I returned from India in mid February pleased and excited about the place for my mother at the Dignity Foundation’s Dignity Lifestyle Township in Neral, India. There was a place for her there but I didn’t feel able to reserve it for her. After all, she hadn’t quite reached that point, had she, and there were all sorts of formalities to prepare. It’s not the kind of thing one imposes on someone, is it, to admit that they can’t look after themselves and need full time care? And anyway she was shopping for herself, going out, making her own meals.
The thing was, she wasn’t.
I stayed away from my mum’s as I had the inevitable aeroplane cold on the Monday after I came back and besides I had to spend the whole day at Great Ormond Street Hospital with Miss DD. When I went to see her the following morning, it was clear that my mum hadn’t eaten for a while, perhaps a week? OH had checked on her a few days before and reported that she seemed perky and fine in herself but the house managers of her warden-assisted block had reported her shouting in the corridors and saying “Something has happened!” But what? I’m wondering now if my mum had a mini-stroke that precipitated a rapid worsening of her dementia.
She’d lost so much weight and appeared much more confused even than usual. It was imperative to get her to eat something but, try as I might, she kept refusing, assuring me that she was cooking and eating rice for herself and angrily rebutting all my attempts to feed her at least something.
It was at that point that I decided that I had to try and get her to India as soon as possible. She was in such a bad way, dressed in a dirty nightie, dehydrated, literally dried up, regularly coughing up the contents of her lungs and spitting them out wherever was convenient. I suspected bronchitis or a chest infection. She seemed so ill and hopeless that I thought just keeping her alive for the two weeks it would probably take to sort out the medical screening for the Dignity Resort was going to be a tall order. I set to work.
We have a private hospital about 2 minutes’ walk from our house and I arranged appointments for screening tests to be carried out. But they needed several referral letters from my mother’s GP, the very GP practice that had, last April, refused to listen to me and decided they could do nothing for my mother until there was a crisis. The GP practice that had ignored a request for a referral to Social Services for months.
At first the GP refused to produce the test request letters in case the tests showed up something that they would have to treat, but when I pressed him he finally consented. The couple of hours spent getting my mum to do an MRI scan; an x ray; a CT scan and blood and urine tests were fun. At one point she stood up from her wheelchair in her filthy slippers, her filthy petticoat trailing under her encrusted nightie and told me that she’d had enough and was going home. I’d had enough too. “Go on then.” But of course she was dependent on me for everything, while steadfastly refusing to acknowledge that in any way.
But nor would the doctors, it seemed. Honestly, they seemed to be trying to do as little as they could to help her. I mentioned to one of her GPs that she had taken a turn for the worse and he didn’t bat an eyelid. I felt that they were happy to leave her there to die. I honestly thought, as I climbed the flight of stairs to her flat once or twice every day with soup, bread, cake, biscuits anything she might fancy to at to raise her calorie intake, that I would walk in and find her dead on her sofa in front of the television. At one point my Nancy bag contained two leaky bottles, that OH had purchased from Boots – neither GP practice nor hospital could provide them – full of urine samples that I had urged my mother to give and I was delivering personally to the GP. I’m not kidding, I was there at least twice a day for a week.
Eventually, though, I had secured all the tests I needed apart from a consultation with a psychiatrist and an ECG. My friend @Morethanmum, a GP herself, very kindly helped me with the forms for these and, in the place of my mother’s obstructive GP, helped suggest the correct person to see, a psychogeriatrician of 25 years’ standing. A week had gone. Tickets to India were booked for the following Sunday and by this time I had secured my mother’s Indian visa, although I had to fight with the doorkeeper at the private company that handles visas on behalf of the indian government when I had neglected to take my mother’s old passport with her visa from 2011 to hand in her new visa application. If it had specified this on the webite, of course I would have taken it but luckily the supervisor at the Indian High Commission agreed to let me scan the old passport and email it to her.
I spent the following week wrangling with the community social worker, who had coincidentally booked an appointment for the previous Friday, during which time she had obviously made up her mind that I could and should be looking after my mother more and that this meant that my mother would probably not qualify for any more help. “No,” she said, “Going into residential care usually makes them worse and they go downhill.” The alternative, according to her, was that I sort out some sort of carer to come and help my mother, and meals on wheels. She simply would not accept that there was no keeping my mother in her flat if she was determined to go out, and that she would never eat the meals on wheels because she had no idea how to use her microwave to heat them up, even assuming that she would agree to eat non-Indian food cooked by someone else in the first place. Or even that she often refused to let anyone, including her cleaner, into her flat. No, the social worker knew best, and I spent hours wrangling with her on the telephone. I didn’t understand her attitude to me until, discussing it all with one or two Twitter friends, it became clear that the (South Asian) social worker’s cultural expectations of me were probably that I should be looking after my mother myself in my own home and that I was therefore somehow culturally unsuitable and letting the side down because I was honest that that was not a realistic proposition for someone who will not, cannot, accept anyone else’s needs.
Then, on the Thursday, while I was at my volunteering job, I picked up a few emails and voicemails. Apparently, the social worker had decided that my mother could no longer care for herself and wanted to admit her to hospital. Paramedics had come, followed by another of my mum’s GPs and they, together with the social worker and the Community Psychiatric Nurse, had all stood around arguing while my mother, who had pointblank refused to leave her flat, sat in the middle of them, daytime television blaring out at full volume. Picture the scene for a moment. I finished my shift and drove straight to the GP practice, whose managers had no inkling of this situation.
The Friday saw an appointment with the psychogeriatrician, who came and saw my mum and actively listened to both of us, probably the first person in the whole story to do so. She was lovely and she seemed to agree that culturally-appropriate care was going to be the best path for my mum. I saw her out and walked the dog because, you know, I still have a family and a life, and then received a phone call from the (Asian) GP who had attended my mother the previous day wherein she harangued and berated me for not visiting my mother and not ensuring that there was food in the flat.
“I’ve been visiting her every day for a week and there is soup in the fridge. Did you look in the fridge?”
“No we didn’t find the fridge. The flat is all upside down. Anyway we tried to call you and you refused to pick up the phone. You could not be contacted.”
Goodness, this GP was so rude. Damn me for having a life outside my mother. And she simply refused to listen.
Shortly after this argument, a community social worker called who was kind, and gentle and conciliatory and totally unlike her belligerent colleague. Pamela explained that it had been decided to admit my mother to hospital but could I go back to her flat and let the paramedics in? I did this and my mum was admitted through A&E, with me apologising to the Filipina A&E nurse for my mother’s racial abuse. “You are a very bad Chinese.”
The following days saw my mother medically stabilised very quickly of course, but no-one knew what to do with her. She could not be released back to her home if she could not look after herself. Nonetheless, they had to free up the bed in a Surgical Ward that was full of confused old ladies. On the first day, my mother’s hearing aid, her only means of communication with the outside world, was lost in the hospital, with the medical staff shrugging and saying, “Oh things do get lost. They put them down all over the place.” I was so upset: it had taken 6 weeks to obtain my mother’s new hearing aid and here it was lost. We arranged for Specsavers to visit the hospital to take a new mould of my mother’s ear, knowing that she would face the medical assessment in India the following week with no means of understanding what was going on. Miraculously, though, the hearing aid had been found by the next day but I’d like to commend Specsavers in Bromley, contracted by my mother’s GP for audio services, for being so helpful and willing to go so far to help us.
Two fresh issues raised their head in the early part of that week. My mother was booked to have an ECG test at our local private hospital but, because she had been admitted to hospital, she would miss her appointment. However, she had had an ECG taken on admission to A&E on the previous Friday and, according to all of the medical staff there, it would be no problem to have a copy of this to take with me to India. Only no-one seemed willing to release this to me. Unfortunately, my Power Of Attorney over my mother’s affairs is an old one that has been superseded by the Lasting Power of Attorney, that specifically covers decisions relating to health matters. Of course, there was no guidance on the Government website about upgrading the Power of Attorney document and I had been advised by the Consultant Psychogeriatrician that I was making these decisions on behalf of my mother under the Mental Capacity Act 2005. Sadly, the Hospital Social Worker, by whom I was harangued for an hour on at least two separate visits to my mother in hospital, did not seem to accept the expertise of the psychogeriatric consultant in the matter. Nor would she accept my pleadings that my mother was unsafe to go home to her flat because my friends had witnessed her crossing the busy road outside her block without looking.
“That’s just hearsay,” she said, “You didn’t witness it yourself.”
Err no, because if I had been there myself, I would not have let her cross, would I?
“Oh, Dr. C, is wrong to say that. I’m pretty sure you taking your mother to India is not covered by the Mental Capacity Act. Dr. C is just about to retire so she’s got her facts wrong.”
Way to impugn a senior colleague and professional. I wonder why, after 20 years, you’re still a junior?
It appeared that the nurses wanted my mother off the ward.“Your mother is going to end up killing someone by blocking the bed,” said one, particularly empathetic nurse. However, they would not let me take my mother off their hands to India because they suspected that I had no power to do so, and therefore were going to withhold the ECG printout, the last test that I needed. The hospital social worker was trying to arrange care for my mother, or was she? Apparently she didn’t want to stress me out, which is obviously why she was hunting me down to harangue me. And the community social worker was simultaneously telephoning me to tell me to have the gas in my mother’s flat disconnected because it was not safe for her to continue to live there. So which was it to be?
In the end, a call to the Patient Advice and Liaison Service (PALS) secured the knowledge that I could, in fact have the ECG printout. The nurse and the hospital social worker tried to take a copy of my Power of Attorney, which I had already shown them, but by this time I was becoming distrustful of them all. Going every day to see my mother and trying for half an hour each time to find an extortionately expensive parking space and then being harangued by both my mother and the hospital staff was not one of the most gloriously happy times of my life, I can tell you. It’s not the sort of experience that puts one in a cooperative frame of mind.
By the Thursday, I had had enough and left my mother who had been repeating one sentence in a loop after a visit of 20 minutes. I yomped down the long hospital corridor towards the exit and finally became aware that I was being pursued. It was a junior doctor from the ward, Dr. Tomas Vasquez who had taken time out of his undoubtedly busy and long shift to sit me down in a conference room away from the ward whose traumas I had just left and actually listen to me. Yes, doctors, LISTEN. He’s the only one of you in this whole sorry saga who did. And he was key because his report to his senior level staff, including the psychogeriatric consultant’s findings, was an important counterbalance to that wretched junior social worker who was recommending to her superiors, sitting there in judgement over me in a situation whose facts they did not know, that they should not let me take my mother to India. If you’re out there, Dr. Vasquez, please stay one of the good guys and don’t let yourself be corrupted by the God complex that affects a lot, a lot, of doctors.
And then, on the Friday, my mum started saying that she didn’t want to go to India.
I was doing a fill-in volunteering shift on the Saturday, when OH went to the hospital and spent 4 hours trying to convince my mum that the place in India was the best place for her. Unable to listen or reason, my mother was insisting that she would go home to her flat and she could not accept that no-one was going to let her go back there to be on her own. OH remembers thinking that she was arguing away her one chance of happiness. I joined him at the hospital after my shift and reluctantly agreed that we could not take my mother out of hospital that night.
We passed a sad and sleepless evening and night, debating tearfully what on earth we should do next. If we removed my mother from the hospital bed and she refused to get in the car to the airport the next morning, or onto the plane, or if she kicked up a fuss on the plane or when we changed planes in Dubai, I would be be stuck looking after her and be a virtual prisoner in my home, supervising her until her death. My OH, in a rare emotional outburst said he loved me too much to let me do that. Aw. The authorities, having got their bed back and dispensed with her, would be happy not to have to care for her. I wrote my mother a last plea for reason, pointing out the cost of care in the UK compared with that in India and the fact that they would speak Marathi and make her own food, the key deciding factors for me. If there’s one thing that my mother detests doing, it’s spending money.
On the Sunday morning we set off for the hospital in total trepidation, not knowing what the day ahead would bring. It seemed that my final plea to my mother more or less did the trick and she agreed to go to India. While her discharge papers were being prepared and she was being washed and changed, the Matron of the ward, came and met us and talked through our problem. He agreed that the place in India was a good bet and that we did not seem like people who posed a safeguarding risk. To my immense and everlasting relief, he agreed to keep my mother’s bed open for her until the take-off time of the plane, so if she refused to board at the last minute, they would accept her for the night and then the social workers would try on the Monday morning to find a care home place for her in the UK. We could at that point have said that we had done our utmost to secure her future happiness.
My mum sat in the front seat of the car and enjoyed the drive to the airport. The Heathrow assistance staff did a first class job and whisked us through the formalities. Saying goodbye to OH who rushed to see us off after hastily parking the car was like a scene out of a film. “Have faith,” a text from the Boywonder had read, “You’re doing the right thing for Aji.”
It is probably best to draw a discreet veil over the journey to Mumbai during which my mother appeared to regress to the mentality of a demanding and not very nice toddler. I had to sit on top of her while we queued to land in Dubai to stop her taking off her seatbelt and going to the back of the plane to sleep, having forgotten that she was in an aeroplane 39,000 feet up in the air. Her feeble pinching, toothless biting and pummelling were like being set upon by Montgomery Burns. I’ll never forget the kindness of the Emirates Airlines Crew when they came and whispered to me reassuringly that I should take no notice of what anyone might say or think but that I was doing an important job and they were her to help me. I can’t fault Emirates, actually. The staff were all incredibly kind and helpful and I’m sure I would not have been able to make this journey with my mum without their constant help and consideration.
When we eventually landed in Mumbai, my mother was seized with an immediate hunger and was begging everyone around her in the immigration queue for food. I had a small spattette with the Immigration Official, who in his highly-accented English quibbled with my pronunciation of our destination. I’m afraid they can be like that in India. Having eventually cleared Immigration, we found ourselves in the new terminals’s duty free shop and I bought my mum some chocolate. But the shop would not accept Indian Rupees and had no change for a £20 note. Since I had neither Euros nor US Dollars, I had a little spat about having to pay by Debit card. After all of this my mum decided that she did not want the chocolate: she wanted something savoury. We went downstairs to find something, me not rising over a nasty pompous man who decided to pick a fight with me in the vein of “Who has flown further today?” He had flown from Chile, apparently. Like I cared. Knob.
So I changed some money and bought her a sandwich in the only open snack bar. Any good? No. It needed salt. Of course it did. And I was unable to pluck salt from the air because I am a bad person and a bad daughter.
Anyway, we found our lovely pre-arranged driver, Mr. Yuvraj Sharma who was most bemused at my mother’s condition and demands for salt. Don’t forget that in all this time I had no idea whether my mother would be granted a place at the Dignity Resort, conditional on the agreement of the doctor on site and of the President of the Dignity Foundation, Dr. Shailu Sreenivasan. If they did not admit my mother, we’d have to return to the UK and be back to square one, a prospect I simply could not face.
This is getting dull now but eventually we reached the Dignity resort and the heroine of the hour, the lovely and dear Dr. Asha Manocha decided to waive some technicalities and admit my mother on the spot. She said she had done this in recognition of exactly what it had taken to get my mother this far. I can’t tell you how grateful I am to her and how I continue to be astounded by her good grace and, well, dignity.
So there we are. My mother fell and broke her osteoporous hip a week after I left her to return home. I felt terrible that I’d left her there so far away but she could equally as well have fallen here, in her busy road alone and with no-one to care for her. Over there, she is surrounded by Marathi speakers and round the clock attenders to look after her. It was a tough decision but, on balance, I think, the right one.
And here endeth the tedious tale. No-one’s interested in my blog anyway, according to the Boywonder so I probably haven’t bored too many of you rigid.
The people in bold are those whom I owe a debt of gratitude for their invaluable help and support. x