ADHD and Grief: in honour of Mum

Dedicated to my Mother - Jennifer Reynolds MBE - who passed away on 29th January 2025.

Trigger Warning: This episode focuses on recent grief, mourning, bereavement, trauma, traumatic grief, with mentions of medical negligence, cancer, death, self harm, eating struggles, insomnia, depression, anxiety, losing a parent, loss of a loved one and how all of this impacts ADHD symptoms and vice versa.

If you are grieving or in need of help, you are not alone. lo siento.
Please do reach out for help HERE

To quote the coat of arms of Mum's home, Trinidad and Tobago
'Together we aspire. Together we achieve.'   
Please join me in taking URGENT action to:
- Stop THE NHS RIGHT TO CHOOSE CHANGES
- Petition to REVIEW THE ACCESS TO WORK SCHEME
- Save THE NHS GRAMPIAN AUTISM & ADHD ASSESSMENT PATHWAYS

WE CAN MAKE A DIFFERENCE! 

If you would like to donate to the Leopard Print Army fundraiser for ADHDAF+ Charity created in honour of Mum, you can do so HERE

You can join the ADHDAF Online Community for invaluable peer support HERE and find out more about ADHDAF+ Charity HERE

Thank you so much for listening and meeting the needs of this griever 'to find the words for the loss, to say the words aloud and to know that the words have been heard.'

Life is tough my darlings, but SO ARE WE.
Laura x

Transcript

 Hello, and thank you for listening. If you've not heard this podcast before, my name is Laura and I am ADHD AF and I'm also griefy AF, but before I dive into that heavy topic, there's a couple of seriously urgent things I have to share that require action. So firstly, NHS England is about to make getting an assessment for ADHD even harder, as if that was possible.

In the show note is a link from the charity ADHD UK with more information and a simple system to email your MP to help stop waiting times rising further and to keep your constitutional right to NHS choice right to choose. So please do follow the link. and protest this change. Alongside that link, you will also find another one.

To a petition to review the Access to Work scheme to ensure that it offers fair and timely support for all disabled people seeking employment. And there's one more.  A final link to a petition to save NHS Grampian autism and ADHD assessment pathways, as unbelievably  Aberdeenshire HSCP plan to close them by the end of next month.

So by the end of March 2025. So please help save Aberdeenshire assessment services. This  So, there's three really important things that you can make a difference to. So please do follow those links. Okay. As the title denotes,  this episode will not be fun.  This is an episode focusing on grief and the impact it has on ADHD, shared through my own lived very recent experience, research, and advice I've been given during these years.

Three weeks since my mom passed away is three weeks today. So if you are grieving, though, I hope you may find the content helpful. It might also be triggering. So please be mindful of that and only listen if you're feeling up to it. If you're not, or in any case in the show notes, there are a list of resources for support.

If you are suffering, you are not alone. So please do reach out.  Usually on this podcast.  Though the questions are scripted, the actual conversations are genuine, and chaotic rambles that just pour out, my own words as much of a surprise to me as any listeners as I'm sure many of you will relate. 

Witnessing a stream of consciousness, almost. But, for this episode I'm actually going to read what I've written.  And partly because it spares riding a wave of anger that could end in a rage fuelled rant, or a wave of sadness so acute that I start sobbing and my voice shrieks octaves only your dog would hear. 

I want to be really clear.  That, none of what you're hearing is masking, per se. It's read, really, more for my own protection. And to actually provide some use to this episode, rather than just my manic misery. And, despite the script, it's highly unlikely I will get through this without crying, but I will try my best.

This episode is dedicated to my mother. Who we tragically lost on the 29th of January, 2025, and who we will all miss  every day for the rest of our days.  Jennifer Reynolds, MBE, or Jenny Sue Bain, as she's known on the tiny islands of Trinidad and Tobago, where she was born in 1947.  This episode is dedicated to her, that perhaps sharing the experience of her passing might help or provide comfort to at least one person listening, and also in celebration of her.

Because alongside her kindness and her loud laughter, Which came pretty easily, and always was accompanied by tears streaming down her face. I want to celebrate her life's work, for which she was so very good at, and worked so very hard at, that she was given a medal by Queenie herself in 2010. And to any eye rollers, I'm not a royalist either, but even if you are, and likely many of you are,  The reason why my mum receiving an MBE matters, regardless of anyone's potential hatred of the monarchy, is because, as I said, a woman from a tiny island So tiny, in fact, that as a child, when I would show Trinidad on an atlas to friends, the dot to show where it was actually covered the whole island.

A child from that tiny island grew up to dedicating her life to helping children with behavioral and emotional challenges, predominantly living in poverty and part of abusive households in England. The impact that mum's work had was so enormous that my family  We're invited to watch her receive her medal at Buckingham Palace.

So the point being, that my mum's hard work taught me that no matter where you are from,  who you are in society, we can all make an enormous difference to improve the quality of life for many.  From fighting with head teachers to give kids, likely neurodivergent, a second or third chance at their school they'd been booted out of. 

By visiting their homes and getting them the appropriate clothes, shoes, books, and support that they desperately needed. And by being instrumental in the running of and teaching at a pupil referral unit in Norfolk to keep excluded children up to date with the curriculum and in education, while simultaneously fighting for schools to give them a shot despite their exclusion.

Without a doubt, not just this episode, but the But, in fact, the whole of ADHD AF is inspired by my mum,  who taught me  that by fighting for those who are struggling, misunderstood, and misunderstood. And that  is exactly what I'm doing here and what I'm doing with ADHD AF plus charity. So,  an enormous thank you, Mum, Jennifer, Jenny Sue,  from myself, all listeners and loved ones,  for shining your light so brightly to illuminate the paths of those suffering in the shadows. 

Being the voice of those that were rejected, and being hope for people so many in society would write off as no hopers.  This space, and all of the hope that has and continues to come from it.  is an enormous part, thanks to you. So thanks, Mum.  Some of you might remember, in the beginning of the Glimmers episode, released at Twixmas, just gone, I thanked the hospital and centre overseeing Mum's care. 

I have put care In inverted commas there. This is where it's for the best that I am trying very hard to very calmly read this.  Because without this script, this episode would be a very different lesson.  Though I'm very glad that I took the opportunity. To raise awareness about brain tumours.  That's actually not what mum had. 

Devastatingly,  we still don't know her cause of death.  And sadder still, my family might not know for a full year from now.  Though it's not appropriate to go into detail, I will say this.  The thanks I gave are retracted. That part of the recording deleted. And that's in part because I want to anonymise those clinics.

at this stage and also because I am not grateful. I want to say the opposite of thank you  and that is literally all I have the strength to say right now and that is partly due to the amount of strength myself and my family had to put into fighting for mum to get the appropriate care needed for two months straight, day and night, right up to her final moment. 

And I witnessed  and I'm haunted by those final moments.  I was there at the very end. And though I hope my presence brought mum comfort,  as a result, I'm also experiencing trauma or traumatic grief. Which, as I'll explore in this episode, is further complicated by ADHD symptoms. So I'm really in the thick of this  absolute horror and horribleness right now.

But despite that, I've chosen to do this episode. Mostly, as I said, because it might help a listener who has lost a loved one.  But also because throughout the whole of this ADHD AF Safari, there have been so many twists and turns. This last year in particular has been so incredibly difficult trying to carry on solo, trying to get the charity and the Emporium up and running, moving, and the rest.

But the one constant throughout all of it has been this podcast.  This is my norm.  I'm doing this episode on my own for fear that in interviewing anyone else, the impulsive emotional reactions to conversation don't feel like a safe or even useful thing to record or release. I sat and thought about my reasons not to do this episode. 

Number one is all of the people telling me to rest. Number two was be very careful what you say, hence the script. And number three was, is it appropriate?  And I realised, as many people have told me, there is no right or wrong way to grieve.  On top of that, I realised that though some might see this recording as too soon, the immediate aftershocks is what this podcast has been from day dot. 

I was just a few weeks into taking ADHD medication when this podcast started,  It has always been about feeling,  how it feels to discover the biggest plot twist of all time as an adult. To suddenly have the answers and how that impacts your relationships, your relationship with yourself and your place in the world. 

According to American author Victoria Alexander, there are three needs of the griever. To find the words for the lost.  To say the words aloud and to know that the words have been heard.  So here we are.  Getting a diagnosis later in life, like ADHD, has been likened to grief.  Many times on this podcast we've discussed Elizabeth Kubler Ross's grief cycle and how, unlike how that's presented, it isn't linear and feels more like a grief roller coaster.

Sadly, as has also been discussed many times on this podcast,  I'm no stranger to grief. So this is me white knuckle riding. The biggest grief rollercoaster of my already very griefy life. A person who, even on a good day, has extreme emotional dysregulation and justice sensitivity. And these are not good days. 

A person who thought they were already messed up until they became a member of the world's worst  The Dead Parent Club. God help me.  Anyway, I will stop lamenting and actually be useful.  Are you ready for the punchline of the cruelest joke that even a person with as twisted a sense of humour as I, can't find funny?

Wait for it. Many of the symptoms of grief and trauma read like the symptoms of ADHD. Honestly, you couldn't write this stuff. And as I said I witnessed what I hope,  please, to be the most traumatic event of my life. So, as that came first, let's start with trauma. So according to Very Well Mind, general symptoms unique to trauma include nightmares, flashbacks, and a sudden burst of anger.

Unfortunately, I do tick all of these boxes.  Night before last, I flew into an irrational fit of rage about something unrelated and not at all  the fitting of the stimuli to a Michael Douglas in Falling Down extent. I'm obviously trying to make light of it, but it was far from funny. It was actually terrifying.

I leapt out of my seat. And began punching myself in the face, which has only ever happened on one other occasion many years ago. I was so angry, and felt so wronged, and so frustrated, I genuinely wanted to rip my own skin off, to be honest. Because, as I've alluded to, it is not just the rage of trauma, or a wave of the anger stage of the grief rollercoaster. 

It is also that I feel Mum's death was potentially avoidable, or at the very least, her final weeks, days, and even minutes could have been a lot better for her, had we have been listened to. So on top of the harrowing imagery I am haunted by, the devastation of losing her and missing her for the rest of my life, I am also So very wronged. 

The justice sensitivity, which fueled the creation of ADHD AF, is now, and forevermore, triggered beyond comprehension.  To have fought so hard for justice, fairness, kindness, and to have not been heard.  For things to play out as they have. I will share two particular things respectfully, as in I won't share the images I'm haunted by out of respect for mum, but I will share these. 

Sometimes, in the middle of the night, the rage I feel towards the nurse who kept popping her head in and loudly saying with a massive grin, Anyone As if we were sat watching a spectator sport whilst my mother took her final breath. is the stuff of rage filled nightmares. It pales into insignificance to the conversation in which I pleaded in desperation with a specialist, again, inverted commas, How  many stages of actively dying does our mother have to present before you will take me seriously and help? 

To which he arrogantly and nonchalantly quipped, It is unfair and unreasonable of you to say she is actively dying. That's not what I see. We will see her in five weeks for her next scan.  She died just 16 hours later.  And as I said, neither waves of rage and despair come close to the images of her at the end, which send physical shocks.

Through my entire body.  And on that note,  I'll stick to the script and get back to Very Well Mind. Who say,  The overlapping symptoms of ADHD and trauma.  Our difficulty concentrating, distractibility, poor self esteem, disorganization,  inattention, difficulty with sleeping, working, schooling, etc. and restlessness.

So yes, like most listeners I'm sure, I already ticked all of those boxes before the most horrendous two months of my life. Grief can exacerbate ADHD symptoms, the physical symptoms commonly experienced with grief such as insomnia and eating difficulties for example. Well, getting sleep and eating well, they help with ADHD symptoms.

So, with both even further out of whack than normal, executive functioning is at an all time low. Whilst we've got all those extra hours to the day. for overthinking, rumination, rejection sensitive dysphoria, regret, self loathing, and the rest.  No two ADHDers are the same. So though we all share traits, how they impact the sufferers will change from person to person, combined with their co occurring conditions, and will even fluctuate throughout a person's lifetime.

I explored the impact of hormones on ADHD symptoms. In the episode with Dr. Negat Arif, who explained multi hormone sensitivity theory. So if you've not already heard that one or want to have a listen back, please do. Research suggests that neurodivergent people who particularly struggle with emotional regulation are more prone to depressive symptoms and anxiety during stressful events, such as losing a parent or loved one. 

According to the EDGE Foundation, Unpredictable emotions People with ADHD often feel emotions intensely, and they may react strongly in ways that may seem inappropriate. Some turn inward, while others will act out. It can be difficult for parents or spouses to walk the fine line between allowing healthy physical expression and indulging poor or hurtful behavior. 

Also misdirected hyper focus.  The ADHD phenomenon known as  hyperfocus, deep and intense concentration, can be problematic when sad emotions are at play. It's normal to express or feel sadness and anger, but be alert for that growing sense of depression and desperation. In acknowledging the turn quickly, we can try and redirect the emotions towards a more positive end before they spin out of control. 

Being isolated by loss.  Those with ADHD often experience a pronounced feeling of desolation with the loss of someone or something close to them. When a key figure leaves, dies, or falls ill, an important source of dependence and support is lost, which can add a sense of fear, loneliness, and hopelessness to the grief.

Now, that last point is the one that I am particularly aware of.  I don't feel like I am who I was before this happened. I therefore feel like I can't talk to people without telling them what happened. But then at the same time, I don't always feel like talking about what happened. So, that leaves me stuck.

In a way, I wonder If this is self sabotage with isolation as the end goal.  Another element of that isolation is that I think with all relationships being unique, and obviously we are all unique, then on some level all grief is also unique.  I really want to handle this monumental loss as well as I can.

And what I mean by that is that, like some, though not all, ADHDers, I am really bloody good in a crisis. And let me be sure to debunk a stereotype here. That  is not an ADHD trait. Not all of us are, but I am, and unfortunately, I've been in a few. And what happens is, historically, I've carried on ever so strong and resilient, and then down the line, it hits me.

And the consequences of that happening again, I just can't afford.  The position that I'm in as founder of ADHD AF Plus charity, and the leader of the Leprechaun Army, I need to be as well as I can be. There are people relying on me, and I don't want to further gatekeep support from those that have already had their support gatekept. 

Another episode I wanted to reference was the full length interview with neuroqueer author C. J. DeBara.  They, like me, are the busy type of ADHD. The stay awake club with many plates spinning at all times. Again, I just want to point out that not all ADHDers are like this. Some are, in the can't stay awake club, for example.

And some Like I was prior to beginning ADHD medication, which we all know is a massive privilege, are stuck in paralysis, unable to even make one plate spin. I spent years like that.  Whatever ADHD looks like for you, you are not alone.  But as CJ rightly pointed out, it's all very well living a life constantly juggling multiple balls if that's what best supports how your unique brain operates. 

That is, until something terrible happens.  CJ also lost their mum a few months prior to recording that interview. They advised, Operating at full capacity means, when life drops a lead weight from the sky on your head, as heavy as losing a parent or loved one, you're in trouble.  Because you don't have the capacity to keep those balls in the air. 

There's no capacity left if you're working at full capacity.  This point.  And it's all the more interesting and I hope useful to somebody out there to know  that when I interviewed CJ, at no point whatsoever, did it occur to me that my rush to get things done, as in get the charity up and running, for example, was so that my friend who was diagnosed with terminal cancer in 2021, would still be with us to see the charity up and running.

And I can't tell you how grateful I am that she is still with us. Go on, go. But I'm pointing out that it never once occurred to me that it would in fact be my mother that would pass.  Before the first in person peer support group for ADHD AF plus charity would take place.  Which is  mad, really.  I've said in the past that my neurodivergent brain never thought that school would end. 

I really didn't grasp for some reason that I wouldn't always be in high school. Which sounds ridiculous, but I really didn't. That the things that were being taught to me were to arm me for my future as an adult.  School just stretched out in front of me as my reality forever.  And, and it was the same with mum. 

Logically, I knew she would have turned 78 this year. But until the 30th of January. I have never lived a day that my mum didn't also exist on this planet.  I literally know no world without her.  That now, or not now, thinking that is so commonly shared amongst the neurodivergent community. It really, um,  yeah, it blinded me to the obvious.

On top of this lack of logic or future thinking, this now or not now thinking that so many of us experience makes it hard to perceive reality full stop, to process loss. I personally feel that the denial stage of grief will be the one that lingers the longest.  By far, my saddest moments are when I say out loud, I'm sorry. 

I really wish she wasn't gone.  I think a final point I want to make is that of object impermanence. Which, even as number one cheerleader for shame eradication, with the most ADHD Things episodes encouraging us to all drop that shame, I am absolutely shrouded in shame. To equate object impermanence to people.

Especially my own mother.  So many of us genuinely forget that our nearest and dearest Exist. If we don't see or hear from them for a while, obviously not forever,  but at least temporarily and often paired with that time blindness, we can forget how long it is been since we've seen or spoken to someone.

No matter if that person means that absolute world to us, just like my mum. So the cruelest part in my mind is how many times people who experienced A DHD in a similar way to me.  have to keep reliving the loss, forgetting  or being unable to process that they will never see or speak to their loved one ever again.

That feels particularly cruel. So  with grief, trauma and loss and ADHD and all the bastard side dishes. What can we do to best support ourselves in times as awful as these?  I'm going to go back to the Edge Foundation, who say Anne Keaton in an article of Impact ADHD offers these three steps. for dealing with grief when you have ADHD. 

Step 1. Acknowledge your feelings of grief. Conventional wisdom such as don't feel bad, give it time, and be strong does not resolve grief. Start by recognising when you are grieving.  Step 2. Be willing to ask for help. You have to be responsible for yourself, your choices, and your reactions. But that doesn't mean you have to shoulder the work by yourself. 

Dealing with grief begins with getting support from individuals or groups.  Step 3.  End the isolation. Reach out to talk to your family if you can. A counsellor or coach, or someone who you trust to listen. And, and help you take a proactive approach to overcoming your grief. There are some coaches and therapists who specialize in issues like ADHD.

And grief recovery specialists are trained to teach you the step by step method for moving beyond your grief. A DHD can amplify the negative emotions around grief and loss. But if you seek help and allow yourself to go through the grieving process, you can recover, rebuild yourself, and become stronger. 

So they say,  so, as I said, I want to deal with the greatest loss and trauma of my life as healthily as I can to best support the future and all things A-D-H-D-A-F.  So, I went online to find the best books, podcasts, et cetera, about grief and was alarmed to discover that most of it did not convey my experience.

That was further isolating for a start.  But alongside realizing that is because on top of being neurodivergent, this isn't standard grief. It's traumatic grief. My mum didn't want a funeral. We will be having a celebration of her life in the summer instead. So at a time when most would be preparing for a funeral, Big and I have come out to a friend's place in Ibiza to try and rest and recover.

And having spent most of my adult life living out here, there are moments when she could just be at home, like normal. My mum wasn't my best friend, like some daughters and mums, and I didn't speak to her every day. And very regrettably now, even every week.  So, she could still be here  and truthfully, sometimes I allow myself to rest in that feeling and that it was all just an awful dream and not the nightmare we are actually living through. 

I want to say an absolutely enormous thank you to the ADHD AF online peer support community who have helped me every single day of the worst time of my life.  for giving advice and validation through sharing their similar experiences. And I just want to note that relating, in case you didn't know this, it is a common ADHD trait.

And whether that is something proven or not, I have been working very closely and speaking to so many people in this community for coming up to three years now. So, at least I can confidently say, it's one I witness multiple times a day, even if it isn't recognised as an ADHD trait. What we do is, we share a similar experience that we have had. 

To connect with that person who is sharing theirs on a deep level. To demonstrate our understanding. It's not talking about yourself, or making it about you, or any of those other awful phrases so many of us have been shamed for. It's literally saying, I feel it.  And I have to note, as I am here in the beefs, I've always said, while squishing through the crowds, of Space and DC10 clubs here on the island.

With my Spanglish, I would say the Spanish phrase Lo siento. Which I just meant to say, Sorry. Sorry for standing on your foot. Sorry for, for getting too close to you. And it, it does mean sorry. But it's literal translation is, I feel it.  So, when a neurodivergent person tells you a story similar to one you've just shared, That's literally what they're telling you.

Lo siento.  Anyway, I was thinking, and to think this is the written script, can you actually imagine the rambles if I'd done my usual stream of chaotic consciousness?  Thank you to the community for keeping me just about together. And I have to say a particular thank you to Lorie for reminding me of my fighting spirit to keep pushing to be heard and fighting for help for mum whilst being ignored and dismissed.

Her words that she shared with me on Discord were  Be your mother's daughter.  And that phrase helped me more than I can even put into words at a moment that I, my family, and most importantly, my mother, desperately needed help. So thank you doesn't cut it, Laurie, but it will have to suffice, as the Spanish for thank you is gracias, and that is nowhere near either. 

Thank you to the community body doubling facilitators for keeping the daily Zoom sessions running. The discord moderators for looking after everyone on there. And an enormous thank you to Steph for still getting ADHD AF Emporium launched on the date as planned despite how utterly useless and or mad I've been. 

Thank you to the board of trustees for ADHD AF plus charity for keeping going behind the scenes. We have enormous news which I will share in the next episode. My god, we are finally there.  Thank you to the community members who created a fundraiser for ADHD AF Plus in honour of Mum. I'm so incredibly moved by that.

I will share a link in the show notes if anyone would like to donate.  I cannot say thank you enough to family and friends for all of their love and support, especially to Big, my husband, who has been by my side for all of it, and also at Mum's bedside too when she passed. But the biggest thanks  has to go to my mum  for being such kind and inspirational person. 

Grief is the price we pay for loving. So I'm grateful for this grief because it shows how lucky I was to have lost someone so special. 

But the truth is,  she does live on,  she lives on  in the memories of those who loved her, the countless lives her work impacted. And within that, I count every single listener of this podcast, and I cannot say thank you enough for listening to this episode,  because in doing so, you've helped meet the needs of this griever,  to find the words for the lost. 

To say the words aloud and to know that those words have been heard.  And much like Lorie's powerful words coming at the perfect moment, so too did the ones I'm about to share with you. On arrival in Ibiza, we sat shell shocked in disbelief on the balcony of my friend's apartment.  The sun was setting and I was howling, crying and suddenly a beautiful bouquet of flowers arrived from Ashley and Sam, who are both trustees of the charity. 

The card read,  Life is tough, my darling. But so are you.  And it feels particularly poignant because mum always called me my darling.  So, Leopard Print Army,  though at times our roars may be more like howls of despair,  I say this to you all and in honour of mum.  Life is tough, my darlings, but so are we.