listening

All in the Mind?

I love BBC Radio 4’s All in the Mind. It takes a compassionate, measured view of what’s new in psychiatry and neuroscience. Presenter Claudia Hammond considers research into the normal functioning of the mind and brain as well as mental disorders and brain diseases. Claudia has been quietly beavering away on All in the Mind since 2006, debunking myths about mental health and mental illnesses. She does other cool stuff on mental health too.

In 2015, I was interviewed for All in the Mind about The Recovery Letters, written by people like me who have experienced depression to help others facing something similar. This is my letter. James Withey, the inspiration behind the Recovery Letters, has been working on a book which will include the original letters plus some new ones. It comes out later this year.

Anyway, Claudia ran a positive piece about the letters. So when I was contacted a few weeks ago by All in the Mind producer Lorna Stewart about making another contribution to the programme, it was easy to say yes. This time, it was to ask for my thoughts on a series of questions from listeners about getting the best from mental health services.

I went to the studio and had what felt like a good conversation. My understanding is that there will be short inserts most weeks amongst the main items that make up the programme. It is called An Insider’s Guide to Mental Health Services. Here is a link to the first programme.

Are here are some things I thought about before I was interviewed.

  1. We are all as different on the inside as on the outside. Advice that works for one person will not work for another. To be honest, the concept of even giving advice on such a sensitive subject troubles me.
  2. On the other hand, there are things it can be useful to think about which people who are distressed or in crisis may either not know or they may forget. Plus, mental illness messes with your head. It can make you think bad things about yourself and consider doing bad things to yourself which you might later regret. It certainly did that to me when I had my last episode of depression. A kind word from someone who has been there might just be a lifesaver.
  3. Just as with physical illness, mental illness isn’t one thing. For example, a chest infection can be painful, even dangerous, but will almost certainly get better with treatment. Whereas lung cancer is likely to be more serious, and some types cannot be cured, just palliated. While no mental illness is nice, they can vary hugely in severity and impact. In our modern world we have become preoccupied with diagnoses, so I won’t start listing all the possibilities here. Suffice to say, some people will experience mental illnesses which cannot be cured. Therefore they have no choice but to find ways to live the best life possible with that particular condition and all it entails. Others may experience episodes of mental illness from which it is possible to make a full recovery. This is a great blog on the subject by Bipolar Blogger.
  4. Staying in bed all day and avoiding other people may be all you can face when you are experiencing an episode of mental illness. But in almost all cases, it is not a good idea. Humans are social and even the shyest and most traumatised among us need human contact. This is why we are encouraged to talk to someone – a GP, a trusted friend or family member, or to call a helpline. Here is a recent blog by me called What to do on a bad day.
  5. All sorts of things can go by the wayside when we are experiencing mental illness: getting enough sleep; drinking sufficient fluid; eating healthily or even at all; taking exercise; going out in the daylight; spending time in nature and/or with animals; being with those who love and care about us; personal hygiene; wearing comfortable, weather appropriate clothes; not self-medicating with alcohol, nicotine or other substances; and spending time doing meaningful things. It is important not to force yourself, but trying to reintroduce a few of these gradually will almost certainly help, even if you don’t feel like it. Just do it gently. Take baby steps. And be kind to yourself. Progress towards recovery is likely to be slow and not linear.
  6. I am sure there will be quite a lot in the programmes about medication. It is a hotly debated topic. I will just say this: the best clinicians will work with you to find the right treatment for you. It might or might not include medication. What is right for someone else may not be right for you. Also, most medications take time to start working. And sometimes the side-effects can be really tough.
  7. It is true that anyone can experience mental illness. But people who face other major challenges find it even harder to cope with and experience more lasting damage than those who do not. These include financial hardship, homelessness or insecure housing, loss of job or role, social isolation, bereavement, loneliness, abuse past or present, bullying and relationship problems can both cause and exacerbate a mental health problem. We are all born with a level of mental resilience which is then either added to or depleted depending on our childhood experiences. How we respond to later trauma is linked to these early experiences. Most therapy is about learning to understand ourselves better and to care for ourselves in a positive, kind way.
  8. Specialist mental health services are experiencing unprecedented demand. They are all making attempts to modernise and improve access to services and the appropriateness of treatment. But severe cuts have been made over the past 5 years which have reduced availability and in some cases removed very good services altogether. The government says they are reversing this. Some of us are keeping a very close eye to see whether they honour their word. But this doesn’t mean you will get poor care if you are referred to mental health services. You may have to wait a while. But you will find that most staff go out of their way to provide effective, compassionate, safe care.
  9. Your key mental health professional is your GP. Many GPs are really good at mental health. It is a significant part of their work. But they are also under huge work pressure. If yours seems to be one of the minority who are not so good, or you can’t get an appointment, you can arrange to see another doctor at the same practice or even change practices. It is a good idea to do this at a time that you are not in crisis.
  10. People who need help with mental health problems are not weak. In fact they have to be very brave to ask for help, and to do the things that are needed to recover. Doctors, nurses and therapists can help, but most of the recovery work is down to you. People who live with serious mental illnesses are heroes. They should be applauded every day for their tenacity, patience and courage.

The most important lesson I have learned, and it has taken me far too long to learn it, is that I need to listen to myself and be honest with myself about how I am feeling. At the time, it seemed that my last major episode of depression came out of the blue. With hindsight, it had been brewing for many months. How ironic that I, who was running mental health services, should have been so bad at spotting my own warning signs.

Intervening early and getting help when you need it should be standard across the UK. I make no apology for encouraging listeners to All in the Mind to ask for help if you need it, and not give up if it seems you aren’t getting it.

And if you are feeling desperate or suicidal, please talk to someone. There are various helplines listed here. The one I personally recommend is Samaritans on 116 123 or email Jo@samaritans.org. They will listen and help you make your own decisions. It may not sound like much, but it can be the greatest gift of all.

My nine lessons for Christmas 2016

  1. In November, my friend Sally took me to The Church of St Mary the Virgin, Putney and reminded me about The Levellers. As she read aloud from Thomas Rainsborough’s famous quote, I felt a shiver. “For really I think that the poorest he that is in England hath a life to live, as the greatest he. After this terrible year, surely we can remember this, and act accordingly?
  2. History shows that, when times are hard, false prophets can persuade those who are suffering to blame the “other” rather than the ones who are the true source of their misery. And cause them to use their precious vote in ways that challenge more liberal values. But if we merely condemn such choices, we have no hope of turning the ugly tide lapping our shores. After the results of Brexit and the US presidency, I have come to realise that we need to judge less and listen much more so that we can understand why people are so angry with the established order.
  3. This year we lost far too many extraordinary people, including the wonderful Jo Cox MP. She wasn’t afraid to work with those on the opposite side of the political divide nor to challenge orthodox views. I have concluded that members of political parties who spend all their time arguing or blaming one another rather than seeking common cause, as Jo did, are a major part of why so many are mistrustful of politicians.
  4. This month, the government announced that, as a society, we are not doing enough to prevent suicide. And that there will be league tables published soon to show which areas are lagging most. As one who devotes time to volunteer in suicide prevention, I find this extraordinary. We can do a great deal to reduce the incidence of suicide by tackling stigma, offering education and training and supporting voluntary services such as the Samaritans. But ignoring the main reasons for the rise in the rate of suicide is dishonest. Benefit sanctions, fitness to work assessments and cuts in social care support are causing hunger, homelessness, and shame from being a burden amongst the most vulnerable of our fellow citizens. And for a growing number, the only options at night are a tent, a homeless shelter or a shop doorway. No wonder that life feels increasingly unbearable to some.
  5. And while the government congratulates itself on low rates of unemployment, zero hours contracts and minimum wages are directly causing the rise in reliance on food banks, payday loans and other expensive credit. It is not refugees or so-called benefit scroungers we need to fear. It is people who “create value” (what a meaningless and loathsome phrase) from the misery of others. The Mike Ashleys and Philip Greens of this world. And the Rupert Murdochs and Paul Dacres who would have us believe that fear of the other, rather than compassion for our fellow citizens, is what should drive us. But I realise that grumbling to those who already agree with me is not enough. I’m going to do better in 2017.
  6. I have been learning how to apply the Myers Briggs Type Indicator (MBTI) to use in my practice as a coach. I could bore for Europe on this subject, but suffice to say, it has been a revelation. And the greatest insight of all has been finally appreciating at a very personal level what Carl Rogers meant in 1961 when he said: “What I am is good enough, if I would only be it openly.”
  7. I have also been learning how to be a Samaritan. I will be writing more about this next year. All I need say for now is that I gain as least as much as I give, and that the training and support for volunteers is absolutely wonderful. And with all that I mention above, and at this time of year, Samaritans are needed more than ever.
  8. This year, we lost so many wonderful people, including Twitter friends @GrangerKate and @GraceAndGloryDan. I would like to thank Zoe, courageous mother of Adam Bojelian. Adam sadly died last year. And Zoe reminded me that people who are bereaved value nothing more than being given the kindness of time to talk about the person they have lost.
  9. Finally, I have learned that people like pictures of cats. So here is William, my personal pet therapist, to wish you peace at Christmas. And may those who are lost, lonely or grieving find kindness among strangers as well as friends.

Improving the NHS: with added tribute to Dr Kate Granger

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Last week I was introduced by Dr Kathy McLean, Medical Director at NHS Improvement to 180 people comprising senior NHS clinicians, managers, directors, chief executives, patient representatives and members of staff at NHS Improvement, including most of their executive team. And I wondered how my homespun talk about improvement, leadership, the universe and everything would go down.

As it turned out, quite well.

The cartoon above was drawn by Inky Thinking. I don’t know how they do it, but they capture everything you say that you want people to remember.

Here is a word-based precis:

  1. If you forget that culture always trumps strategy, your efforts to improve services will be ineffective. I’ve been there and occasionally done it the right way. But more often the wrong way.
  2. You can’t help others to improve unless you are OK yourself. I have form on not remembering this.
  3. Leadership in public services has never been harder with our 24/7 media, including social media, and the anti-public sector rhetoric that appears in most newspapers.
  4. Plus we live in a post-fact world – see this article by Guardian Editor-In-Chief Katherine Viner. People believe things that are not true, and don’t believe things that are. I’ve had personal experience of this. And it is horrible.
  5. Being an NHS leader is very lonely. Never more so than when you are awake at 3am. People get in touch to congratulate you when something goes well. But when things go wrong, people you thought were friends seem to melt away.
  6. There is never enough time to think when you are running NHS services because of competing demands, often from those who are meant to be there to help you make improvements. But you must create time to think or you will make bad decisions.
  7. Filling senior vacancies in the NHS is getting harder. And we should worry about this. Because if we aren’t careful, the only ones who apply to be in the firing line will be those who don’t care what others think about them. And that would be very bad for all of us.
  8. We cannot separate leadership from mental health. In my opinion, people who experience mental illness from time to time can make exceptional leaders. It is only one thing about them. Plus, they develop skills through therapy that are invaluable – such as managing their own mood, listening really carefully, and not making assumptions about others.
  9. I have experienced depression off and on since the age of 15. A nurse said something damaging to me when I was 22 and vulnerable which I absorbed deep into my psyche. For the next 36 years I stigmatised myself, despite being an active campaigner against the stigma of mental illness. It was when I finally came out about my experiences that I was able to address my self-stigma. I have made many friends since then. But if only I had done it before, I could have been a better, more authentic leader.
  10. Mental illness messes with your head. It affects 1:4 of us. But 4:4 of us should care about it, not just on humanitarian and economic grounds, but because almost everyone can be affected. We are all on a spectrum of resilience, and if enough bad things happen to us, especially at a young age, most of us will experience post traumatic damage.
  11. When I appeared suddenly to get ill with an acute onset of depression in 2013, it was a culmination of things. My own susceptibility, but also workload, loneliness, weariness as I approached retirement, not taking care of myself, listening too hard to my own negative voices, and putting a lot of energy into maintaining a positive front. It wasn’t caused by internet trolls. But they didn’t help.
  12. So please don’t do what I did. Get to know yourself. Talk to yourself honestly about how you are. Talk to your loved ones. Take care. Be the best version of you, but make sure that it is you. And try always to see yourself as an improvement project – this makes it easier to accept criticism without it cutting you to your core. I’ve only learned this in the last few years, and it is a revelation!
  13. I am lucky. I have dear family and friends. And I got great care. I was able to go back to a job that I loved, which was a major part of my recovery. I know it isn’t the same for everyone.
  14. Since the summer of 2014 when I finally hung up my chief executive boots, I’ve been helping others in various ways to be the best version of themselves. And I’ve written a book which I hope you will read when it is published later this year.

As I finish this blog, I think of someone who embodies improvement in everything she does. The talented, compassionate and extremely resourceful Dr Kate Granger. Kate is currently in a hospice in what are probably the final stages of a rare and awful form of cancer. But as well as sharing the intimacies of her progress through terminal illness via her wonderful talks and social media, Kate has also revolutionised the NHS and other healthcare systems around the world with her #HelloMyNameIs campaign. She has written several books, and completed amazing things on her bucket list. And not content with that, Kate and her husband Chris Pointon are urging people to make donations to the Yorkshire Cancer Centre, a small charity that helps improve the quality of life of people living with cancer. You can donate here.

Kate and Chris demonstrate that being a leader isn’t a job, it is an attitude of mind. That anyone can make a difference if they focus on something that matters, turn a great idea into an innovation and build support for it through honest endeavour. We can all learn about improvement from them.

May you go well, both of you.

25 July 2016 postscript: 

Chris has just posted on Twitter that his wonderful wife died yesterday peacefully in the arms of her family. 

I only met Kate once. I will never forget her. She had an extraordinary stillness and presence. I hope the knowledge of the difference she has made and will continue to make for many years to come will sustain Chris and all who loved her in the difficult times ahead. 

My heart goes out to all of you. May her lovely soul rest in peace.
 

 

 

 

Beaten. But not broken

 

The Chattri, near Brighton

The Chattri, near Brighton

Dear Everyone

There are five stages to grief, as explained by Kubler Ross.

  • denial
  • anger
  • bargaining
  • depression
  • acceptance (sometimes called accommodation)

We do not progress through the stages in a linear fashion. Some may have to be repeated. If we are not careful, we can get stuck at any of the first four, and never fully achieve the final one, of acceptance.

Today, those of us who voted Remain are feeling some or all of the first four stages. Only a few have reached the fifth by now. Some never will.

We have a right to feel angry. The referendum was unnecessary. Some time ago, David Cameron made a promise to appease certain members of his own party. He probably never expected to have to keep it.

After the result, the only honourable thing he could do was resign. As he did so, he was trying hard to appear to have achieved acceptance. But the catch in his voice gave the game away.

And he may never achieve it. Political careers in high office almost always end in failure. But this is failure of a most awful kind. Perhaps we can be kinder if our current Prime Minister shows statesmanship over the coming weeks and begins to chart the way through unprecedented choppy waters.

The reason many voted Leave was not about immigration or perceived European bureaucracy. It was a protest vote against the greed of big business, the banking crisis which has affected poor and vulnerable people much more than those who caused it, and a political ruling class that seems dangerously out of touch.

Can we listen really carefully to those who feel this way? We need to heed their voices, as well as the cries of anguish from those who voted Remain. And listen to both groups above the triumphal clamour of the minority who believe we have “got our country back”.

It is going to be very hard. Once hatred has been unleashed, it is hard to put it back in its cage. The rise of far right politicians and alliances are real and present dangers.

The size of turnout demonstrates that when people feel their vote will count, they are more likely to use it. So maybe we have to rethink our position on our current electoral system that disenfranchises so many.

And perhaps those towards the centre or on the left politically, if indeed such definitions are even valid in this context, can stop fighting one another and think about what matters? And who our real enemies are?

In the early stages of grief, it is important not to make momentous decisions. Words or acts of anger, hatred and blame will not help us.

So let’s hold on. Let’s be kind, to ourselves and to others. We are beaten. But we are not broken.

Yours, in solidarity with the human race

 

Open dialogue

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I went to a conference in Nottingham yesterday to learn about a technique called Open Dialogue. I wanted to know more because of how it has revolutionised the care of people who are in crisis in parts of Finland and the US, reducing demand on mental hospitals and transforming lives.

I care deeply about mental health services, although I don’t run them any more. These days I campaign to make them better. I volunteer in suicide prevention. I chair the Time to Change mental health professionals project. And sometimes I need help from services myself.

I wish you could have been there too. Some massive pennies dropped, not just for me but for everyone who hadn’t already appreciated the possibilities. We learned that Open Dialogue is about being with people rather than doing something to them. And we realised that here was a way to mend things that previously seemed unfixable.

Let me explain.

There are some who say that the NHS is broken. And that mental health services are badly broken.

I’m not sure that broken is a helpful way to describe things. I prefer to think of them as badly wounded. And when someone is wounded, you take care of them.

I believe that people in highly influential positions do care about mental health. They are just unsure about what to to do, other than saying they care. They know that mental health services around the country are buckling under the strain of increasing demand. Referral rates have never been higher. And continue to climb. Services find it increasingly difficult to discharge people because there is nowhere for them to go. Staff are overwhelmed, and there is a growing recruitment and morale crisis.

Added to which, successive governments say one thing about the importance of mental health but allow the opposite to happen regarding funding. Despite the fine words and promises in the response to the Mental Health Taskforce report published in February, we heard just a few weeks ago from NHS Providers that mental health trusts are not seeing the promised investment and some are reporting funding cuts in 2016 – 2017. Parity of esteem? Actions speak louder than words.

How might Open Dialogue help?

Firstly, it isn’t simply a technique for listening really carefully to people who experience trauma and distress AND their families so that together they can work out their own solutions, with support. It is also an extremely respectful way for people to relate to one another, in teams, across teams, organisations, health care systems and society. Even the NHS.

Secondly, Open Dialogue is the antidote to what is sometimes called the biomedical model, when doctor knows best and patients are compliant. This works when there is a fairly simple problem and solution. For example, a broken leg. It doesn’t work for the vast majority of health conditions in which people need to become the expert themselves if they are to lead fulfilling lives. And it certainly doesn’t work in mental health. Mental health professionals know this. But we organise and regulate mental health services as though we were fixing broken minds instead of legs.

Open Dialogue builds on what some call the Recovery Model, based on hope and fulfilment rather than simply diagnosis and treatment. It provides a method to apply a recovery-based approach, involving the whole family and team. It is the antidote to outpatient clinics and ward rounds.

Thirdly, Open Dialogue provides the basis from which to challenge many of the perverse incentives and restrictive practices that have grown up in mental health care out of fear of incident, media criticism or what a regulator might say. Such as staff spending more time documenting care than in giving care. The absolute adherence to risk assessment even though successive independent investigations show it to have limited predictive value. And risk management, which taken to extremes means that those who might possibly pose a risk to themselves or others, are cared for in inhumane conditions with no privacy or dignity, no sheets, cutlery, shoelaces, phone chargers or indeed any other item that someone somewhere has said might pose a risk. And yet we know that ligatures and weapons can be fashioned from almost anything. And that people who are ill, frightened and alone can be driven to do increasingly desperate things. The greatest risk management tool available is compassionate, skilled attention. Open Dialogue offers high quantities of that.

Open Dialogue is being used in a growing number of services in the UK. A research bid has been submitted and passed the first round of scrutiny. If successful, it will explore human, clinical and cost effectiveness, as well as developing a model that is scalable and sensitive to local circumstances.

I want to thank everyone at the conference for opening my eyes. Including Tracey Taylor, Simon Smith, Pablo Sadler, Lesley Nelson, Jen Kilyon, Russell Razzaque, Mark Hofenbeck, Julie Repper and Steve Pilling.

And to Corrine Hendy, who I first met at an NHS England event about putting patients first last year: Your journey from being locked in a mental hospital to becoming a skilled mental health professional, public speaker and highly effective advocate for Open Dialogue, is more inspirational than any you will hear on X-Factor. I want to repay the inspiration you have selflessly given.

I’m going to do what I can to spread the word.

 

How do you feel today?

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They say you should do something scary every day. I’m not sure. Although I do know that I need the occasional exhilaration of putting myself in an uncomfortable position and overcoming my nerves to make me feel fully alive. Such opportunities came along a bit too frequently when I was a chief executive. But these days I probably don’t scare myself often enough.

Today is the annual Time To Change #TimeToTalk day. Last night, the choir I recently joined held an open mike session. And I decided to terrify myself at the last minute by offering to do a turn.

Although I can follow a tune and love to sing, I am not like the other wonderful acts that got up and entertained us. I have no special musical talent. But I can talk about stuff.

So I found myself standing there and explaining to a packed pub why I had decided to join the choir. Which is that singing with other people is really good for me. Since school choir days, I have yearned to sing again in a choir. I am full of wonder at being part of something greater than myself. I love having to concentrate really hard in order to follow the music. It moves me when a piece we have faltered over suddenly comes together in glorious harmony. Singing with others of a much higher standard helps me to raise my own game. It feels visceral yet sublime.

And I told them about my history of anxiety and depression, and the impact it has had on me, off and on, over 45 years since I was 15. I talked about stigma, including self stigma. And I told them them that I knew I wasn’t alone, because at least 1:4 people in that pub were like me, possibly more. I told about the research of the positive impact of singing on mental well-being.

And then I asked them to join me and celebrate Time to Talk Day by talking to someone else about mental health.

How did it go? Well, I was nervous of course. But they were lovely. I got clapped and cheered. There were a few tears. And some lovely conversations later. I shouldn’t really have expected anything else. The choir is amazing and our conductor MJ is not only a multi-talented musician. She is also an inspiring, compassionate leader. She gets the best from all of us, as singers but also humans.

If you have experienced mental illness but feel shy about telling people in case they judge you, maybe you could do something scary today? Please think about taking the plunge and talking to someone about it, what you do to cope but also how it is only one thing about you. Talk to a colleague, a friend or just someone you happen to bump into. Use Time to Talk Day as your excuse. And ask them about their own mental health. Listen really carefully to what they say. I think you will be pleasantly surprised by your conversation.

And how do I feel today? I think you can probably guess :):):)

The ones left behind

It’s been a month for losing people from the soundtrack of our lives. David Bowie, Alan Rickman, Mott the Hoople and Bowie drummer Buffin, and Glen Frey of the Eagles. If there is a heaven, may they rock on up there together.

But ….I’m also weary of gushing eulogies from people who never saw any of them live. Public outpourings of grief about people we have never met started to grow to excess after Princess Diana’s death. And social media has allowed this to multiply. There is even fear of criticism among those in the public eye if, on hearing about a death, they don’t immediately tweet a brilliant yet touching epitaph.

I remember being told at school that “empty vessels make most noise”. It’s not the kindest quotation from Plato. But there is truth in it.

Perhaps I’m feeling less sympathetic because my small family got even smaller with the loss of a dear relative over Christmas. She was a very private person. I don’t have permission to say anything about her or other family members. All I can say is that I have been very sad. Which is horrible, although better than depression because it a clean emotion and has a point. It also puts the sadness I feel about David Bowie et al into perspective. I miss them being there. But I am not bereaved by their deaths because I didn’t know them.

When someone we know dies, whatever their age, we can help by remembering them with love and by caring for those closest to them who are left behind. There is usually a flurry of activity at the time of a death. Phone calls and social media messages can all help. Even better are letters and cards that the bereaved person can read time and again. The right words may be hard to find, but they can bring great comfort. I know this.

What helps even more is keeping in touch with the person who is bereaved. The first few weeks and months are bewildering and lonely. Bereaved people may seem to shun others, but they desperately need social contact. Most people will at some stage go through a phase of feeling angry, sometimes for being left behind, sometimes even directed towards the person who has died. This is normal. The loss they feel is raw and cruel. They need an outlet, someone to hear and acknowledge their anger and allow it gradually to dissipate.

Later, when they can bear it, they will find that they yearn to talk about the person who has gone. To go through photographs and remember things they said and did together. The kindest thing you can do for them is to listen really carefully, to show true interest, and do nothing to stifle these reminiscences. They are vital for the gradual healing process.

Sometimes being bereaved can make you feel like a pariah. People seem to cross the road to avoid you. You may no longer be invited to social events where you were once welcome. I have heard those who are widowed and parents who have lost children speak of the added pain this can cause. And it is so unnecessary. Grief isn’t catching. What difference does it make to have an odd number at dinner, for example, or for someone to attend a birthday party even if they no longer have a child to bring?

I hope the families of David Bowie, Alan Rickman, Buffin and Glen Frey encounter kindness, and have friends who stick around for them over the coming months and years. The accolades of fans will offer some small comfort. But like any of us, the thing they will most need is love and support from those close to them.

There are many ways to be a good Samaritan. And the best one is by being there. I send love to all who have lost someone dear. May their dear souls rest in peace. And may those who are left behind find comfort and kindness from others as they grow accustomed to their loss.