It’s snowing! My husband is reading my blog, pages turn and when once it felt all was lost, things change. 9:30am and no call from my cousin. With each new day a fresh perspective. On we go. Happy Easter if you’re off, more so if you’re not.
Racism report
I haven’t read it yet. Maybe I never will. Oh how the media love replicating the division that continues to harm. Did you see some complaining not enough being said about working class boys underachievement. Don’t they realise it’s all part of the same thing? How do you achieve anything when those around you doubt your abilities, reinforce any self doubt, make it impossible. Don’t even notice you’re there except when it comes to finding a way to limit or put down.
I looked for jobs. Nothing. Good in a way, it’s hard to sell yourself when you feel worthless, hard to remember how I had the time, energy or passion. Yes I feel robbed of that too. Some speak of mission. Yeah well, enjoy, not one I was valued in. Hard to see myself as a stakeholder in that. When you’re not valued for what you bring, treated like a worthless piece of shit, hard to shake that off and just move on.
Met a friend in passing while in the supermarket. She’s left her job. It wasn’t what it used to be, now just a tick box exercise, jumping through government hoops. Job sapped of meaning and care. Shame, she has so much to offer. She’s found another, marking time, searching for something more suitable. Systems that beat the life out of people. I didn’t use to be this miserable. I’m angry that I allowed myself to be used, eagerly sucked it up. How dare you. You know who you are. You people who use people then throw them away.
It’s interesting to me to see the interest from Palliative care getting work published about racism, guess I’ll look out for that. Cogs grind slowly, are people beginning to wonder if there’s something in it? Who would have thought it hey that a system of oppression would effect you too. I’m defeated by it, that whiteness that works so well. Those gnawing gaps that some choose not to see, leading to starvation in the same way that they always did, cages that are both physical and psychological.
I’m struggling to see a way forward. I think that’s a symptom of having your worth dismissed, hard to find that again. This violence that is usually held in silence.
Those around me say give up on my cousin, at least that might help, won’t drag us all down. I can only see it getting worse as physical health declines. None of us have the strength left to help. How many years has it been, getting no further. We walked today, it doesn’t help, probably getting worse, nothing helps anymore. I feel done.Â
The evidence of atrocities is all there. Someone had posted an original, a museum cited the collection and original source. I tried to make sense of it, seeking the translation. It still didn’t make sense. Together but separate.
Our shared history of trauma as oppressors and oppressed. The ordinary-ness of it, presented as everyday and that is how it is.
Richard Okorogheye is missing, his Mum, Evidence Joel is a Nurse. When she was concerned for her son she went to the police. It sounds like she was pretty much dismissed. Joel is a staff Nurse, she understands duty of care. She has specific concerns based on what she knows both as a Mum and a Nurse. As a Mum of a teen my heart goes out to her, she must be worried sick.
Easter baking
By the time I got to speak to the mental health Nurse I honestly couldn’t say who has the problem. Hopefully they will help both of us. Helpful conversation.
In other news I’ve dug the hole for the tree with physically distanced collaboration with neighbours most closely effected, apparently they were planning a tree so are very happy. Hopefully there’s room for two so maybe they’ll be able to plant one too.
Chatted about the misunderstandings that set in when you’re both struggling to hear, mentioned that hearing app. https://www.who.int/health-topics/hearing-loss/hearwho and was interested to learn of musical ear syndrome, something I’ve never heard of before. Here’s an article I found about it: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5353248/#:~:text=Musical%20ear%20syndrome%20(MES)%20is,could%20be%20confused%20with%20dementia.
The plan was baking but not exactly as I envisaged.
Sprinkled these about too:
Only two phone calls today. Lots of calls to friend while out apparently culminating in a panic, a taxi and a fall. Grazed knees but ok. Other friend has withdrawn completely, just too many calls. Same pattern.
Vaccine
Walked down to the pharmacy this morning, early for my vaccine. First time I’ve seen it without a queue. Pretty much straight in and out, job done. Funny isn’t it. All that work that’s gone into it behind the scenes, all those thousands of people who have been part of the trials, all that coordinated working that’s got to here.
Some people say they feel a bit dodgy after it, I’ve heard. Guessing that’s a good thing as our bodies recognise and respond, creating those protective antibodies.
I’m remembering how crap I felt after my typhoid and cholera vaccinations. Yep, that wasn’t great. Only lasted a day or two from what I can remember. Pleased that it gave me the protection I needed.
It’s a peaceful spring day today. Only one call so far today. Children off on Easter holidays.
We missed numerous calls while we were out. Did I mention the mental health Nurse phoned, said they’d call next week. It’s so annoying when I miss those important calls, always seem to happen when I’m tied up in the drama, like when I missed my appointment for my ankle. Forgot I even had it. It’s like there’s a contagion to the whirlwind of despair.
Fear of contagion is spoken about in whiteness studies. How areas are racialised and set apart. How land is valued or not because of this, people set apart. Fears of ‘matter out of place’ as James Trafford calls it. I reflect on the external and internal nature of this.
I’m lost in my part in this, this broken mirror of reflection that Dr Kinouani describes. Lost in language that has no impact, except perhaps to get me sectioned going forward. Daily discussions about whiteness met with confusion, hostility or silence. The name loses people, met with such confusion.
Someone mentioned that it’s systems and cycles of abuse. Yes from the top to the bottom, within relationships. Reflecting on how that shows up in work, what we buy, the resources we exploit. Did you know we’re running out of sand? The sand we have is the wrong shape apparently. People fear further grab of resources. We’re running out of experienced, life saving Nurses too. The response to advertise for ‘health professional’ rather than a Nurse. Sweep it under the carpet, it’s all about mental health…
My cousin isn’t family, she’s work sometimes. The fact that she’s not family down to cycles of abuse, some days are easier than others. And round we go again. Global, National, Community, Individual. How do we interrupt what’s going on, stop this abuse?
In other news, we’ve been talking about anniversaries 59 and 19 years. Getting trees to celebrate. Gone for a Cox’s Orange Pippin. We don’t have room to plant it, expecting we could do some community good. Chatting to our neighbours about what might be a right plan.
Easter holidays are busy here, not sure many of the group’s here are locals.
Friends are out, some recently out of hospital, looking pale in the sun. Made today’s physically distanced walk a little easier. Wondering if our visitors have learnt a thing. But at least it’s safer outside.
Perhaps the sun is helping a little, though even an ice cream was not welcomed, focused on when was the next call. We need help around these phone calls, I’m not sure it’s helpful life planned around them, preventing living rather than sustaining it.
No ice cream for one of us, too fearful of cross contamination with nuts. Allergies suck the fun out of life. Made do with the money, but it’s not really the same.
So on to mint tea tasting. Always a go to activity. Which one’s your favourite? Bless, hope we never grow out of this. Spearmint, chocolate mint or garden mint
Banking
I was listening to a spokesperson from Santander on the radio. There is such a disconnect from what I see here. I’m not talking about Santander in particular, we have a branch here. I’ve seen their queues.
When we walked through town the other day with all the boarded up shops and to let signs I couldn’t help but notice the long queues outside the bank and building societies. People leaning on their sticks, on their mobility scooters. Young people looking worried, waiting in line. Who are these people making the decisions, they’re not seeing what I see.
Recently heard about ethical banking, moved so that investments don’t work against our health. You?
Thinking of the people I met, sanctioned so they couldn’t eat. Arguments over money. Who would have thought £5 would cause so much disquiet.
Just get some over the counter medication for that. It’s a micro aggression if you don’t have any money.
Saw on twitter, someone advocating prescribing money for poverty, given what we know about deprivation and health.
Remembering how I met a family, hadn’t appeared in court, no transport to get there, no money for the bus fare (£9.20 adult return), debts accumulated after they’d lost their job. A mistake with housing benefit, no fault of their own, plunged further and further into dept.
Remembering how someone I met just needed to have a poo. So uncomfortable for the system when you’re bunged up. Eating regularly helps, not something people can do if they are reliant on charitable food handouts. (Link to managing constipation https://www.nhs.uk/conditions)/constipation/
What constipation are we living with in our systems? Time for a change?
All at Sea
Wrote this back in the winter, seeing it sitting in draft. It’s warm and sunny today, half term, a day to be out but worth a little time reflecting on what might have changed…
On the way home from collecting my daughter from school after a pupil tested positive for covid, I passed someone who’d been life boat crew from my childhood. I wonder how they’re getting on. People didn’t get the support they needed years ago. Hopefully that’s changed now. Thinking of those deeply effected by what they saw during the 53′ flood and obviously more recently with the drownings we hear about every year. I know for the rescuers it will deeply effect the way some of them see death and dying and would undoubtedly have a deep impact on their view of dying. The thing we know is that talking to others helps us through the stormy waters of grief. Another good reason for us to look out for each other and ask for support if we need it. We also know that Covid has and is a psychologically traumatic event, because of this it can trigger old psychological traumas so we need to be extra mindful of looking after ourselves. I’m saying this to myself as much as you! https://www.youtube.com/watch?v=It9TXepTMWAhttps://www.sthelena.org.uk/how-we-can-help-you/bereavement-support
In these covid days, loss of schooling disproportionally effects those with learning disabilities and those from marginalised backgrounds, and the deaths?
“the evidence suggested cognitive impairment was disproportionately over-represented in homeless populations. Cognitive impairment was found to be both a risk factor to and perpetuator of homelessness. Risk factors for homelessness were similar to those of the general population, though exaggerated by sequalae of certain cognitive impairments.”
“All electrical installations in a rented property must comply with the 2018 edition of the IET Wiring Regulations (BS 7671:2018), the electrical test will be valid 5 years before having to be renewed”. Having just chased this up after a notification in October it makes me wonder about people who may be cognitively impaired, will they be chasing it up to ensure their home is safe? Busy carers? Those cognitively impaired due to what life throws at them?
Many of the people I met in my volunteering described themselves as having learning disabilities, some found reading difficult. Even if safely housed now with a history of homelessness they are at greater risk of homelessness in the future. I wonder how they are getting on.
http://www.essex-fire.gov.uk/Home_Fire_Safety/Home_Safety_Advice_for_Carers/
I wrote that ages ago. Today was a breakthrough my cousin had a bath. It’s taken ages to get her to agree. We had help from a re enablement team when the self neglect got really bad last time. It’s funny isn’t it how people will agree to things with one person but not another. That support was withdrawn when the allotted time was up. It’s a shame, we were seeing good progress, slowly picking up life. – I wrote this back in the winter, it shocks me how little has changed, how the last bath was weeks ago, the self neglect unchanged.
I fear our daily meet ups, creating a dependency that I can’t maintain, I’m fearful for the future as infirmity becomes more difficult. Each leaving getting more difficult. The promised call hasn’t come yet, still it’s still early I guess. – Not so early now but no meaningful change, still no input from mental health. The social worker from yesterday said he’d chase up…presumably like the GP tried to, like I have…
I’m torn between her needs and those of the rest of the family, impacting all as these constant demands are. – No change there.
Mum tried to support when she was a child, nothing helped then either. How can we be all these years on bumbling about in the dark, not getting what might help. Everything declined, just sucking everyone into misery. It’s just so sad to see.
It’s not always like that. Sometimes it’s ok, a glimpse of the person who might dare to be but then back into those demands, that feels like a screaming child, a spiral of helplessness. Was decision making ever possible? Bed always the default? Never interested in anything, unwilling to try? What happened to this dear child, then adult? What might help now? We just need some advice. Would CBT even be possible? – the advise never came, we muddled along on our own. That screaming baby not always evident now.
Phone call from the surgery, have I arranged my covid vaccination. Yes I have, could you check if …. plans to call me back. No sorry, I’m only working on covid vaccination…. and that is how it goes. This was then. Different now? One shot done, email to advise I could have the second one sooner. Contemplating what next. The tablets aren’t working, should we dip back into those torrid waters? The limitations of medication? What next?
Headache
I definitely need to be on social media less. I’ve had a stonking headache all day. The more I engage the worse I feel. Others have said they fear this government are killing them.
Travellers feeling very frightened, their way of life under attack yet they have some of the worst health outcomes. People don’t like the rubbish travellers leave, so often they are not welcome here. Chicken and egg. Yet is there adequate space at the sites offered, are there enough? Has anyone asked people what they need or want? Have those same people been able to get their vaccinations yet? Those same people who struggled to access water in this country. Really here in 2020/21
My feelings of depression worsen by listening to the so called news. That news that leaves out the big stories. I wonder what things would look like if we saw the news from different countries. Those who look in, those who have a different experience of us.
Ten members of staff at the test and trace place, two cars. I wonder what we’d achieve with staffing levels like that in Nursing? Or that kind of investment in public health. I wrote this blog yesterday, left it because I was feeling unwell. Wrote something else today but coming back to this now. So the yesterday’s and today’s no longer make sense. Hey ho. We’re avoiding perfection remember but still trying to be our best. An interesting tension, new and unnavigable perhaps but avoiding those obvious faux spelling errors that just don’t look good, make some cringe.
Yesterday I took part in a Twitter chat. Good for cpd, incase it’s possible to get a paid job that’s flexible enough at some point, perhaps in the future if the right role comes up, where I feel my skills would be recognised. Looked at what it is to be a professional. Something to ponder some more. I’m waiting for my soup to heat up. Defrosted the freezer so at least I’ve got something done, while I reflect on the damage to community and self.
I was a good Nurse once. Prided myself on my holistic assessment. Funny how that sentence reminded me of that scene in Charlie and the chocolate factory, the one where the girls head is held by the squirrel and knocked to see if she was a good egg.
There are lots of good eggs in Nursing but there are those who use their power to belittle, steal others ideas, get in the way of innovation, see but choose not to see. Not just Nursing, all walks of life. What with Nurses being people and all that comes with that.
The mental health Nurse phoned back, left a message. Sadly I’m waiting on a return call with an update before I can phone them back. Irritating isn’t it when one thing relies on another. Oh well. The warden would have gone home now. Would have been useful to get another perspective on the situation before I put in my opinion.
A call to remind me, have you arranged your vaccine? Yes, I have but it doesn’t seem right that I can have mine when others in the family are at greater risk. I wonder if it occurs to anyone that family isn’t just in the UK.
We hear about purchase of more weapons, more police powers yet hear less of de-escalation training or how imperialism impacts risk.
People are worried democracy is under threat at the same time we’re in a pandemic. More pandemics to come. Means for peaceful protest have to be found. Personally I wouldn’t feel ok demonstrating though of course it is 20x safer outside. Add in wearing a mask. Just the distance thing a bit more tricky on the train and crammed in where others co-opt the cause. Safer to join a union I’d suggest, sign that petition. That’s of course if they make the slightest difference. Who knows.
We’ve only been on a couple of protests. Perhaps that makes us lazy and unengaged. I’m fearful for a country that doesn’t value the welfare of its citizens. Choses to make it harder for people to live their lives, some of whom live a nomadic life.
Heard today about the quarantine Acts of the 1800’s you think things are strict now! Punishment for failure to quarantine, death without the benefit of clergy. Yup, that sounds pretty harsh. I listened to Professor Gabriel Scally, about how these days there is no local public health, how guidance; international guidance is available but it sounds like the arrogance got in the way. Others thought they knew better. Not sure that’s gone so well.
Reminded again that health v economy isn’t an either or. Health is the economy. Our focus needs to be preventing ongoing transmission, breaking those chains of infection. Do you remember when I mentioned that last year? Several life times ago, it feels like.
Professor Lucy Yardley confirmed how we are not honest with ourselves, prioritising mental health of our loved ones over giving them the virus, prioritising children playing together over transmitting the virus. Says the risks of doing this is even worse as we hear less about people dying or getting ill.
Sweden have many single person households, they aren’t like the UK, they trust their government. Perhaps they’ve been given reason to.
Apparently pandemics are chaotic, the multi variants normal but adding to the chaos. Best we work from home if we can. We see that here. Odd people at their desks, seen through the window as we walk passed. Stay at home if you are unwell (not just covid).Â
Plumber and window cleaner called today. Socially distant, wearing a mask. Would they be supported to isolate I wonder? Do we have those working public health professionals to manage outbreak control? How’s it going with the ventilation in schools? On the underground? Wards?
I heard about how New York department of education have a ventilation report for each classroom, identifying what needs to happen if hasn’t already been done. Remembering those high windows in my primary school as a child. Thinking about the high levels of bio security at the boarders in Australia. Hilarious that Dad wasn’t quite frisked for having bananas but it wasn’t far short. Remembering how we had to ditch the snacks for the children, a bit stressful when you’re not sure if you can get the food that’s safe for allergies.
I wonder what kind of covid security they have in place at airports and ports. Do we have any kind of system like that I wonder, sounds like we don’t. Why wouldn’t we do that? What is recommended internationally?
I’ve been reminded of my Aunty. As she was dying at home we sat one night round her bed, exchanging stories of how she touched our lives. Me of skiing and plenty of laughter. Apparently she came from a proud Romani family. I wonder what she’d make of the assults on her heritage going on right now. So awful to see people so distressed, frightened for their future, aware of their past. How could that be different I wonder?
It’s funny isn’t it how much about people we don’t know. Just see that very tip of the iceberg.
Dementia
Today I did an e-learning module on Dementia. Yay I got 100%. So I’m celebrating that achievement as the Swahili isn’t going so well but early days I guess and there’s always a win to be found somewhere. As I get older, like many of us I worry about dementia, so actively work to keep the brain ticking over as well as the body.
I’ve seen how dementia effects family and friends and also I’ve Nursed people coming to the end of their lives with Dementia. A person who may well have had dementia as well as other conditions was a regular visitor who I met during the volunteering. Living alone. A name and address tied to their belongings. Coming for breakfast. Which isn’t there now, I understand. Where are they and their support now I wonder? Any friends or family around? Fortunate to have community around who helped with crossing the road and adjusting clothing.
I remember chatting to someone at the school gate years ago, happened to glance down mid conversation and noticed they had one slipper on and one shoe. Gradually realised they weren’t talking about a child that attended the school just now but certainly long ago. Their partner arriving looking worried, scooping them up into the car, hurried, embarrassed, head down, not speaking such a shame when we could have shared a chat.
Remembering the neighbour in my childhood still cooking for seven, waiting at the gate for family to return. The family long since grown up and moved away. Such a sad thing to see. And another family mortified that their loved one was walking with purpose in the street. Lost and couldn’t remember but knew they needed to be somewhere, just couldn’t quite place where.
Others I know living their best life, seeking early diagnosis, enjoying each day. Using careful adaptations to help with that. Seeking early support (here’s a link to find out more) https://www.alzheimers.org.uk/
Home
Like many of us I’m trying to eat more oily fish. Using a diary to help remember dates, putting keys in the same place so that we know where they are, not that any of that is age related, have done these things for as long as I can remember, remembering the arguments at home, where are the front door keys! The learning module mentioned how apple juice can help too. Well I didn’t know that.
What other things do we not know, chose not to see? Gather round in solidarity with our heads firmly in the sand?
Like many I watched The interview. Taken up with other dramas yesterday I didn’t get a chance to reflect. I just felt so desperately sad at the lack of support. Not something that will be unfamiliar to many. As I’ve shared on my journey our racism is hidden but the wounds so so physically and mentally painful. Each micro aggression felt in the body when the protective numbness stripped away.
The pattern of response to racism so evident to those who live it. Embarrassing to watch it being played out, those same traps fallen into. I hope that private reflection will be assisted and guided by those who can help. Rather than those who seek to keep the status quo or seek to undermine and diminish.
Just because we are racists it doesn’t make us bad people, why wouldn’t we be racists in these systems of ours. Those systems that uphold it, silence it.
What role if any does ancestral trauma play I wonder.
I woke this morning remembering Dr Dwight Turners book as unusually for me I remembered last night’s dream.
I was in a huge warehouse, running, dodging assults. The floor was concrete. It was a war zone, there was fighting, weaponry, a white powder in the air. A young girl in a cage being attacked with long wooden sticks. The aggressor was a man, Chinese.
Reflecting on what it means to me. The warehouse represents our world, not the natural world but the economic one, the running dodging racism, the concrete the unnatural paving, the conflict the state arguments and lack of collaboration.
The girl in the cage wasn’t me. I was an observer of the scene yet running within it. The girl was any girl.
The long wooden stick was the pretence of concern for our Earth, the agitation. The man? My internalised racism? My concern for human rights?
So yeah, that was quite heavy.
Anyway better pick up on the other stuff left over from yesterday. More calls made and received. It’s exhausting. Oh and the powder in the air in the dream… to do with the so called war on drugs and also pollution the search for clean air.
Where exactly is home now I wonder. That job for life?
Sick day
I wrote this a while back, returning only now to update it. Not quite getting round to it, like what happens in life when you’re busy. Like today, how I’ve spent the morning cleaning the windows and letting in that beautiful spring day, letting in that light that we hadn’t noticed we’d missed. Anyway, I’ve got the permission I needed so I’ll share our story:
I spent all day yesterday in bed. Certainly not how I’d planned to spend the day.
It just kind of makes me grateful for each day. We never know what is round the corner do we?
A number of years ago my husband went off for a bike ride, like he does and not long after he left we got a call to say he’s ok but he’d come off his bike and the paramedics were with him.
I can’t tell you what that call was like. Things rushing through my mind not quite knowing what to attend to first. Not knowing how seriously he was injured, despite the reassurances on the phone. Mind wandering off to intensive care, tubes and theatre. An unexpected, unplanned event, like when I found Dad on the floor…anyway back to my husband…
The children were at church with their Grandparents so my dilemma of not quite knowing whether I should collect them first, tell his parents what had happened or just go straight to the scene of the accident. A horrible time.
Despite the shock he was fine, a kind passer by stopped to sit with him by the side of the road, they called the paramedics, stayed with him until they arrived. All fine, ‘just’ a fractured collar bone – a typical cyclists injury we discovered later and luckily no head injury, saved by the now damaged cycling helmet. Yes we’ve got a new one now.
After we got him home from hospital we talked about the what ifs. We’d encountered the very real possibility of him having a head injury and being unable to give informed consent. Here’s a link to more about capacity to give consent. consent.https://www.nhs.uk/conditions/consent-to-treatment/capacity/
From my Nursing I was very aware that it’s important to get something written down and in any case I was at the time fairly clueless as to what his wishes would have been regarding his care, not something we’d got round to thinking much about.
This accident and the realisation that life can change in the blink of an eye prompted us to both make an advance decision and lasting power of attorney. We’d already made our Wills when had the children.
You can find some more information about advance decisions in this link: https://compassionindying.org.uk/making-decisions-and-planning-your-care/planning-ahead/advance-decision-living-will/making-advance-decision-living-will/
I think lots of people, particularly as they get older turn their mind to making a will for their finances, but I wonder how many think to make one for health and welfare? Here’s a link to more about power of attorney, because there are two types the financial one but also the one that allows you control over what happens to you if you lose capacity and cannot make decisions about your health. You can do it online, here’s a link: https://www.gov.uk/power-of-attorney.
We also thought through our personal views on what we would or wouldn’t want in the way of healthcare, this is something that may well change so it’s an ongoing conversation, that we dip in and out of from time to time when life, throws little hints our way. Like for example, my Aunt was very clear on not wanting antibiotics if she had a urinary tract infection, she was in her 90’s in a Nursing Home, health gradually failing, all antibiotics made her feel sick and for her, she felt she was ready to die. It wasn’t something she was worried about, just another marker in drawing her long life to a close, not interested in discussion about different antibiotics. As it was, this is how it panned out. She didn’t want the antibiotics, I’m not sure they would have helped anyway. They might have, they might not, we don’t know but she died very peacefully, the way that she wanted, surrounded by people she wasn’t really close to but this was her choice. We’re all different aren’t we. Not sure that would be my choice but hers nevertheless. She always was a very private person so I guess on reflection it suited her. She was fiercely independent, knew what she did and didn’t want.
I remember when we chose Dad’s coffin, we all looked over the book, I think I’d like one of those, and I fancy that one…so much easier and less of a burden to others when those around us know what we want. Easy to forget, did you make a note of it? That music you said you wanted?
So many people worry about being a burden, towards the end of life, how the disconnected systems of social care make that more difficult, everything a challenge, increasing those worries not the seamless transition hinted at by government, a clunky disjoined system where people don’t pass on information and care needs can get lost along the way, and those who need support don’t get it, supported by those second hand jumpers.
The search for Nursing home care too difficult when you’re already worried, decisions adding to the burden of care, there is some help here ,Help with finding a Care Home | Age UK not that we got to that with my cousin’s partner.
Mostly when we’ve had loved ones ill or dying we just wanted appropriate care within easy reach for visiting, travelling to Colchester adding to the stress, I wonder what difference those early conversations might have made. At least that might be easier these days.
In our groups we would talk about having a rethink about roles as life changed and there were more no so good days, How would you like to be cared for if you had more of those days, those days you might call your bad days or those worse days? Something for us all to ponder. As others have said just like talking about sex doesn’t get you pregnant, talking about dying doesn’t get you dead – sorry for the awful misquote. Sadly those conversations didn’t happen.
Before the bit when you’re discussing the who does the washing up, sitting at the table, peeling the veg’s, that kind of thing, those days that could be used for listening to worries, shared concerns, seems like these didn’t happen either. It’s a gift to look after someone, a privilege but it’s not like it’s a passive thing, a one way street. Not easy though for anyone. Takes a team effort. Can drag everyone down.
I was thinking how my cousin and his wife gathered round their friends to take care of my Aunty, moving furniture, moving rooms, never having enough bedding suddenly, dealing with mountains of laundry, each person taking a shift, trying to help, cooking meals and providing support, reaching out when needed, how providing equipment could only happen at the pace of acceptance of need. Tricky at times, tricky for another cousin.
Makes you aware of the importance of having the right numbers, knowing who to call when things didn’t seem quite right, symptoms uncontrolled. Here’s a link to find your nearest hospice if you are in the UK Hospice UK A life line to some. I’ve heard that phrase used so many times.
Caring not easy for anyone, the emotional toll it takes on all. Hearing some of that from the plumber yesterday. So grateful for the care they’d received in hospital and then at home, grateful for those precious conversations, so they knew what they needed to get on with, the things that could wait.
How hard that is to plan when there aren’t the people around, or there isn’t the right support. Thinking how things could have been so different for my other cousin, with her partner, how those conversations didn’t happen. Hearing he was dying in hospital in Colchester at 2am, the day after she’d being asked if he wanted resuscitation. That didn’t sound right, she was relaying it on the phone, I was struggling to understand, trying to catch up. Tried to support my cousin and understand, this didn’t sound right, surely that’s a clinical decision based on where we are at, he had long term health problems Do not attempt cardiopulmonary resuscitation (DNACPR) decisions – NHS (www.nhs.uk). Perhaps they thought he was sick enough to die. Trying to reassure her but I didn’t understand either, what with not being in the loop. Not quite knowing where we were at. He wanted to protect her, was embarrassed by the medical equipment he relied on, isolated himself and her. I hadn’t seen either of them for months. I wonder how different she would be now if he’d allowed anyone in or if our time together had been more than a brief chat. Did others have conversations with him? Were they seen together. Where does the marginalization sit, mine of her and others.
Decisions made in the middle of the night, did she want to go up there. Didn’t she, what did she want. Neither of us knew. Would he want us there when he’d specifically told me and everyone else not to visit, perhaps not me but I could provide the transport. Everything was a blur, catching up on what was happening.
We sat in a visitors room, waited to see a Doctor, caught up with how he was. I won’t go into the details but it was difficult, life coming to an end without the preparation that could have been there. He died gently and peacefully as people do in real life rather than the movies but the care and attention to planning this part of life wasn’t where it could have been.
Everything was a struggle, we didn’t know where to start. We didn’t know where the important paperwork was, didn’t even know his name. You know in that way that someone has always been called something and it’s completely different to on the birth certificate, know idea where he’d been born or what he’d done…did we not talk at all, that guilt and shame, those gaps that we didn’t know about him…we couldn’t find the pension papers, banking and tenancy agreement, things we needed to pay for the additional costs that come along the way Register a death – GOV.UK (www.gov.uk) so much easier if you can keep stuff all together, know where to find it when or if you need it, hard when you still haven’t unpacked from the latest move. Hard when you decide you’ll bare things alone. Funnily enough they only moved because a window wasn’t fixed by the landlord for years and years. They couldn’t put up with it, moved in the end.
No idea of his wishes, what he would have wanted, I’d tried, perhaps others had too, or not but adding to the stress, not even being able to find relatives. Second guessing if we were doing the ‘right’ thing. No Will, no anything that might have been useful.
I’m reminded of the people I met. How home was lost when in grief those letters didn’t get opened and home lost when their caring responsibilities ended, reminded of how many people live alone in unsuitable accommodation. Everything harder to care at the end. Reminded of those words, we don’t seek help, do we, just get on with it. Perhaps it’s different now?
That must be about the 10th call this morning all these years on. The question that I answered on call number 1, 2, 3, 4, 5, 6, 7, 8. I was advised to let it ring, for my mental health. It’s not working, listening to the phone ring, that unmet need. We’re meeting for a walk. I’ve lost count now of the number of times the phone has rung, I’m coming just let me get out of the door…
We met for a walk, try a little conversation, she tells me she’s bored and lonely, discredits any ideas to ease that, doesn’t want to do anything, try anything. It’s so hard, she wants me to stay longer but when I do it doesn’t help, nothing good enough, nothing meeting any need in any minute, just more company at home, waiting for the next thing, dissatisfied with the now despite the company. After all she’s never lived alone in her seventy odd years. We sit in the sun, spaced apart trying to explore possible solutions, come up with a plan, mostly sit in silence or listening to how bored and lonely she is, words on repeat, can’t notice the sun, the warmth. I ring the Doctor, advised to get another assessment, social services again, this feels like a familiar loop. She’s even more down than usual, lets try again to see if we can find some more suitable accommodation or something, anything, we’ve exceeded all my ideas. We need help, this isn’t getting any easier, if anything it gets worse. No answer, it rings and rings. Hopefully the Nurse will ring back when they’re next in. She says someone rung her, ages on the phone, something about doesn’t fit the criteria but she can’t remember who, what they said or if there is a plan. We explore more options or just try to be. Try to enjoy sitting in the sun. It isn’t working, she wants to go and lie down. I come home. Apparently I missed 5 calls while I was away, calls presumably asking if I’d left yet, if I was on my way.
Oh wait the phone…
A safe harbour for all?
On the rocks 
knowing who to call 
Beach Patrol 
“Caution Unguarded Edge” 
where Butlins once stood
Took a wander. Walking is good for your soul, I’ve found. My Grandad was a great walker. Walked daily from his house in Coopers Lane, along passed Butlins and back through the town. He continued this daily walk in his 90’s until one day he said he felt tired. Decided not to get up that day. The family were worried, do you need anything, should we get a Dr? No, the dog licence is on the mantle shelf, close the door on your way out. Time elapsed and when they went back to the house to check in on him, he’d died. The gentle death of an old man, who’d had a good life and just gently and naturally had come to the end of it.
Grandad used to come round ours everyday for lunch. He’d do a tour of the relatives stopping for a cup of tea and a read of each of their different newspapers. He was big and a little bit scary for me, the four year old. He’d get his walking stick and hook it round my neck and say come here my little tulip. His big coat smelled, I don’t remember what of, just old maybe. I remember struggling to get off his lap and backing away, running to my Mum to hide in her apron. And then he didn’t come round anymore. Lots of people came to the house. I remember seeing my uncles. I remember them as big and loud but not big with laps like Grandad. Standing around, awkward.
Children didn’t go to funerals in those days so I suspect what I’m remembering is his wake. How sad. He had been a daily part of our lives and then suddenly gone. Children need a chance to say goodbye too.
Goodness what a contrast to where we are now. This morning as a family we buried a baby hedgehog we’d tried unsuccessfully to save after finding it in the road. Poor little thing. We said our goodbyes while the gulls screeched over head. It’s was almost like they were shocked to see this loss to our street. How sad, we all felt it.
Maybe it was that sadness that took me to my walk today, reconnecting to other sadnesses. Funny isn’t it how that happens. Like when you go to a funeral and find yourself crying for other people that have gone before.
I’m mindful of how we haven’t had a funeral yet. How that person was significant in our lives. Gone but not forgotten. A glass raised in recognition but wondering when or if we’ll get to say goodbye.
Because you never know how people will be affected or who. So many resources for children and adults too if you know where to look if you wanted to see (link) https://thegoodgriefproject.co.uk/
What about those not on line who just seek someone to talk to, trying to make sense of how they feel?
Gone but not forgotten