now and I am here for her to get a day off. I go up to see Granny. She lies like a living corpse in the bed. I think she is asleep, but as I creep away, she calls to me. Despite my trying to tell her, she is either not interested or can’t understand who I am. She asks me to change her nightdress. OK. This is going to be weird, but I am just going to have to do it. She can’t move and I wonder how, as I pull back the covers a bit, I am going to get her out of her old one, but as I put my hands under her gossamer body, I realise that it won’t be that difficult – I just have to try not to break her. We ease the old nightie up, over her head and carefully extract her arms from the sleeves. It is a thin cotton thing with frilly edges but it seems more robust than Granny’s body which I now realise is naked, right there in front of me on the bed. A feeling of guilt mixed with shame that I never did this for my mother when she was ill, and it strikes me that Granny is now twenty eight years older than my mother was when she died, I will never know my mother’s body at this age. I know for sure that Granny would never, ever have wanted me to see her like this. Perhaps that is why she doesn’t know who I am, because it is easier not to know, to imagine I am the hired help, a nurse whose job this is, and so it’s right and proper. I quickly get the new nightie (exactly the same as the other) over her head and her arms into the sleeves. Then I have to lift her to pull it down – she hardly weighs anything. I can’t believe I am so close to her naked private parts. I don’t want to see her like this, but I don’t want anyone else to either, so in a strange way I’m glad I was here at this moment. As I smooth down the sheets, making sure she’s comfortable, she holds my hand for a moment and smiles, says thank you. I am touched, and feel tears coming. I kiss her cheek and she tells me to go – she prefers to be alone. I take her dirty (not really) nightdress away with me, but before I drop it in the washing basket I can’t resist holding it to my face, it smells of age. Not dirty, not disgusting but old.

Granny died about 3 weeks after that day. George kept going for another nine months, I had to keep telling afresh about Granny being dead – a new, devastating revelation for him every time. He gave up after he fell, breaking his hip, and to go to hospital. He couldn’t understand what all the people (the other patients) were doing in his bedroom, when he realised he wouldn’t be going home, he surrendered.


Female, 23 (21 at the time of the event described)
Being a mother: A lifetime of caring

I became a mother on 22nd November 2007. A perfect little girl. I had a somewhat complicated labour, and had to go straight into surgery as soon as she was born, as I suffered quite serious damage. I didn’t have time to think about how I felt about leaving my newborn daughter, but I remember thinking she’s safe with her daddy, she’ll be fine. I just had to sign a form and get rushed to the operating room. Everything going on around me was unfamiliar and time seemed to be speeding so fast.

When I came around after surgery, I was in quite a lot of pain, although at the time I just accepted it. When I look back I wonder how I was ok… The doctors, midwives and surgeons were telling me I’d had a rough time, but I couldn’t quite piece it all together. Despite the pain, the exhaustion and the blood transfusions I needed, I was so overwhelmed by my beautiful baby girl that it all took a backseat. I cared about her so much, I didn’t know it was possible to have such a strong connection to someone you’ve just met! I’ve always been a caring kind of person, but when you have a tiny person who is dependent on you for everything, you really discover a side to yourself that you didn’t know was there. When I was pregnant, I didn’t feel very connected to my baby, the way some expectant mothers seem to be. But as soon as she was in the world, everything sort of shifted.

I would define care as meeting the physical and emotional needs of an individual, and in my role as a mother, that is what I strive to do every day for my little girl. Nurturing a child until they grow up and become independent is such a special caring role, but often gets overlooked; people tend to focus on people caring for elderly or sick people when they think of ‘carers’. The way I see it, mothers spend a lifetime caring about their children, and concerning themselves with all aspects of their lives. I’m 23, and I know my mum still cares so much for me, and when I’m feeling vulnerable or unwell, the only person I want to talk to is her.

Becoming a mother has heightened my caring skills, and has made me more determined to succeed in my goal of becoming a counselor for young people. Since having my daughter, I am much more aware of charities and campaigns concerning the protection of children, and because I care so much about my little girl, I get very angry when I hear about people neglecting or harming their children; it makes me feel physically sick, and I look at my daughter and think, how could anyone hurt you? When I get so upset, sometimes I think I care too much, but it kind of goes with the territory. You can’t just switch off your caring button.

That’s the scary part about being a mum; the fact that you care so much about your child that the thought of anything bad happening to them terrifies you, it’s too scary to think about. I don’t let myself think about things like that, because no matter how much I care, I can’t physically be around her all the time, and protect her from everything. Caring for a newborn baby is such a strange and wonderful experience. One minute they bug you because they’re fussing or crying, but a moment later, you are overcome with love and the urge to protect them and care for them. I always want to be there for my little girl, and I know I’ll never stop caring as long as I’m around.


“The moment a child is born, the mother is also born.  She never existed before.  The woman existed, but the mother, never.  A mother is something absolutely new” (Indian writer, Rajneesh)
Female, 22 (14 at the time of the event described)
I have never really had a first hand experience of caring for an individual in my family. My closest experience came when my best friend fell ill. We were 14 years old at the time, and our heads were filled with boys, boys and boys! Colette had always been an athletic person and had won several top competitions in running, even being British Champion at cross country at under 16 level. Immensely fit she could out do any of us at any sport in PE at school, so it was strange for us all especially Colette when she found herself out of breath when we were playing sport and unable to keep up with girls she knew she had a higher fitness level than. Colette repeatedly went to the doctor for testing but nothing could be found and doctors dismissed her complaints. It was only when she reached the point of falling without explanation unable to lift herself up that Doctors really began to take notice. She was admitted to the Royal and was eventually diagnosed with Chronic Inflammatory Dimiliating Neuropathy. Colette underwent treatment for many months both in and out of hospital and it was a very difficult time not only for her but also the strain on her family. While us her friends were out on cinema dates, experiencing our first alcoholic drink or cigarette she was tied to her bed unable to move. I tried to visit her as often as I could but being so young it was difficult to understand what she was going through and also to put her own needs above my own social life (something I have always deeply regretted). My care for Colette would involve baking to cheer her up, bringing round magazines and sweets to the hospital and filling her in on all the goings on in school. As she began gradually improve, we would bring her to the local shopping centre, wheeling her in a wheelchair so that she could eventually feel apart of the group again. I know Colette battled for a long time with the feeling of loneliness and lack of inclusion as she had missed out in what we thought were important things in our teenage lives. My care towards Colette now 8 years later is a lot different and although she is back running again and now holds a very successful job in London, I keep a watchful eye that she isn’t slipping either physically or emotionally.
Female, 21 (16 at the time of the event described)

Almost five years ago, my father was diagnosed with non-Hodgkin’s lymphoma. The day before my father broke the news to me and my two sisters and brothers, I had been watching an episode of neighbours, in which one of the characters told his wife he was dying from lymphoma cancer. It seems silly now, but when my father told me what type of cancer he had, I immediately assumed he was going to die. I had little knowledge of cancer. It had never before affected my family, so each of us, where completely devastated.

My father was put on a course of chemotherapy and needed a lot of care. Chemo can hit a person very hard, the first time round. My father and mother are separated. He and his partner decided it would be best if she moved in to help look after him. At first, I felt reassured that someone would be with him all the time, but after few weeks, I began to feel jealous. This may sound strange, but I began to resent my fathers girlfriend. I felt she was taking over everything. I wanted to help look after my father.

My father was in remission for 1 year but the cancer returned a year after that. This time my father was put on a course of chemotherapy and radio therapy. He refused to accept the treatment. He became frustrated saying he would rather die than go through the hell of treatment again. In hospital he refused to see us. Again I was devastated. How could he be so selfish and reject the care that was being offered to him? Looking back I realise I could never understand what he was feeling at that time.

In the end it took a doctor who had dealt with my father before, but since then had retired, to talk him into the treatment. The treatment was successful and my father again is in remission. I feel that doctor provided a type of care none of my fathers family could. My family owe him so much.

Female, 20 (4 at the time of the event described)

My story of care is my first memory of being “cared for”. I was 4 at the time (I am 20 at the time of writing) and had just caught chickenpox from a boy at school. It was a week before my 5th birthday and it was causing me great distress that I would be red and spotty at my birthday party (the red spots wouldn’t match my carefully picked out party dress!). Also, due to my contagious nature, my best friend was not allowed to come. I remember sitting on the sofa in our living room whilst my mum applied the thick pink camomile lotion to my skin and batting my hand away every time I tried to itch. Behind her back my two older sisters were jumping around like monkeys itching and scratching encouraging me to do the same, my mum turns around and tells them off for making me itch more and run off together saying they wouldn’t play with me because I have the “lurgy”.

The day of my party mum wakes me up. I am still itchy and sore and covered in bright red spots. She tells me my sisters have got a surprise for me and leads me out of my bedroom. Our whole house has been decorated in big yellow spots and yellow balloons so it looks like the skin of the Mr Blobby, my favourite t.v. character at the time. My oldest sister waddles out of the bedroom wrapped up in a costume of pink toilet paper and yellow felt tip spots which, according to my mum, they had been up all night making. I get downstairs and there is a huge Mr Blobby cake mad for me sitting in the middle of our kitchen table and my sisters pile on me in a big bear hug me saying “if you’re going to be spotty on your birthday, so will everything else”



Female 37, (24 at the time of the event described)

When I was 19, after having been a sick teenager, I had my first massage and it changed my life. I then decided I wanted to become a massage therapist. I finished my degree after 3 years of study in Eugene Oregon. When I was 24 I opened a practice with a friend. We both also worked in a sort of new age shop where we did chair massage and gained many clients this way. As well I went with the owner of the shop and a few other therapists to a healings arts convention in Seattle. There a woman in her 40’s came for a chair massage and was really impressed with me. We got to talking and found that she was also from Eugene. A couple of weeks later she called me for a massage. I saw her in my office and all went well, she was really relaxed and happy. She said she must bring her son. A few days later she brought him into the shop and I started to give him a chair massage. He kept saying ‘ouch’ and wincing. I eased the pressure and was to the point where I was touching him so lightly it was ridiculous. It suddenly clicked and I looked at his arms; there were needle marks and bruises. I bent down, looked at him and asked softly; “What have you been doing?” He replied; “Heroine”. I asked if he was still using, he replied he had been off of it for a week. I asked him if everything hurt and he said yes. I told him that massage wasn’t the right treatment for him, gave him the number of someone else, a friend, and explained what they did. I urged him to call the number I gave. I talked to his mother and repeated what I had said to him. She was looking after him at home and he made daily visits to a clinic, which I thought was strange. He needed to be in a full rehabilitation centre. My partner and I were separating at the time. He happened to be there in the shop as well. He recognized the guy from school, and said; “I never got along with him; he was a bully, strange what has happened to him, he used to be very big; a jock”.

A month had passed, I asked my friend whose number I had given if the guy or his mother had called; “No” he said. Maybe he was alright, I thought. Two days later I was working again in the shop; there was a call for me, (this is before cell phones were popular!) It was the mother. At first she sounded normal, said she wanted to book in for a full massage in the office, she had lost the practice number, then she broke down crying; “I need to do something for myself…”. I asked what was wrong, what had happened? Her son had overdosed in his bedroom. The door had been locked and a friend climbed into the window and found him dead. That had been two days before.

I had planned on meeting my partner to discuss things that evening and told him to come later. I set her a late evening appointment, after everyone else had gone. When I started the massage she was drained, placid and calm. I began my usual way. I tried to maintain my focus, not ask questions and be very serene. She cried a bit but I just continued; back, feet, head, shoulders, and had her turn over. I went to massage her head and she burst out crying. Instinctively I put my hand on her heart and just held it there for ages. She put her hand on mine and cried, unashamed, for quite awhile. She then regained herself, blew her nose and wiped her tears. Then she quietly said; “Thank you”. I was surprised by my reaction, but it seemed natural, I also felt myself strengthen, from inside and stay put. I had to be calm and grounded for her, not get carried away with her emotions and not let her feel ashamed for breaking down. I made her feel safe. It was almost as if a bigger me stepped in and took over.

The appointment lasted longer than usual; my partner was sitting in the waiting room. She and I came out and he said he was really sorry about her son, he had known him in school. She started crying again and we both hugged her for a long time. Once she was ok she asked to phone a taxi. I told her I would drive her home and said to him I would meet him at his house after. I drove her to her home and along the way she started asking about my partner. How long had we been together, how had we met? I told her, trying to avoid the stickier subject. I pulled up into her drive and asked if she was home alone; no the house was full of family. We sat for a moment and she asked if I thought my partner and I would have children? I said no, I don’t think so, we were splitting up. “Oh no!” she said, “You two seem good together, you should try and work it out, are you ok?” She seemed so concerned; genuinely upset by what I had told her. I was astounded, that she had just lost her son and at the same time was trying to care for me. She was a mother; perhaps this was her way of feeling normal, caring for someone else.

Usually there are certain boundaries you don’t cross as a therapist, but sometimes not crossing them is inappropriate. I don’t remember her name or her sons but I remember there faces, and the intensity of emotion; it was an experience I will never forget.
Male, 22 (various ages at the events described)
With the absence of my father, my mother, myself and my sister were on our own. Working multiple jobs at long hours meant my mother struggled to cope with raising two small children as well as her increased work load. My Mother being a fiercely proud and independent woman would not be the type to ask for help. Seeing that she was struggling my grandmother and other members of my extended family entered the fold to share some of the burden.

My grandmother like my mother and the other women of my family was a fiercely independent and proud woman who juggled jobs cleaning houses and ironing clothes for many years to find the time to feed me and clothe me, deliver me to and from school. This was always done with a smile and a pound and a knowing wink, as she knew it would be used for sweets or some other toy or crap.

I was extremely close to my grandmother, more so than my elder sister, perhaps as I was the only boy (as is the tradition in Ireland, were the women coddle the boys) and perhaps because I was younger and relied more so on my grandmother’s love and care. . ( My sister has always resented the close relationship between me and my grandmother) Even up to my teenage years when it is usual for the young to distance themselves from their relationships with care providers in order to mark out their burgeoning adulthood I would have done anything for my grandmother, any work or manual tasks that needed doing, I was the person to go to, asking for nothing except her continued care and love.

Around three years ago my grandmother took a bad fall in her house, breaking both her wrists and as a result of this had to stay in a respite home for a period of three months. After the initial blow to her confidence and health, my grandmother became determined to regain her independence and return to her own home. During this period I visited constantly and maintained her home while she was away, and after three months she was allowed to return home. Shortly after this the same thing happened and my grandmother broke both her wrists. My grandmother approached this visit to the respite home with the same vigour as before, but it soon became clear that her bones this time weren’t as quick to heal. The idea of moving my grandmother closer to her children was discussed more and more in the conversations between my mother and her brothers and sisters. As it became more clear to my grandmother that this wasn’t just a passing notion, she began to withdraw. No longer concerned with getting better my grandmother’s body wasted until she was in a worse position than before she entered the home. When the forms were signed and the move was complete, my grandmother now totally robbed of her independence, just gave up!



I still visit, regularly in fact but not as much as I did before. I find it painful to watch a woman that would be happier to die than living another day confined to her bungalow. And occasionally there are flashes of her former self, but this is more painful still.


:)


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