I am back home, or at least, back in my home city. My actual home, the place where I spent most of my time before my accident, is still someway off. I hope to return there someday. In the meantime, I will continue writing this blog, in the hope that it is useful to somebody. I kindly ask that if you have the means, it would mean a great deal if you could support my writing by becoming a paid subscriber, and keep this show on the road.
Hanif, welcome from a somewhat overcast Ireland. I’m so downhearted to hear things aren’t going well. So rather than inspirational tea towel advice let’s get practical. If you and your family have already done some or all this then I’m glad. However, if it were me I’d do the following. Firstly speak to the senior medic in charge and ask them what the plan is for you. Rotting in a sideward doesn’t seem to be a management plan. What is the prognosis and how will further rehabilitation both be accessed and indeed help. Get them to review your medication and see what may be causing the nausea and what might alleviate it. The UK is supposed to have world class spinal injury rehabilitation and treatment but this doesn’t sound much like it. If you’ve already done most of this then apologies for stating the bleedin’ obvious but it’s just out of a sense of upset about your condition.
Finally, don’t give up as Kate Bush sang in the Peter Gabriel track. Even though I have never met you, your work has always touched me. Always original and no stereotypes. In the mid eighties I went to see my beautiful launderette for the first time in the then new Cornerhouse Cinema in Manchester. It completely left me aghast with its comedy, grit and great acting. No Aunties frying Samosas or Asian parents deliberately frustrating their kids dreams. Tiresome tropes which still haunt Brit Asian films to this day You will get better and many are totally invested in encouraging you even if it’s only by commenting on your blog.
Gosh Hanif, that one landed like an arrow in the heart. What powerful words. I don’t believe you have stopped writing, because I am still your reader. Like sunshine after rain, your appetite - and in Jung’s greatest sense, your libido - will return. Slowly. Savour the tiny bits, really feel into them and your brain and soul will grow new pathways. Sending you healing vibes and much love.
There are no words, and yet of course we all want to find them for you. I can suggest, as a meditator and someone who has struggled with depression, that you consider observing the depression as a thing you are studying. Where is it in your body? What shape is it? What exactly does it feel like? Burning? Throbbing? Does it have a taste, etc. You may find that you are not the depression. And there may be ease in that. I am so sorry for this pain
Hanif, i am being treated for cancer, and tired of other people’s home remedies. But can’t resist suggesting you try dope. It helped with my appetite a lot. I hope it is legal in england as it is here in michigan. I think a lot of us want to be there for you, and our only way is through this comments section. Hard to find the right words to express how much we want to be there for you.
Just to say Hanif, I wrote to you some time ago about whether you still had contact with Ken Jones, and it was good to hear from your response that you remembered me (Dave Florence)
It's been quite a thing to be able to follow your amazing journey from our Bromley/Beckenham days. Our lives have led different paths, yours being so high profile, mine far less than average, but in reading the Buddha of Surburbia, I felt so part of the early part of the story that I feel I have somehow been immortalised in an account of an experience in which we shared.
Then seeing your story on TV with Alan Yentob, I nearly fell out of my seat, telling my wife and kids "I know that guy!".
I used to enjoy telling my family that I went to school with David Bowie, but seeing as I never actually spoke to the guy, It was always a bit false, and they always took the mickey out of me ... But here was someone with a successful career that actually knew me!
Now, when you crop up in the media, my wife tells me about "Your friend Hanif". She told me about your money scam; we enjoyed watching Le Weekend and The Mother, made all the more enjoyable when she spots in the credits "Your friend wrote that!". No doubt we've seen other stuff you've been involved in without knowing...
Sadly she also told me about "my friend's" fall in Rome. It's not fair to consider you a friend, we've not seen each other for over 50 years and our lives couldn't have taken more separate paths since then, but I can't help feeling a connection with you as the media continues to keep me updated with your misfortunes.
So I wish you all the best, thank you for your bravery in sharing your story in the public limelight, and I hope this short note may bring back memories of better times, and I hope you get out of that shithole soon and back to something of a more normal life.
Listening to your experience tugs at my heart strings. My husband was in hospital for nine months and he was moved to different wards. He was also on a dementia ward as they had no other beds. His experience sounds much like yours. I constantly requested he be moved as he wasn't suffering from dementia and it was affecting his mental health, sleep. He was frightened to go to sleep as patients often wandered around. It is a constant battle. I had to be his voice and he was moved, it took a lot of badgering to get to moved. Keep on to the ward doctor about getting discharged, and have they liased with social services with a care plan for you. Wishing you well Hanif Please don't lose faith.
No time like the present, sir. No matter what. It's good to take whatever medication you need to be able to live. Antidepressants are life-enabling.
Now here's a sad story for you. My grandson died a year and a half ago of digestive tract failure. He had always had issues with digestion, required a lot of special diets, but a few years before he died it became impossible to eat. He was on intravenous feedings, but his stomach could not tolerate that either. The tube was placed further down in the digestive tract but still it did not work. As he lay dying, in tremendous, unremitting pain, for months and months, with no treatment working, no painkiller worked- he was on the biggest dose of morphine and it made no difference- night and day, he wondered what the meaning of his suffering was. He knew that according to legend, if that is how one wishes to put it, Jesus died for other's sins, but what use is the ordinary suffering of the rest of us? Is it any use at all?
People around him were kind and felt his kindness. He died among family and strangers, far from home. He lived in love, and he died in love, his questions unanswered. He always had a sense of humor. He always knew who he wanted near him and who he didn't. Life continued, right up until he died. We have no new stories to tell you. We are your witnesses. May you find what you seek.
Dearest Hanif - I am so sorry you have hit such a low. We are your community, even though we may not know each other or have met but we all adore your words and for some of us, your writing saved us, just at the right time. My son, now 17yrs old, just started The Buddha of Suburbia this weekend and I am jealous that he gets to read it for the first time! I can hear guffaws coming from his room. He will base his comparative essay about identity on the novel for A Level, as my daughter also did a few years ago. They are both using the transcript of the generous interview you gave me in 1995 which I used as original research for my BA degree. That was such an important time for me and your generosity still resonates throughout my life. I work with young people and support them in becoming artists: singers and musicians. I understand the importance of telling your own story and listening to young people because of meeting you, when I was so young. Even though the 90s are now considered 'vintage' that day still seems like last week to me because it was so thrilling to get to talk to you after feeling such a deep kinship with your work as an Asian woman growing up in South London. Please do not lose hope! We are here and send you healing wishes and thoughts. Just to say, it may make you laugh but I ended up buying a house in Bromley, just around the corner from Bowie's childhood home and have been here for 17yrs! I am curious, where is the house where you grew up in Bromley? Love & respect, Ishani
So sorry, but still hopeful for you. Almost anyone would be depressed, and unable to eat, on a dementia ward. I spent too much time at many of them with my mother, her second husband, and my father, and you must leave there ASAP. Of course this is my little opinion, and I have no facts, but I remain one of your unknown cheerleaders.
There was period of eight days, when I was sleeping rough in London, when I didn't eat at all. I had deliberately removed myself from the places where homeless people tended to congregate, and so was off the radar of the organisations that provide food for the down and out. The other contributing factor was a self-inflicted personal code of ethics, which determines that it is never acceptable to beg or steal. I am reminded of a scathing critique spoken by the amoral force of nature that is Anton Chigurh in 'No Country For Old Men', by the late Cormac Mc Carthy: “If the rule you followed brought you to this, of what use was the rule?” I don't have an answer for that, beyond a presumption that men like me need a set of standards of their own making to guide their actions. It was during this time that I wrestled internally over whether it would be morally acceptable to 'withdraw' a fifty pence piece that I had tossed into one of the small ponds in Postman Park a few weeks earlier. I concluded that it would not.
After two days without food I noticed that I was no longer experiencing hunger pangs. On the evening of my fourth day without food, I was cold and it rained a little. I went inside Liverpool Street Station to warm up and dry out my clothes. I ended-up sitting on a row of seats, in-between a man eating a green curry, that he had purchased from one of the takeaways, and another commuter who was grazing from an assortment of items in a McDonald's bag. Even when surrounded by warm food, I felt no desire to eat.
After I came off the streets I ate normally for a few days and then something happened – a kind of delayed shock. I walked down the road and sat in a Victorian shelter for several hours, looking out across the estuary. I returned home feeling estranged, not from myself, as had been the case when I was sleeping rough, but from my life. I wandered around without any great or small purpose, like Heathcliff at the end of Wuthering Heights. My appetite deserted me and I ate hardly anything. Efforts were made to rekindle my interest in food. Nothing worked. My birthday rolled around. A cake was made for me and then eaten by others. This continued for several months.
The problem resolved itself organically. I began engaging in old interests. I started writing again. As my life began to slowly fill-up with activities that made it worthwhile, my appetite gradually returned. There is something to be said for moving an intractable problem into the corner of your eye, while you distract yourself with something more manageable.
I have never taken anti-depressants. I can't think of a time when I have been depressed and there hasn't been an obvious reason. Conversely, I have known people who suffer from terrible bouts of depression that appear to be unrelated to their circumstances, and who do take medication for their condition. Their lives are made more bearable as a result.
There have certainly been periods in my life when I would have benefited from anti-depressants. On the occasions when they were proposed I always declined. I was worried about how the drugs might impact on my thought processes – in the same way that anti-hayfever medication always makes me feel like my head has been filled with partially-set cement, and makes it impossible for me to focus on anything. I appreciate this is a somewhat hypocritical stance from someone who used to ingest whatever powders and pills entered his orbit, without giving any thought as to their provenance or short and long-term effects.
Maybe there is a fear of surrendering control over my mental processes, the way that I have been forced to when it comes to my physical health. My turncoat/over eager immune is inconveniently destroying a part of my body that I need to live. I am dependent on daily medicine to manage that condition. I am not addicted to these drugs – I don't think they are addictive – but if I stopped taking them, then my symptoms would deteriorate to a point where I would be in great pain and unable to function.
Also, as I get older, I relish the thought of navigating through life unfiltered, without these old safety nets. I am happy to bare my teeth at the world. No more alcohol or drugs that haven't been nodded at by my hospital consultant.
It is common for patients to be shoe-horned into hospital beds on wards that aren't related to their condition. In the hospital where I used to work, they were referred to as outliers. It is far from ideal. The consultants who had been assigned responsibility over their care were based on other wards and sometimes had to reminded that they were obligated to visit their patient.
Dementia Wards are dreadful places. The best will in the world is not enough to address the misery, which can barely be contained. I commend anyone who is capable of working in such an environment on daily basis and not succumbing to despair. I've done odd day's temp work and found it exhausting. They remind me of the scene in the film 'Inception' where the ruined skyscrapers of Limbo City are collapsing like cliffs into an interminable ocean. One dementia patient on their own is an individual tragedy. Many grouped together becomes a localised phenomenon – a black hole grinding the memories and the self-awareness of our species out of meaningful existence. If there is any hope to be found in the managed decline of these fading individuals, then it lies in those who continue to dote upon the physical forms of those who are dear to them, long after the person they loved has been cruelly erased, or is only visible in scrambled glimpses. There is something almost saintly about these people. I think of John Lydon and the care that he invested in his beloved wife, Nora, during the final years of her life, as he lost her to Alzheimer's.
Being an inpatient on a Dementia Ward, when you do not have dementia, is going to have a negative impact on your mental health. As your mental health is going to play an important role in your recovery, this needs to be addressed. Ideally, you would be on a physical rehabilitation ward. There is no harm in politely enquiring if you will be moved to a more suitable location, and thereafter maintaining gentle pressure. That is another sad truth of hospital life, and life in general. The attention gravitates towards the person who is making the most noise.
Dear Hanif, Oh, my! We here are all willing you onwards and upwards! You will get there. Have them check your meds. I was once on a medication that took my appetite away completely. When we checked the teeny fine print, it said one side effect was anorexia. And medication combos can also account for lack of appetite and depression. Please insist they check all this out. And you need to be moved to a much more pleasant situation! This is crazy. We'll all envision a positive move alongside much happier and healthier days. They are coming, don't worry! Thank you for sharing! You have a great, great heart! xoxo
I'm troubled to read your thoughts as you face the night. Hospitals are not conducive to any kind of relaxing night time atmosphere, ironically, I know. In many ways they are there to repair the very sick, rather than take measures for the holistic healing of us on-going broken types.
Please do not bow down at the mythological altar of The Doctor. I am an expert and you can trust me. If you cannot do it yet, ask your loved ones to fight back and ask difficult questions. I remember doing this when I had a heart attack and refused a certain procedure which I knew wouldn't work. To be so ill and see that a battle was necessary was tough. Yet in the end I recovered in defiance too, at an improved pace by taking on the challenge. Health care staff are wondrous, flawed, overworked, human. Always speak up. It's shocking yet unsurprising they snuck you onto anti-depressants.
Have you ever tried CBD oil or gummies? I suspect you smoked cannabis! As have I, in the past. This legal version doesn't make you high but it alleviates anxiety very well. There are even drinks now with CBD. Perhaps you may even get the munchies.
Have you tried Audible at night? An Alexa? She turns my devices and apos on and off as I need them purely with my voice. At present I am listening to The House of Rumour by my darling friend Jake Arnott who lives nearby me.
Alexa can be an absolute pain (and needs good internet - hot spotting works) but there are many hilarious moments when she hears me incorrectly. Sometimes she is spooky but I do talk to her when my insomnia is savage.
Absolutely right Penny! I like the analogy of a 'mythological altar of The Doctor' . I was often told by a sister on a ward that many relatives don't ask questions. When a patient doesn't have the mental or physical strength , it's important relatives take up the quest. Any small piece of control is a bonus.
Perhaps just a small bit of something simple will wake up sleeping taste senses. A piece of perfectly ripe watermelon on a hot day or a lick of a lemon ice lolly, or a bit of peach or mango. It is best to go slowly - there is truth in the “too much of a good thing” adage.
Hardly a day goes by that I don’t think about your situation and wish in some way to help. You have so much strength and the directness of your words, while heartbreaking to read is inspiring. Your family and friends sound wonderful. I am hopeful for you.
I'm frustrated for you reading this update. Put simply, UK hospitals are a terrible place in which to be ill. They have many kind and hard working people working in them but our hospitals and our health system are quite frankly buggered now. Staying in hospital here is not going to do you the slightest bit of good, it will depress you even more. Fight like hell to go home, be a pain in the arse, have your family and loved ones fight for you too. Going home may bring other fears but at least you won't be alone and you can get proper sleep which I doubt you're getting now. Maybe find out how much a private care package might be initially, you have lots of supporters and followers here and presumably a few modestly well off friends who could collectively contribute to a fund to help you?
We are all behind you and willing you onto the next stage of your RECOVERY.
Hanif, welcome from a somewhat overcast Ireland. I’m so downhearted to hear things aren’t going well. So rather than inspirational tea towel advice let’s get practical. If you and your family have already done some or all this then I’m glad. However, if it were me I’d do the following. Firstly speak to the senior medic in charge and ask them what the plan is for you. Rotting in a sideward doesn’t seem to be a management plan. What is the prognosis and how will further rehabilitation both be accessed and indeed help. Get them to review your medication and see what may be causing the nausea and what might alleviate it. The UK is supposed to have world class spinal injury rehabilitation and treatment but this doesn’t sound much like it. If you’ve already done most of this then apologies for stating the bleedin’ obvious but it’s just out of a sense of upset about your condition.
Finally, don’t give up as Kate Bush sang in the Peter Gabriel track. Even though I have never met you, your work has always touched me. Always original and no stereotypes. In the mid eighties I went to see my beautiful launderette for the first time in the then new Cornerhouse Cinema in Manchester. It completely left me aghast with its comedy, grit and great acting. No Aunties frying Samosas or Asian parents deliberately frustrating their kids dreams. Tiresome tropes which still haunt Brit Asian films to this day You will get better and many are totally invested in encouraging you even if it’s only by commenting on your blog.
Good advice!
Listening, just listening to others is kindness. You don’t have to wait. You are kind now.
Gosh Hanif, that one landed like an arrow in the heart. What powerful words. I don’t believe you have stopped writing, because I am still your reader. Like sunshine after rain, your appetite - and in Jung’s greatest sense, your libido - will return. Slowly. Savour the tiny bits, really feel into them and your brain and soul will grow new pathways. Sending you healing vibes and much love.
There are no words, and yet of course we all want to find them for you. I can suggest, as a meditator and someone who has struggled with depression, that you consider observing the depression as a thing you are studying. Where is it in your body? What shape is it? What exactly does it feel like? Burning? Throbbing? Does it have a taste, etc. You may find that you are not the depression. And there may be ease in that. I am so sorry for this pain
Yes, good approach.
Hanif, i am being treated for cancer, and tired of other people’s home remedies. But can’t resist suggesting you try dope. It helped with my appetite a lot. I hope it is legal in england as it is here in michigan. I think a lot of us want to be there for you, and our only way is through this comments section. Hard to find the right words to express how much we want to be there for you.
One word: GUMMIES!
Just to say Hanif, I wrote to you some time ago about whether you still had contact with Ken Jones, and it was good to hear from your response that you remembered me (Dave Florence)
It's been quite a thing to be able to follow your amazing journey from our Bromley/Beckenham days. Our lives have led different paths, yours being so high profile, mine far less than average, but in reading the Buddha of Surburbia, I felt so part of the early part of the story that I feel I have somehow been immortalised in an account of an experience in which we shared.
Then seeing your story on TV with Alan Yentob, I nearly fell out of my seat, telling my wife and kids "I know that guy!".
I used to enjoy telling my family that I went to school with David Bowie, but seeing as I never actually spoke to the guy, It was always a bit false, and they always took the mickey out of me ... But here was someone with a successful career that actually knew me!
Now, when you crop up in the media, my wife tells me about "Your friend Hanif". She told me about your money scam; we enjoyed watching Le Weekend and The Mother, made all the more enjoyable when she spots in the credits "Your friend wrote that!". No doubt we've seen other stuff you've been involved in without knowing...
Sadly she also told me about "my friend's" fall in Rome. It's not fair to consider you a friend, we've not seen each other for over 50 years and our lives couldn't have taken more separate paths since then, but I can't help feeling a connection with you as the media continues to keep me updated with your misfortunes.
So I wish you all the best, thank you for your bravery in sharing your story in the public limelight, and I hope this short note may bring back memories of better times, and I hope you get out of that shithole soon and back to something of a more normal life.
All the best
Dave Florence
Listening to your experience tugs at my heart strings. My husband was in hospital for nine months and he was moved to different wards. He was also on a dementia ward as they had no other beds. His experience sounds much like yours. I constantly requested he be moved as he wasn't suffering from dementia and it was affecting his mental health, sleep. He was frightened to go to sleep as patients often wandered around. It is a constant battle. I had to be his voice and he was moved, it took a lot of badgering to get to moved. Keep on to the ward doctor about getting discharged, and have they liased with social services with a care plan for you. Wishing you well Hanif Please don't lose faith.
No time like the present, sir. No matter what. It's good to take whatever medication you need to be able to live. Antidepressants are life-enabling.
Now here's a sad story for you. My grandson died a year and a half ago of digestive tract failure. He had always had issues with digestion, required a lot of special diets, but a few years before he died it became impossible to eat. He was on intravenous feedings, but his stomach could not tolerate that either. The tube was placed further down in the digestive tract but still it did not work. As he lay dying, in tremendous, unremitting pain, for months and months, with no treatment working, no painkiller worked- he was on the biggest dose of morphine and it made no difference- night and day, he wondered what the meaning of his suffering was. He knew that according to legend, if that is how one wishes to put it, Jesus died for other's sins, but what use is the ordinary suffering of the rest of us? Is it any use at all?
People around him were kind and felt his kindness. He died among family and strangers, far from home. He lived in love, and he died in love, his questions unanswered. He always had a sense of humor. He always knew who he wanted near him and who he didn't. Life continued, right up until he died. We have no new stories to tell you. We are your witnesses. May you find what you seek.
💚
Dearest Hanif - I am so sorry you have hit such a low. We are your community, even though we may not know each other or have met but we all adore your words and for some of us, your writing saved us, just at the right time. My son, now 17yrs old, just started The Buddha of Suburbia this weekend and I am jealous that he gets to read it for the first time! I can hear guffaws coming from his room. He will base his comparative essay about identity on the novel for A Level, as my daughter also did a few years ago. They are both using the transcript of the generous interview you gave me in 1995 which I used as original research for my BA degree. That was such an important time for me and your generosity still resonates throughout my life. I work with young people and support them in becoming artists: singers and musicians. I understand the importance of telling your own story and listening to young people because of meeting you, when I was so young. Even though the 90s are now considered 'vintage' that day still seems like last week to me because it was so thrilling to get to talk to you after feeling such a deep kinship with your work as an Asian woman growing up in South London. Please do not lose hope! We are here and send you healing wishes and thoughts. Just to say, it may make you laugh but I ended up buying a house in Bromley, just around the corner from Bowie's childhood home and have been here for 17yrs! I am curious, where is the house where you grew up in Bromley? Love & respect, Ishani
So sorry, but still hopeful for you. Almost anyone would be depressed, and unable to eat, on a dementia ward. I spent too much time at many of them with my mother, her second husband, and my father, and you must leave there ASAP. Of course this is my little opinion, and I have no facts, but I remain one of your unknown cheerleaders.
There was period of eight days, when I was sleeping rough in London, when I didn't eat at all. I had deliberately removed myself from the places where homeless people tended to congregate, and so was off the radar of the organisations that provide food for the down and out. The other contributing factor was a self-inflicted personal code of ethics, which determines that it is never acceptable to beg or steal. I am reminded of a scathing critique spoken by the amoral force of nature that is Anton Chigurh in 'No Country For Old Men', by the late Cormac Mc Carthy: “If the rule you followed brought you to this, of what use was the rule?” I don't have an answer for that, beyond a presumption that men like me need a set of standards of their own making to guide their actions. It was during this time that I wrestled internally over whether it would be morally acceptable to 'withdraw' a fifty pence piece that I had tossed into one of the small ponds in Postman Park a few weeks earlier. I concluded that it would not.
After two days without food I noticed that I was no longer experiencing hunger pangs. On the evening of my fourth day without food, I was cold and it rained a little. I went inside Liverpool Street Station to warm up and dry out my clothes. I ended-up sitting on a row of seats, in-between a man eating a green curry, that he had purchased from one of the takeaways, and another commuter who was grazing from an assortment of items in a McDonald's bag. Even when surrounded by warm food, I felt no desire to eat.
After I came off the streets I ate normally for a few days and then something happened – a kind of delayed shock. I walked down the road and sat in a Victorian shelter for several hours, looking out across the estuary. I returned home feeling estranged, not from myself, as had been the case when I was sleeping rough, but from my life. I wandered around without any great or small purpose, like Heathcliff at the end of Wuthering Heights. My appetite deserted me and I ate hardly anything. Efforts were made to rekindle my interest in food. Nothing worked. My birthday rolled around. A cake was made for me and then eaten by others. This continued for several months.
The problem resolved itself organically. I began engaging in old interests. I started writing again. As my life began to slowly fill-up with activities that made it worthwhile, my appetite gradually returned. There is something to be said for moving an intractable problem into the corner of your eye, while you distract yourself with something more manageable.
I have never taken anti-depressants. I can't think of a time when I have been depressed and there hasn't been an obvious reason. Conversely, I have known people who suffer from terrible bouts of depression that appear to be unrelated to their circumstances, and who do take medication for their condition. Their lives are made more bearable as a result.
There have certainly been periods in my life when I would have benefited from anti-depressants. On the occasions when they were proposed I always declined. I was worried about how the drugs might impact on my thought processes – in the same way that anti-hayfever medication always makes me feel like my head has been filled with partially-set cement, and makes it impossible for me to focus on anything. I appreciate this is a somewhat hypocritical stance from someone who used to ingest whatever powders and pills entered his orbit, without giving any thought as to their provenance or short and long-term effects.
Maybe there is a fear of surrendering control over my mental processes, the way that I have been forced to when it comes to my physical health. My turncoat/over eager immune is inconveniently destroying a part of my body that I need to live. I am dependent on daily medicine to manage that condition. I am not addicted to these drugs – I don't think they are addictive – but if I stopped taking them, then my symptoms would deteriorate to a point where I would be in great pain and unable to function.
Also, as I get older, I relish the thought of navigating through life unfiltered, without these old safety nets. I am happy to bare my teeth at the world. No more alcohol or drugs that haven't been nodded at by my hospital consultant.
It is common for patients to be shoe-horned into hospital beds on wards that aren't related to their condition. In the hospital where I used to work, they were referred to as outliers. It is far from ideal. The consultants who had been assigned responsibility over their care were based on other wards and sometimes had to reminded that they were obligated to visit their patient.
Dementia Wards are dreadful places. The best will in the world is not enough to address the misery, which can barely be contained. I commend anyone who is capable of working in such an environment on daily basis and not succumbing to despair. I've done odd day's temp work and found it exhausting. They remind me of the scene in the film 'Inception' where the ruined skyscrapers of Limbo City are collapsing like cliffs into an interminable ocean. One dementia patient on their own is an individual tragedy. Many grouped together becomes a localised phenomenon – a black hole grinding the memories and the self-awareness of our species out of meaningful existence. If there is any hope to be found in the managed decline of these fading individuals, then it lies in those who continue to dote upon the physical forms of those who are dear to them, long after the person they loved has been cruelly erased, or is only visible in scrambled glimpses. There is something almost saintly about these people. I think of John Lydon and the care that he invested in his beloved wife, Nora, during the final years of her life, as he lost her to Alzheimer's.
Being an inpatient on a Dementia Ward, when you do not have dementia, is going to have a negative impact on your mental health. As your mental health is going to play an important role in your recovery, this needs to be addressed. Ideally, you would be on a physical rehabilitation ward. There is no harm in politely enquiring if you will be moved to a more suitable location, and thereafter maintaining gentle pressure. That is another sad truth of hospital life, and life in general. The attention gravitates towards the person who is making the most noise.
You are wonderful, thank you for your post
This is a great piece of writing Sam
That's right Sam. Being a pushy Irish/Puerto Rican American, I say hell with the polite inquiry. Storm the Bastille! I'm shy by nature, but have learned through long experience that -- despite all the cliches -- patience is a punishment when you need something done post-haste. My mother was on the dementia ward for 15 years. They would pump most of the residents full of anti-depressants then park them in front of the television all day. I like this model much more. https://www.nytimes.com/2023/07/03/realestate/dementia-villages-senior-living.html?unlocked_article_code=GOvvd-ByTKsDTeVE49KvUTW4D0xHwLKL3TwJCTFnVQ1UWfwmd9K24lVZgE7zT5fROG4U98as7UqbyUnXS1Or6KWFAGbDCfEAk1vVFk8jQMq8e3C0kLBNfVbrW7dC2MaDnV7SxRuYjW9Xwl3HYGa7fOgkKDrwwBhc_yTLC9YH9AHd0jZIhd5-GqGqNXHRKL9agYfIVG6HV_lsKLLuKsDog3edfpvEl5G-YsDnxtfgLEJBYvTJrTFLjpzxnahmW6agEn9mYD4FO1DgmeRLs6bQtqtPe_QeuWaZhVsatcvUG_fy5VIXDABMfKFlnWtE1ck6KYGyHzjDcvBvricUBFMsyFZK4VBtlDWYEMc5aw&smid=url-share
Dear Hanif, Oh, my! We here are all willing you onwards and upwards! You will get there. Have them check your meds. I was once on a medication that took my appetite away completely. When we checked the teeny fine print, it said one side effect was anorexia. And medication combos can also account for lack of appetite and depression. Please insist they check all this out. And you need to be moved to a much more pleasant situation! This is crazy. We'll all envision a positive move alongside much happier and healthier days. They are coming, don't worry! Thank you for sharing! You have a great, great heart! xoxo
Sharing your journey is kindness multiplied. It is opening my heart, as I suspect it is with others. Thank you.
Dear Hanif
I'm troubled to read your thoughts as you face the night. Hospitals are not conducive to any kind of relaxing night time atmosphere, ironically, I know. In many ways they are there to repair the very sick, rather than take measures for the holistic healing of us on-going broken types.
Please do not bow down at the mythological altar of The Doctor. I am an expert and you can trust me. If you cannot do it yet, ask your loved ones to fight back and ask difficult questions. I remember doing this when I had a heart attack and refused a certain procedure which I knew wouldn't work. To be so ill and see that a battle was necessary was tough. Yet in the end I recovered in defiance too, at an improved pace by taking on the challenge. Health care staff are wondrous, flawed, overworked, human. Always speak up. It's shocking yet unsurprising they snuck you onto anti-depressants.
Have you ever tried CBD oil or gummies? I suspect you smoked cannabis! As have I, in the past. This legal version doesn't make you high but it alleviates anxiety very well. There are even drinks now with CBD. Perhaps you may even get the munchies.
Have you tried Audible at night? An Alexa? She turns my devices and apos on and off as I need them purely with my voice. At present I am listening to The House of Rumour by my darling friend Jake Arnott who lives nearby me.
Alexa can be an absolute pain (and needs good internet - hot spotting works) but there are many hilarious moments when she hears me incorrectly. Sometimes she is spooky but I do talk to her when my insomnia is savage.
I wish you peace and healing.
Penny
Absolutely right Penny! I like the analogy of a 'mythological altar of The Doctor' . I was often told by a sister on a ward that many relatives don't ask questions. When a patient doesn't have the mental or physical strength , it's important relatives take up the quest. Any small piece of control is a bonus.
Perhaps just a small bit of something simple will wake up sleeping taste senses. A piece of perfectly ripe watermelon on a hot day or a lick of a lemon ice lolly, or a bit of peach or mango. It is best to go slowly - there is truth in the “too much of a good thing” adage.
Hardly a day goes by that I don’t think about your situation and wish in some way to help. You have so much strength and the directness of your words, while heartbreaking to read is inspiring. Your family and friends sound wonderful. I am hopeful for you.
I'm frustrated for you reading this update. Put simply, UK hospitals are a terrible place in which to be ill. They have many kind and hard working people working in them but our hospitals and our health system are quite frankly buggered now. Staying in hospital here is not going to do you the slightest bit of good, it will depress you even more. Fight like hell to go home, be a pain in the arse, have your family and loved ones fight for you too. Going home may bring other fears but at least you won't be alone and you can get proper sleep which I doubt you're getting now. Maybe find out how much a private care package might be initially, you have lots of supporters and followers here and presumably a few modestly well off friends who could collectively contribute to a fund to help you?
We are all behind you and willing you onto the next stage of your RECOVERY.