Author: Maria Thomas

Who am I and where/who is my tribe?

/ Maria Thomas / Leave a comment

Written 10.9.2017 published 14.12.2025

Once a year I hope to read a good book, interesting maybe, a page turner if possible but when I read one that profoundly moves me then that’s when I get really excited and perplexed all at the same time. I recently read ‘Tribe’ by Sebastian Junger but prior to this I had listened to a number of podcasts by Daniel Strauss, Raspberry Ape Episode 27 that had talked about ‘Tribe”. I find myself listening to more podcasts this year mainly hosted by men and conversations on BJJ, MMA, the mindset of celebrities, scientific research on reishi, lion’s mane, gut ad more; I was intrigued to hear continual conversations about where we belong. I guess you take it for granted you know where you’re from, familial life, heritage, ethinicity. I read a quote today that said “Every next level of your life will demand a different you”, now that is true. I am not the same person I was 3 years ago, even 10 years ago but is that because my “tribe” changes and therefore I change? Or is it because I change depending on who I’m with, partner, circumstances, various friends, family, work?

I looked up the word “Tribe” just to truly understand in my mind what this word actually means. Independently, I would say it was a “label” that defines a group of people who travel, live, grow up together, share experiences and are nomads. There is something historical about the word as if it should be extinct and we refer to it in the history books.  But I know how modern society loves to label so the label has stuck to differentiate us rather than positively define us.

The general meaning I found online from a few dictionaries was “a social division in a traditional society consisting of families or communities…” Wikipedia described a tribe as “dependent on their land for their livelihood, who are largely self-sufficient, and not integrated into the national society”. (Funny, I thought a tribe would be it’s own society?).

Does the word tribe make us ask the existential question, “who am I if I don’t have a tribe and where do I fit in if at all?” The book certainly did for me, Sebastian discusses being among soldiers of war and that feeling of safety, everyone rallying around you, this stranger will die for me and will die to protect me. The only time I sense this is with “family”. I have always believed this is how family feel about one another, but being an adult I’m not so sure if this is true? The microcosm is never a reflection of the macrocosm and that’s when the struggle begins.

So, thinking back on a group that is self-suffient, dependent on the land and living by your values within a group that has chosen it and decided to live their life by it sounds great, right? Then why can’t we be happy without the excesses in our lives, without the luxuries, without the choices. We have accepted capitalism and consumerism to become a way of life, a way of defining ourselves over others, a way of measuring our successes and failures. Who says it’s a failure to oppose that lifestyle and choose a different lifestyle. We analyse celebrity exposure as a way of seeing vast amounts of wealth that cannot equate to personal happiness or satisfaction. And I asked myself to answer some of these questions, I need to ask in all of this who is my tribe? Because the question came from a podcast discussing BJJ and the bond you build on the mats, I looked ay my gym buddy tribes. I have a boxing tribe, a Ladies that Lift tribe, friends, family all that I would call tribes. The problem is I felt confused, l really couldn’t tell you where I am from, a part of my ancestral tribe it unknown to me. I know I have Egyptian and Mauritian blood in me, but could I tell you about my grandparents or there parents, no.

My tribe are what close family I have left and that consists of seven people, how do I define myself in the world with such a small number? do I need to? I do define myself by my work, my friends, the people I socialise with, my partner because they have contributed to who I am. And who I am is no longer definable by heritage, generations of the past, environmental, sociological or anthropological past but who I am in the here and now. But my DNA can tell me who I was related to, my gene cells will define my predictive behaviour based on past generations, my medical history can be deduced from my ancestors but in the 21st Century I do not think of who I am defined by history but by my tribe and my tribe changes with time.

Today I ask again who am I and who, where are my tribe? My Dad shell shocked me last year with telling me he was married and still is and that I have a half brother. Today I met my brother and questioned my existence as to who am I? My identity, my name, being female, my role in the family, was I grateful I got to spend more years with my strict, religious, over protective father or now knowing his fear of being an illegal immigrant for so long explains why he was such a controlling man. I never knew he was a muslim and I never knew he was married. In fact, there’s a lot I don’t know about him but maybe that is “generational thing”. So many secrets, so many lies, one wishes to forget so you do now have to confirm or affirm which is which especially if you do not remember.

What moved me the most in ‘Tribe’ was the loss soldiers felt when returning to society. How do we as a Society comprehend what those who train in the skills required to save lives and develop whatever it takes physically, mentally, visually and psychologically to deal with trauma; I cannot fathom it. I cannot imagine it, I am in awe of it. I find writing incredibly cathartic and everyone has a story to tell. I am sure my history would be a 12 boxset season on Netflix. What also moved me, was the question “what am I doing to make a difference in the world?”. Am I procrastinating and over thinking, should I be podcasting, questioning, discussing global issues and how we could change them. Who am I that someone will listen, do I know enough, will I sound stupid? But that’s insecurity talking and that is social conditioning from fear. If we could identify everything single habit, conditioning, constructs, victorian attitudes, values and listen to an honesty from within, this world would be such a different place.

Post Grief

/ Maria Thomas / Leave a comment
Maria - daughter, brown woman with blonde highlights in hair leaning her head on dad's right shoulder. Dad is a brown man in his 80s with a cream shirt on with brown collars.

Autumn has truly arrived with nature transitioning from light to dark, the warm breath of the breeze on our skins, the beautiful red and yellow leaves strewn on the pavements reminding me of the cycle of decay and death. I am reminded of this time last year and not knowing how long I would have with dad. I remember bringing a red leaf and giving it to him, an internal sign, a moment of how I would not see him through another winter.
This pre-winter grief has lasted for years in different stages, and over seasons and cycles. My heart is heavy with loss and I know I am not the only person who is grieving and has lost this year. So many friends have lost a loved one, so many have reached out to empathise, to remember and for those who are going through it anew. I am lost for words. They are recycled and I wish I could offer new ones.
I am still going through the following and I know its because, I could not process these at the time.

Guilt

No one tells you that once all the services that were in place for your dad stops, there is no service that continues for you bar one, therapy which I pay for. Whom do you turn to when society and its structures are set up for you to deal with grief in two weeks when I have been dealing with it for eight years.
I rang Admiral Nurses after dad died to say thank you, and had a lovely conversation on the phone to a nurse but I felt guilty that I was taking up someone else’s space.
Guilt never ends, it seeps through at different moments as the memories come and go over time. All the arguments I ever had, pre and post knowing the diagnosis of dementia. All the times I never stayed with dad, as I worked long hours, or made up for working late due to being in hospital, the guilt of not working enough, of not being there for others, of not being there for myself or my husband. Guilt of what I should have done, or should have said in defence, of not being strong enough or standing up for myself enough.
Guilt is an ugly voice, it’s the internal voice of shame, it’s sharp edges prods and pokes you into self-loathing and insecurity. Guilt stops you from sleeping at night, it is a constant replay over moments, and scenarios, and ‘what ifs’. Where do I feel it, in my stomach, chocking my throat, destabilising my senses and critically analysing my words. I am shockingly drained and tired from the constant voices of guilt holding my ever faithful friend – Shame.

Shame

The voice of others or myself – although this is unique to everyone, I am sure. Shame talks to you about duty, dutiful daughter, you are the carer, what you should do because you are his and now it’s your time to give back. Shame comes from the conversations, both from people who know you and who don’t know you, from family, friends and from services. No one really believes they are shaming you because shame shows up as advice, as words of consolation and experience. I put shame in a box, i compartmentalised it until I was ready to face it, and yes that small ‘i’ is because i feel small.
Where do I feel shame in my body? In my shoulders, neck, lower back. It’s the weight I carry, not only of myself but of others and their expectations of me, of what is expected as a daughter as a carer. I never really understood what care meant in relation to gender and I now look back and realise how society’s expectations on me drained me of me.
Shame made me angry, it fires up the rage in me, it made me tough and resilient, distant, cold, numb when I shouldn’t, couldn’t, want to be those parts of me that rob me of my humanity, my joy. It wasn’t until a ‘dementia navigator’ asked me how I was and vulnerability showed itself. I cried, no I sobbed. No one had asked me how i was doing. I hadn’t asked me how i was doing in a long time, because gradually there was no i. Shame and guilt make you feel selfish for even thinking about you. It uncovers vulnerability.
My body has never been the same these last eight years, it’s older, slower, bigger, bulgier and I look different. My body, my face has reflected the tiredness, the weight, the heaviness of shame. Shame has shaped, manipulated, whispered dark thoughts in my soul, which has echoed through my body. If I could give my therapist an award, I would. The space for my shame to sit in, is there, contemplative and contained.

Vulnerability

Vulnerability has shaken my core but I had to control being vulnerable outside, to the world of healthcare professionals, whilst internally or at home I was and still am a vulnerable mess. I had wrapped vulnerability in cast iron, seriousness, arming myself with knowledge and questions, and protecting my dad with a fierceness that I hadn’t with my mum. How could I be vulnerable in any situation with social services, GPs, oncologists, hospitals, NHS services – all of the appointments and conversations were about knowing about dad’s health. I had to be strong, be in control, look the part of the dutiful daughter, not the angry, brown woman raging inside at losing my dad. Having to deal with all of the changes, the subtle ones and the slap you in the face obvious ones. I had to stay calm and bite my tongue at every turn when I was faced with ego, condescending tones, when services were not given freely to me, when I was made to ask and ask again. When I had to tell a number of different doctors, nurses what the situation was over and over, pleading for care to be in place, a service to be given. Vulnerability has made me sensitive. Sensitive to energy around me, peoples energy/vibe. Where do I feel it in my body, in my gut. Vulnerability has stoked the fire in me, anger and rage.

Rage and pain

This last year I have raged inside, my patience is a thin veil of ‘fuck off and leave me alone’ – alone is how I feel. Is it a feeling? Yes, but its more than that, it’s physical. It’s – I want to punch and kick a bag until I drop, it’s rain on my face along with my tears, it’s being on the bus and passing the care home with tears streaming down my face. It’s sitting alone in my living room and looking at the images of my dad and mum and knowing I can no longer call them or see them or go round to theirs for dinner. Rage is hot, cold, light, dark, being alone or surrounded by people. It is everything all at once. It is the eight months of trying to get home care from social services, it’s the carers who didn’t think outside the box, it’s the doctors who made the decision to prescribe an anti-psychotic instead of calling me to be with dad, it’s the matron who won’t listen, who dismisses and you are silenced and waves you away. It’s the doctors who won’t take your side when they see injustice and let you stand alone, it’s the doctor who tells you there’s nothing more they can do and leaves you with no hope. It’s the doctor who has made up their mind about what treatment will start without consultation and questions your research. It’s the services that ask why can’t you bring your dad to this activity when they already know you work full-time and offer no other solutions. It’s the people around who bring sweet food knowing his mood will be accelerated but they don’t have to deal with the aftermath of shouting, throwing food around and horrible words. It’s the punchbag you have had to be and accept because in not doing so may have been detrimental to dad. It is the smile on my face, the words when I write, the vows he didn’t hear, the wedding he didn’t see. I feel rage and hurt all at once and sits in the centre of my chest, heavy and raw every day.
It is the vitriol I feel toward me and it’s hard to talk about it, it’s hard to define it sometimes, it’s hard not to quietly walk away from everything and everyone. Even the closest do not understand because trauma is happening everywhere, to close to home, how much capacity do we have for ourselves and each other? Very little, if any at all… and on some days when it’s really quiet, I can hear it and I sit with it, hope.

Hope


Hope offers me a new life, a new vision, a different energy. It offers me a gratitude for a new life and choices that are mine to make me happy. Hope for the kindness to myself. Can I see the kindness of hope, the small steps that allow me to lift myself out of grief? Can the emptiness be filled? How can I ever be happy knowing that my parents are no longer there to see and share in my joy, in my journey of life. Was I that naive to think that they would live forever? No, but I hoped they would live to see more. I miss holding my dad’s hand and it is so raw to think today will be one year since we said goodbye. Hope is my siblings, my niece and the next generation. Is hope love? In many ways, yes and in some ways no. I hope that I will love me full and unconditionally and that might heal the memories of the past. Hope is my guide today and always.

Tides of time – heal me

Seek not my body in the past moments of joy and celebrations
Seek my soul’s divine path of forgiveness and knowing
Knowledge has held my hand and humanity has been key to its centre
Feel the words of ownership whip itself on my skin, sowing the seeds
of trauma

Patient centred care – what does that mean? Listening, giving space
To a voice otherwise marginalised, labelled, troublemaker, difficult
Advocacy for men, but what about support for women?
Regimented rules dictate a system so old, so cold sometimes, so distant
Distrusting state and healthcare that cares not for some and only others

Others that are not ‘othered’ but those elite, wealthier clients,
Friends, close knit communities, side stepping those who need care,
depend on care, medicine, welfare of those systems apparently,
in place to care, to share, to save lives and make people better.

In sickness and health do state do us part.

Grief – What does it look like?

/ Maria Thomas / Leave a comment

It’s four weeks today since dad left us and how does the world look? Lonely, hollow, in a daze. People are talking and I’ve zoned out, or I’m exhausted or I’ve forgotten what they have said. Currently, silence is my friend. Coming home after work has been difficult as some days I would usually go straight to see dad. I realise how much I am holding in and I cry when I get home or on the way home.

It’s hard to be honest at work as to why you want to leave work, to go and speak to your therapist but there’s no way around explaining why you need the time, it isn’t a given. Equally I am grateful that work understand and have given me the time off. 

I’m starting to feel anger towards all sorts of things, little triggers. I feel irritated by the smallest things and at the same time I know they are small inconsequential moments. I am fighting the urge to allow myself to become irritated by people and moments and I know this is not me. I am justifying, reflecting within myself, having conversations over again within to make sure what I am thinking is actually from a genuine place or from somewhere else.

I told my therapist recently I understand the light and the dark can exist all at once and that’s okay. Probably the biggest take home from her since I started having therapy. The light and the dark feels deeply vast and expanse. Although the darkness is more attractive and can feel comfortable as I have been there growing up and through moments of my life.

I am getting married next year and I had two scenarios in my head, either see my dad before I got married or see him the day before.  I honestly thought he would be with me beyond 90 year which he would have been in April. How could I have been in denial for months. I weep and sigh, I thought I had more time. In reality I had the best of times I could have had under the circumstances. 

One of my closest friends spoke to me the other day, she was the one person who checked in on my mum when she was admitted to hospital on various occasions and when she had lung cancer. She said “you have all this time to adjust to, you spent years looking after your dad”. I don’t think that has completely sunk in yet.

I think of all the things my parents didn’t get a chance to see but I remember all the things they experienced with me during their lifetime. There was something about wanting to be the first person to obtain a degree, the first person to get married in a western way. I wanted to make my parents proud and I know when growing up, nothing felt like it was good enough for my dad. As an adult and a reflective person, I know my parents came from their own lack of “enoughness” from their own parents and their own belief of what they hoped to achieve in life. I was a “people pleaser” for my parents as I wanted them to be pleased and happy with my achievements. There were many rebellious moments where I couldn’t give a f@@k and my parents didn’t speak to me. Ahh those teenage years but you have to go through them in order to understand or try to.

Poem
Hold my hand and tell me that one day I will see you again
Not on the shores of the sea, in the cold and grey
Not in the darkness and seeking the light
But on a bench where we sat talking, laughing, walking together

We listened to the birds, we watch the squirrels ferrying for nuts, the sky held a calm
We smelled the rosemary and the mint together, we held the apples from the garden
We sat on the bench and enjoyed summer days
I miss the stillness, to be or not to be moments, the smiles, the pain, the loss

I hear your voice still, I hear your laughter in my heart, I see your struggles
They were not nice, they were angry, fearful, lost in a world of non-sense
A world where we know this sense, this hollowness, this part of you or me
That dissolves into nothingness

The tension in my stomach has not left, the silence of my phone disturbs me
I miss your voice calling me, I know you’re with me. 
Dad – I cannot do this again, the caring, the arguing, the understanding, the loss 
at every stage. I cannot find the patience, the empathy, the many stages, the hurt,
the grief.

I ache, I hurt.

In Search of Myself

/ Maria Thomas / Leave a comment

For a long time I’ve been trying to figure out how to stay in touch with my intuition and guidance system. I feel blessed to meet people who want to talk about their own spirituality and will share what gifts they hold. Sometimes, I feel so vulnerable and such an open book even if I don’t share much. I can feel that I am being read, or at least I feel like I am. Notice the difference between the feeling of being “read” and the feeling of being “judged”. I used to feel judged but that was/is my own trigger that has been brought to the forefront of my own fears.

I am also aware there are times when I feel in sync with the universe and other times I allow myself to be consumed by the noise and be distracted by things that should not be within my framework of goals. And what exactly is my framework of goals? I still don’t know. I asked myself the other day “when did I last feel alive and one with the universe?”. It was a looooonnng time ago. There are always moments that I feel in sync but now they feel like moments of continual momentum. Not in the motion/active way but a spiritual inertia.

I am finding comfort in being able to speak about my spiritual, intuitive side as more people are discussing their own. I am always in awe of the gifts that people have to hear, feel and see clearly spirit or happenings. And living in a physical world does carry baggage of that limited, trapped mindset and how everything needs to be scientifically proved or have validity in some way. Not everything has to be scientifically proved, does it? There are many that believe in a god, can we prove this existence scientifically or is this faith of something more?

I am a curious being and like to question everything within reason, not necessarily for explanations but for perspectives. My mum delved into the world of faith-healing, fortune-telling, she read cards, palms and it fascinated me but also scared me.

At present I seeking more of an understanding of how I work, my own blocks; and to allow life to unfold by deeply trusting myself and my guidance system. “Guidance system” – what does this mean? An inner voice, a sense of timing, energy and space. Also, trusting the universe has my back. Does this sound all woo woo, maybe it is but what if it isn’t. Why do people say things like “It felt like someone walked over my grave?” or “I feel like I’m having de ja vu”.
I am so grateful for many things and at this particular crunch point it is helping me with utter grief that I feel daily.

.

My dad has lived with dementia and prostate cancer for the last 7-8 years and it has been the most difficult, traumatic time of my life. I can’t imagine what he is going through, how the neural pathways are disconnecting his memories, and closing off parts of who he was as a fully cognitive man. Am I denying death or am I seeking answers that will make it more acceptable?

I am conflicted, I am overwhelmed, I am cherishing all the moments I speak with him, hold his hand, hug him, see him smile because there are too many times the anger settles in. I feel he is in pain, physically, he is also probably angry to be losing his identity, basic functions of the things he used to know and do so well, so independently. He is losing himself in the physical world. How and why does this happen?

One of the things I recently learned about me, was that I was playing the victim, well at least saying something in a way to evoke sympathy and to make myself feel better, to support the fact that “I’m doing a good job as a dutiful daughter” by caring for him. I know that I have lived with a lot of guilt, shame, even hatred toward myself for not being a better daughter or a better person, for arguing with him before and after all of his diagnoses, for feeling angry for many unanswered questions, that his past was hidden from me, for not being able to say what I wanted to say or ask.

Along this journey for the last 8 years, I have learned to love myself more, take credit for fighting for dad and making sure he has a good quality of life, to uphold his dignity when needed and know that I made a choice to be there. No sad stories anymore but acknowledge the trying times, the hard times and no capacity times.

I hold myself through this time. I love myself along this path. I shine through even though another piece of me is dying, his memories are my memories. His loss is my loss. This last part of the journey has no words to describe. I’m still here. I’m making the best of the life I have.

I wrote the above during the week of 21st October 2024, I am now at 15 December 2024.

In the middle of all of this I joined an online event called ‘Alive’ by my friend Lois Tucker. She has since run a course called ‘Clarity’ which I knew I had to join as I was in the middle of grief.

My dad passed away on 26 November 2024, my sister and I were with him to see him leave peacefully. I was glad to be present and say goodbye in-person but it hurts and is one of the most difficult experiences to go through. I am now parentless, an “orphan” as a few described. Dad was buried on 28 November in accordance with his Muslim faith.

How am I? I’m not sure? I feel in limbo, I feel like I’ve grieved a lot already and I feel that I haven’t. I feel alright, I feel at peace knowing dad is at peace. I feel irritated, angry on occasions. I’m exhausted. I’ve gone back to work and welcome the distraction but could do with time off. I wish you could take paid leave for a month or so like maternity leave. My body has begun to untie itself and I can feel the aches and pains, I hadn’t before. I feel a slow decompression.

Everything has felt so surreal, in some ways I want to close my eyes and awake seeing my parents; having the chance to hug them again and tell them I love them. The transition from physical world to spiritual world is tough. I wanna hold my dad’s hand and tell him I love him and give him a cuddle. I want to feel the cool skin of my mum’s arm and tell her I love her and hold her close.

Some of my memories torture me like a time I came straight from work to the care home to see my dad before he had got into bed. I arrive just before 6pm and he called my name, Mya. Mya has always been mum and dad’s nickname for me, dad had the biggest smile on his face, I’d open the curtains and he was so happy to see me. We were talking away for the hour I was there and normally I take a photo of dad and me when I can, when he allows, allowed me to. I keep telling myself I should have captured that moment.
When I told my partner this recently, he said “if I had then I wouldn’t have been present to enjoy the moment in the way that I did”. He’s right. I had many moments with dad and feel so blessed I was able to.

2023 – Where am I?

/ Maria Thomas / Leave a comment

Mid-September 2023
This past week has been a rollercoaster ride of a journey. I cannot find the words. I am lost in turmoil, trauma, realisations and a grief that sits with me every day.
I am the child who has become the parent, I am the sole child, the youngest child who has sole responsibility. I am unique in this life with a lens of how I see and view dementia effecting my Dad. I don’t know how I feel anymore or what I feel.
Sometimes, I listen to others to remind myself what it is to feel empathy, what their journey is because in so many ways I feel like I have to numb the hurt to get through what is happening right in front of me.
I am losing my Dad, and I want to cry uncontrollably, I want to scream at the world for the way his mind is being played with, manipulated in past and present. Pensive with trauma, and observing the things he can remember, those things that are his, his space, his environment, his home.
I no longer feel the duties of a daughter but the sadness of loss. I feel like I am losing another part of myself, the loss of me whilst losing him and nothing can take away that feeling.

I have had so many kind messages during this time, but I cannot speak. I cannot answer. My capacity has been reached. How do I explain this without explaining. How can I be me and not me right now? How can I be happy when I feel alone?

My therapist and I have talked about how the light and the dark exists at the same time, and it’s okay to feel the conflict of both. It is normal. I, sometimes feel like “I am a good person” but equally I want to tell some people to f**k off. Not friends or family but people who lack that empathy, who don’t understand what it’s like to have dementia. Who think they know but haven’t lived with it, never seen it up close, know it personally. Is it a generational mentality? Is it a lack of empathy? Is it a lack of care and compassion?

I have seen trauma, I have seen the darkness this week and not my own. I don’t know how I have become resilient, may be I had the armour growing up to protect myself but equally I feel exhausted by everything, everywhere, all at once. I am going to make one of the hardest choices of my life and it feels shit, selfish but necessary. My heart is on the floor and I am trying to scrap pieces of it up to make the whole again. I feel like every step is a fight, every service that I am dealing with for my Dad is broken, disconnected, refusing to take responsibility, passing it over to someone else. These are the effects of a government who have sold off and privatised our NHS.
Dementia accelerated is angry, cold, disengaged, no reasoning, childish, teenager rants, emotionless, full of expletives and confrontational. At least the strand that I have to deal with, what this week has been like.

Am I coping? I think so?

Have I done anything for me? Eat chocolate. No exercise, which helps me. No work, as it has been a wave that I have had to ride.
Am I grateful? Yes, for an understanding work place and words of support and advice from doctors I know personally? For my partner. For the friends who have reached out.
I remind myself I’m a step-mum. I remind myself I act. I am worthy, I am enough. I remind myself that I am doing my best and that is all I can do. Does it make me stronger? I don’t know.

For the first time in my life since Mum died, I have not been able to focus on anything else but Dad. For the first time I noticed the triggers from possible past traumas and they sat with me, they sit with me. I have to stop myself from feeling guilty because that part of me says “could I have done more?” and I know there’s no more I could give or do. And when you think no more could happen, more comes along to test you.

December 2023
Christmas is over and a new year is almost here. I think of the journey these past three months, almost a quarter of a year and I have finally had to make a decision I thought I wouldn’t have to make. Moving Dad into a home. His care needs are greater, my time with him has been demanded and the last hospital visit still has me reeling with anger and dismay. A different hospital encountered with a different response to dementia and trauma. I am still fighting the shock that administering an anti-psychotic to a man with dementia whatever the dosage, and not communicating with the NOK was a priority than reading the patient’s history or records.

I draw closer to another year without Mum and wonder how have I become a parent to my parent? Mixed emotions have consumed me since April, no time to breathe, to absorb, to process moment to moment. How to make time for me, where do I find the time? Having my coffee in the morning, brushing my teeth, going to the toilet??? I am grateful for counselling, I am grateful for trying to put boundaries in place and acknowledging how much energy I have for myself and others? Overwhelm, over-thinking- over wrought with 2023. I keep telling myself it’s ok, everything is okay but am I okay?

I notice the tiredness much more, I notice the weight gain much more, I have stopped regular gym going. I understand that one doesn’t let oneself go, you prioritise where the energy has to go, where the focus needs to be. Sometimes it is a waiting game, sometimes you pause and it feels like weeks and months. I tell myself it’s okay, but is it? I have high standards but when you are on the edge of being an empty vessel that cannot refill or refuel what do you do? You keep going because there is no choice.
I cannot bear to listen to the words of unwanted advice or comfort. I am fed up. I am at my limit. I don’t want to hear anything that anyone has to say unless I ask. I just want a hug, I want to feel, I am numb with pain with hurt with anger. I am numbing myself, my soul into the unfeeling just to cope. I have the barriers of my childhood youth raised high protecting me from my emotions, protecting me from the fuckwits. I feel the negativity of youth which I attempting to embrace rather than despise and coax the inner child into warms words and arms of embrace. “Everything will be okay”. I wonder which side of the family the air of “control” came from. I know where and unpicking and unpacking is effin hard.

I want to lay on the cold grass and sink into the earth. I want to drink the loveliest of red wines and not feel woozy or slightly drunk. I want, I want, I want. Where is the gratitude, I hear myself ask? Where is the positive, upbeat Maria who I use to know? Lost in a lonely shell especially this time of year. I am reminded how lonely I feel, and do we choose this loneliness or is it just so? Am I depressed or am I mourning the loss in its everyday form reminding me I will have to empty another home because this is life. I end 2023 exhausted, internally broken and full of anxiety and self-doubt but I enter 2024 with hope. Hope, that life will be different and I will find who I am, once again in the world without the guilt of remorse.

One of my affirmations is “I intend to have fun”…sigh…one day, right.

Blessings for an amazing 2024 for all of us. Thank you if you made it thus far.

Maybe Tomorrow

/ Maria Thomas / Leave a comment

At this time of year, I am usually torn as I love the spirit of Christmas but equally feel the loss of my Mum. Knowing another year goes by where she will not be here share in the famliy get-togethers, meet her grandchild, see the extended family of those who are new in our lives.

I know this is all part of life and yet, my heart sinks and I want to hide away from seeing anyone. Smiling and being joyful takes up energy and I feel like I’m guilty of so many things like lying to others about how I really am inside or wondering when someone will ask me, “How am I doing?”. It’s so far and few between that I hear that question, that when I do it hits me hard and I well-up and still feel like I’m lying because I can’t really say, there are so many days where I feel empty, numb, where I don’t feel real or me anymore.

I’m sure the part of what I considered to be “love” died that day and what I feel now is not solid but fluid and transient. I’ve heard about so many losses recently car accidents, health related, suicide. And it hurts, I know it’s a part of life, it doesn’t make it easier to absorb. It still has a ripple affect.

I’m also dealing with a parent who has dementia and a shift in the condition. It’s so hard to hear practial words “this is life”, when all I want is someone to say “it’s okay, I’m here for you” and give me a hug.

Of course therapy helps, and a stranger who offers empathy is better than no one reading in between the lines. I guess that’s why a lot of people pay for their needs to be met on a basic level because they can’t get it on an every day level. Grand statement I know.

I met Brian, one of my dad’s neighbour’s over a year ago, an Irish school teacher with a great sense of humour. I was working as a runner on ‘Pistol’ which was shooting on the estate and the cameras were about to roll, he’d walked to his flat in his suit, and then came out 10 minutes later to have a cigarette. I ask him if he wouldn’t mind stepping out of view for a few minutes and he told me he needed to release his day with his only vice. I asked him his name, he said “Brian”, I said “I’m Maria, nice to meet you”.

After that day I saw him a number of times and stopped to chat. Brian was troubled and was kind enough to open up to me about many things, mental health, drinking, he’d had cancer, break-up of his marriage and not seeing his two daughters regularly which “were the world to me”. I remember him saying this a few times. We exchanged numbers and he kindly asked me if I needed him to pop in and see my dad, let him know. A couple of times I’d seen him smoking outside, we chatted, exchanged a few whatsapp messages. He sent me pictures of his daughters. The very last time I saw him at the beginning of the year, he was finding it difficult and I asked if I could give him a hug, he accepted. I said “I’m here”. He welled up and said thank you.

Yesterday, I found out he committed suicide and “he’d given up on life”.

My heart broke.

What comes to mind is a friend, Sandra, Da Millenial Coach who says “We cannot get the time back, once it’s gone, it’s gone”.

I hope Brian is at peace. This one’s for you and “Maybe Tomorrow, you found your way home“.

#NationalCarersWeek – Day 3 & 4 – Strategies & Advice

/ Maria Thomas / Leave a comment

Typos expected

Strategies I use as a carer

  1. Show yourself kindness – buy flowers, have a epsom salt bath, say kind things to yourself – I’m doing my best today and that is all I can do. That takes away the pressure of expectation. We are human and we feel, there is only so much you can handle day to day.
  2. Breathe – sound simple but in times of stress, we clench, we tense up and we forget to breathe. Breathe deeply.
  3. Write/Journal – don’t hold the negative in, toxicity can be overwhelming – get it out. On the flip side, write the things you do well. (make coffee, sew, clean the rooms)
  4. Go for a walk – see the details in the world when you go out – Look up at the sky, birds, colours – listen to nature, the wind, the rustle of leaves. See through the grey buildings and weather, see through the concrete and see the architecture.
  5. Music is an amazingly uplifting, it touches us on a cellular level – sing, dance, put your favourite song on.
  6. Don’t judge yourself harshly, others can do that to you. Ask yourself – Who is lifting you up and who is keeping you down.
  7. Watch your favourite film, comedian, laughter is good for the soul. It revives us and reminds us of our own sense of humour.
  8. Drink the glass of water, cup of hot beverage or something stronger. Listen to your body, it does speak to you.
  9. Surround yourself with people that are uplifting – go to that coffee shop, lean on your friends as someone recently said “that is why I am here”.
  10. Do nothing but rest if you are tired and exhausted. I never visit dad when I feel this way.
  11. Learn a new skill – set yourself a challenge – it doesn’t matter what it is, you will feel an immense sense of achievement.

Advice
There isn’t any advice because every situation is different. I try to connect with my inner voice/intuition
when something arises.
My friend said to me in the last year “he’s not your dad anymore, it’s the condition”. My friend had gone through the same experience as me, and only someone who has can say this. I felt it came from a place of compassion and it was true. It still hit me hard. I watched my mum suffer with lung cancer for three months. I now have now an even slower progressive demise to process. I have to let go of who dad was and accept who he is now. This letting go is not easy, it feels like defeat and I question how I grew up believing western medicine made me think that conditions are controllable and life-saving with treatment. It’s not!

What to look out for and what to ask yourself or the services?
1. Do your research for every appointment and medication being suggested. If you feel empowered, you can ask the questions like – what are the side effects, what are the alternatives? How does this affect the current medication he’s taking? Are there any trials he could take part in?
The system only tells you what they feel you need to know in the moment and not the whole picture.

2. Ask yourself what are the alternatives? Can western medicine work with supplementation? Is a second opinion coming from another medical doctor or are you also looking at holistic others, nutrition, naturopath.
I looked into all of the above and we did get a second opinion. The diet was a stricter one that dad is on now but still follows eliminating sugar completely out of the diet. Folic acid, Vitamin B, Vitamin D, Saw Palmetto, probiotics, Hemp oil, not all at the same time.

3. My dad has diabetes, so I do his shopping, cook his food and buy as organically as possible with little to no sugar in the items. This is tricky as not everyone can do this but could you look at ordering online for healthy ready made meals to be delivered?
Also check sensations in the hands and feet and legs, they are the first to go and older people will not feel pain, cold, hot in the same way.

4. Refined sugar has a massive affect on dad – it makes him grumpy, tired and have a sugar slump. I used to find chocolate bars/bisuits hidden around the house. I also ask myself has he slept properly? is he hungry? has he been up late? has he had enough water? Has he had too many visitors and it’s overwhelm?

5. Dad is deaf in one ear and hard of hearing in the other, accents and speed of sentances throw him and he will either pretend he heard, misinterpret what is said because he has caught some of the conversation or be irritated because he cannot be part of the conversation. Check-in – I check in with dad periodically as to what level I need to raise my voice and how slow I need to speak.

6. What treatment is causing/having the most detrimental effect? This sometimes is difficult to see or undertand. I cannot emphasise enough, read the paperwork that comes with the tablet, look online at the ingredients and side effects.
Prostate Cancer – Most men die with it rather than from it. We opted not to go for radiology – consider Quality of life over quantity of life. The side effects of that therapy with erectile dysfunction, more tablets and more side effects was unthinkable.
Dad is on bicalutamide – a prostate cancer tablet. He went through the slow release injection before this and it was causing long lasting dizzy spells, feelings of nausea, mood swings. This tablet is slightly easier and we’ve worked out a plan of three times a week with the side effects over night rather than during the day. The side effects last about 18 hours, tiredness, grumpy and he has pain in his muscles which is a side effect.

7. Memory tools for dad – photos/cards/calendars with family members. Some days I go to see him and he doesn’t recognise me because of my hair is different, my clothes.
– A phone with big buttons / a mobile phone for emergencies
– A big clock with date, time, month and year
– Games – Connect 4, Snakes & ladders, wordsearch, colouring books, dominoes

8. Carers in place through Access Services

9. Awareness of objects and stuff – Look out for bruising – I check my dads hands, legs for any bruises. What is inhibiting the space, rugs, chairs, radiators on the walls in corridors – my dad is angry and upset with me for taking these away but two OTs, The Dementia Navigator and the doctors from the hospital said they were a risk. Buy Arnica cream, great for bruises.

10. Hydration – I cannnot emphasise this enough – older people do not drink enough, this can also affect the mind. Lots of water is needed and not tea/coffee. Water!
Jelly Drops – I found these on instagram, they curb the sweet craving, hydrating and do not cause any laxative effects.

Services

  • LPA – Lasting Power of Attorney – for health and finance – get it done asap! No one tells you how important this is to do. I was given incorrect advice, it doesn’t matter if the bills in my name or I share a joint account with my dad. This legal documentation offers peace of mind when the shit hits the fan.
  • HNG Project – counselling – I cannot emphasise how important it is to talk to someone – self-referral can be made for free or low cost counselling
  • Park Theatre, Reminiscence group – Finsbury Park – For some reason my computer will not allow me to link it.
  • Islington Carers Hub – Lots of activities at outdoor spaces
  • Dementia Navigators – Fall sensors – Necklace or wrist pendant
  • Admiral Nurses – not available in Islington support for carers of dementia loved ones
  • Age UK – a range of services and support advice
  • Mobilise Online – As above but offers a cuppa in the evenings, sharing place for carers
  • After Umbrage – After a form filled out by your GP – a place for restbite
  • Fragility Teams in hospitals (Below – jpeg flier) – I did not know these existed – but all the services under one roof did a thorough examination of my dad and one doctor got the ball rolling to look into his progress and situation at home
  • Occupational Therapy – Looking at the risk safety aspects of the home and person – do they need a walking stick? Raised chair, bannister, bathroom conversion to wetroom. Normally referred by GP.
  • Taxicards – should apply for as taxis are bloody expensive
  • Access Services not Social Services – Putting the carers in place to support. depending on income/savings of the person being cared for you may have to contribute. I keep them in the picture via email about everything, stress, changes in behaviour with dad, toxic people etc.
  • PIP – Personal Independence Payment for 67 years and under
  • Attendance Allowance – a 26 page form my friend helped me with
  • Carer’s Allowance – Only available to full-time carers at a pittance of £67.70 pw
  • Carer’s Assessment – You may get money off cottages, massages
  • START programme – a 6 week programme introducing you to dementia, offering tools and techniques but these change with time too.
  • Free bus pass
  • Free TV licence
  • Winter Fuel Payment – Contact the gas/energy supplier
  • SHINE services Offering ways to save energy in the home and protect one from cookers being left on etc.
  • Fire Brigade – free alarm check and explains the risk of putting chairs up against doors and broomsticks or mops
  • Cecelia’s Cafe (Alzheimer’s Society) – Activities and builds on community
  • GP – should give you as much info as possible, ask questions
  • Care plans – Knowing the wishes of the person you care for in the long term, health-wise, do they want to stay at home until the end. Division of property, items, money especially if they do not have a will
  • Wills – Get one done if you still can
  • CQC – Care Quality Commission – complain if the services are bad – do not feel guilty. It took me a year and half to complain to my GP and dad’s GP about their services. I sat on an email for 5 months to make sure I wasn’t reacting from an angry place. I even spoke to a friend who worked for CQC for advice and waited for 5 months before I sent it. The advice was to complain if you are not happy, not eneough people do. Remember you are not complaining, if you are entitled to a service and you are no receiving it then think of it as standing up for someone you love. Essentially you become an activist for someone who cannot speak for themselves, their health etc.
  • Befriending Services – It’s difficult when you are alone and have no one
  • Podiatry – My dad doesn’t fall under the bracket of completely unable to walk, so he cannot obtain podiatry services, I have to take him to one
  • Bladder & Bowel – This isn’t an easy one but at some point it has to be done as and when

#NationalCarersWeek – Day 2 – Gratitude

/ Maria Thomas / Leave a comment

Typos expected – Tired and weary but still here!

My most grateful, peaceful days where I can forget about the world is in Muay Thai. I read that learning a new skill and being out of your comfort zone helps keep your mind and body alert. I would never dream I would find solace in drills, in hearing the wise words of my Coach, Jose and feel inspired with his metaphors of life.
I’m a total beginner, I’m scared to injure and be injured. Last year, it happened a lot and I was upset all the time with coming to class and going home bruised, unable to go to class and depressed. I started making excuses and even blamed my coach for my injuries. It was easy to blame and not easy to see that I could take responsibility in my rehabilitation. I was away on holiday by myself for a few days and I realised I could make myself stronger. I found a few exercises online and started doing them every day. We forget how responsible we are for ourselves and we have the power to heal ourselves. We are made to feel disempowered and reliant on a system – NHS. With the information out there on our health we can do more but not everyone, and sometimes it is hard.

When I first started in class, I was hard on myself for not remembering the combos, and felt like guilty for letting my sparring partner down. Someone said to me “I need to relax”. I took it to heart. I felt imperfect, rubbish and questioned why I was there. Perfectionism doesn’t exist. A construct to make you doubt, to lose faith in yourself. To attain to a height that doesn’t exist and to punish oneself with comparisons. Childhood scars last, the words of one’s carers can last a lifetime.

Jose is a Coach that has lived life, fought battles internally as well as externally. He has felt love, heartbreak, seen loss and embraces what life offers in the fullest sense of the word. He has seen his ego and he puts it in check. He teaches from his heart, and is passionate about everyone improving at whatever level they are at. There is nothing more inspiring than a Teacher who speaks to everyone in the room. I don’t know Jose other than on the mat but that’s how I imagine his life to have been. He’s the brother you never had, the father you wish had. The friend who picks you up and the Coach that makes you believe – in yourself – in your abilities – step by step.

In a one-to-one he asked me “does it have to be perfect?” I said “no”. He said “make your mistakes, learn and move on”. It’s so simple, or is it? Every time I beat myself up, he knows, and I beat myself up for showing it.

My confidence has grown in a year but I lost myself for three months. I didn’t train and it has impacted on my physical and mental health. I cannot look after dad if my energy is low. I cannot function with vim and life if I’m mentally tired. Without Fightzone I would never have found Jose and Muay Thai. I am grateful that when I have the energy I can go over to FZ and do yoga, do MT, do boxing. I want to try Bjj? I’m still not brave enough.

Try anything. Remember to feel the things you are drawn to to try, singing, dancing, sport – just do it.

https://fightzonelondon.co.uk

Me & Jose

National Carers Week – hashtag – day 1

/ Maria Thomas / Leave a comment

Another telephone call in the middle of the night from the Telecare services that my dad has pressed his sensor button and they are calling to make sure he is okay. He cannot hear the call, as the telephone is not in the same room and if it was, he would only unplug it. He sees at as a monetary saving cost. I see it as life-saving. How do you explain that to someone who has dementia? How do you explain “guilt”? There’s many things I feel guilty about, not doing enough, not being there on the days I have energy, not checking in when I’m up to it with work, not answering the fifth shouty telephone call blaming me for stealing money, stealing chairs, controlling his life etc. Sound familiar?

Reading up on dementia and the associated organisations, they talk about how the person remembers “feelings” – how they are remember this over everything? I often think what will I remember? How much processing do I have to do as a carer? How do I feel?

I’m a label in a system that sees me as nothing more than that. I am careful to navigate the various branches of the system, like I navigate my dad’s changes, looking for the changes is the key. Patience is also a facade to cover the anxiety that fills me. Any display to the system of frustration from me can be labelled as “unhealthy, unfit, of un sound mind, mental health issues, angry” and yet I feel all of these things.

“Take care of yourself” is what I hear often or “You are doing briliantly, I wish I had a daughter like you”. After a while, these words of support sound like patronising sanctimonous bullshit. It’s ilke each NHS services has been charged on offering this line of support. The GPs, the nurses, the Dementia Navigators, the OTs, Age Concern and so on. I know I sound so ungrateful for such wonderful services all free of charge! It’s a system of disconnection, a system that wears you down, it’s not simple and communicative, it’s hours out of your life that you will never get back, you never get paid for and you have to give back in hours of actual paid work.
These systems work in the same arena but not in the same area or hold the same responsibility. Now it’s someone else’s job, and if you ask for help, you have to do the calling, you have to fill out 26 pages of convoluted confusing paperwork. It’s like doing essays at school, there’s a construction to follow and if you don’t it’s F for failed – fucked up – fuck off.

I feel deeply for those who have no one to help or assist, for those who get left behind or lose out on monies that are rightfully theirs.

Where does all of this anger, strain, exhaustion go? In my body! I become ill, injured, sick. I forget things, I drink, I eat crappy food.

One person I need to shout out to is my partner, my hubby, I cry many a night that he is still here, present and just as exhausted, standing by me, holding my hand. Answering the Telecare services at 2am when they can’t get hold of me, patiently telling me to ring my dad to check he’s okay. The guilt I feel knowing he has to get up at 4am for work and he doesn’t get mad or angy. He is not my carer and I had to disentangle that label that was beginning to appear. He is my lover, my love, my friend, the one who makes me laugh, who tells me he loves me. He tells me how it is whether I like it or not. I don’t always agree but the respect is there.

It has not been easy and is not in any way one model fits all.

I feel exhausted – mentally – physically
I feel shitty – about me
I feel and am angry, at myself, at the world, at my dad – he’s never been easy
I’m passive aggressive – I hate it, it’s a skill I learned from my family
I feel alone/lonely – siblings who do not like me
I say sorry…a lot – a childhood trait
I feel unattractive – It’s uncomfortable to fathom the opposite
I feel fat – always
I feel non-sexy – Have I ever been?
I feel like a fake – How do I get up and still show up in the world, feeling the way I feel
I feel like I can do no right – a childhood trait
I’m stressed – I cannot breathe
I lack patience – especially when I am being shouted at by dad – I question – is it the condition or is it him?
I lack empathy – I feel numb from a compassionless upbringing
I lack energy
I hide behind a smile – It’s the only effort I can make at work
I hide behind work – I am a workaholic
I’ve lost my sense of humour – I’ve discovered, I can actually be funny…working progress
I don’t understand things that are said or the tone in which they are written in sometimes – am I dyslexic?
I forget stuff sometimes and – is this the beginning of memory loss?


Holes are dug by our deepest demons and some how some way you have to crawl, scratch, fight your way out. Some of those demons are not only within or from childhood they are out there in the physical world too, they are called “institutions, systems”.

A year out of all activities other than work. Re-focus. Prioritise. Look at working on building my mental and physical health. Working on me. Putting me first. What does that mean? I’m still figuring it out. I work toward being a better version of myself every day. I won’t get it right but that’s okay. And that has been my mantra for the last year. “It’s okay”.

It’s okay to stop, take time out, relax and do nothing, not train at the gym, not to see anyone, not to see dad on the days I am exhausted and have zero per cent resiliance. It’s okay not to do my passion for a year, not to be involved or be seen. It’s okay to be me, find me and live with me.

When I asked for help from my dad’s GP and my GP, all the words they could offer was “have I thought about giving up my job to become a full-time carer?”, instead of suggesting counselling. I was pretty shocked and astounded about how loaded that question was. Sexist, yes! At no point did they say I could “self-refer”. When your mind is consumed with a thousand things that are not yours, some guidance to a new path could be given.

I hope you find yours.

https://www.stressproject.org.uk

https://www.mobiliseonline.co.uk/


Lea-der-ship

/ Maria Thomas / Leave a comment

I’ve been listening to a number of podcasts over the years, reading material and attending workshops on what it means to be a “Leader”. I thought it meant being in a position of hierarchy in an organisation or institution. I thought it mean a title like CEO, SEO to Head of such and such. I thought it was associated with money and it equated to your financial power on the ladder. And when I think of all theses impositions that Society places on a person to become or attain to, it’s pressure and a set up for feelings or failure and lack of self-worth.

I am sure there are people that do not think this way because that is not how they view their place in society or the world. These people create their own channels, their own hierarchies; their own self-worth is validated by what they give “meaning” to or “value” to. Is this what equates to one’s own values in what they give or do in the world. It is assessed by themselves rather than individuals or people in hierarchical roles?

I feel like I am a “Leader” but why? How can I call myself a “Leader”? Do I lead others? No. Do I manage others? Sometimes. Do I lead myself and navigate the challenges that life throw at me or situations that arise? Yes. Does this make me a “Leader”?…I don’t know.

Listening to others talk about their roles as a “Leader” is defined by the many roles they have been designated in institutions in their life, by choices they have had to make, by juggling personal and work situations, but does these experiences make us or one a “Leader”?.

The question that then arises is “do I see myself as “Leader”? If I cannot answer this question, does this mean I “fail”?. Or does this mean I “pass”?. Do I need to know one hundred per cent? Do I need to affirm to the world “I am a Leader!”. What if I am a “Leader” but do not know it? What if I am a “Leader” but lack confidence and belief in myself? What if I have “imposter syndrome” is this what leads me in my day to day existence and the word “Leader” cannot pass by my lips? Is doubt part of it?

This week I feel weak, I feel I have failed at many things. My patience has worn down, I am surrounded by toxicity that suffocates me. I have been triggered by emotions that I had been denying and suppressing that I cannot breathe with the overwhelming anxiety and heartbreak I feel. A part of me says it’s okay to feel this way and to sit with it even though it is uncomfortable, painful and unbearable. A part of me says why the fuck have I been having therapy for this to rear itself now and not during the last year.

“Process” – everything is a “process. Well fucking hurry up and process the process, is what I say.

I am tired. I am fed-up. I want to step outside of duty because it’s a thankless job and I feel slapped, punched and kicked at every turn. I want to let go of the people that “hate” me and I don’t use that word lightly. For me it’s a strong word but so easily felt from others. My hope is to continue to heal, my heart feels like half of it is numb from all the knocks it has had and the other half is sagging from all the air that normally keeps it pumped with joy and life.

I want a big fat hug, I want to feel the love from that hug, I want it to mean something because I mean something. Does “Leadership” mean something? Maybe it does at the time one feels like a “Leader” and when one doesn’t feel like a “leader” it means nothing.