Author: Maria Thomas

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.

Dementia

/ Maria Thomas / 4 Comments
Me & Dad

Writing is cathartic, writing is creative, writing is liberating. Writing is also a vehicle to express one’s most inner thoughts when sometimes vocally it can be challenging to express.

I feel like there ought to be a group I go to and stand up and say “Hello, my name is Maria and I am a carer for someone with dementia”, and then tell my story. This year I figured I would focus on my mental and physical well-being by not taking on a million projects and try and give myself some love, rejuvenation, rest and strength in training.

I’ve been a carer for my dad since 2014 and in short, it’s tough. I’m grateful for many things before you say anything, I have written in my journal, and yes I meditate, do regular breathing, write the things I am grateful for everyday, exercise regularly and spend time with people who lift me up. Nothing can describe or be prescribed or prepare you for the constant pressure, the resentment, the stress, the anxiety, the triggers, the memories, the forgetting, the patience, the impatience, the anger and more.
I love my dad, and that is not in question here but there are a number of people like me who get left behind, who get left holding the weight of responsibility and again I know it is a choice but also an expectation from the institutions that you “are doing incredibly well”. That confirmation suddenly begins to sound very patronising.

I cry a lot, sometimes silently inside, when I walk home from my dad’s house, I cry on my own at home. I am tired and exhausted and my physical health is beginning to be affected by the stress factors of worry and dare I say loss. Am I grieving?
Last weekend was the second time in two weeks where my IBS was triggered by foods/drinks, on Monday I fainted hit my head on the wall and passed out. I awoke on the floor of my tiny toilet, wondering if I would be able to get up or if I had broken a bone. I got up bruised, embarrassed and called my partner for help. Luckily, this isn’t a long term injury or condition but it could have been. I’ve been ignoring the signs to look after me for a while. I’m no martyr, I get on with it.

I’ve spoken to the various services for help, and you get passed from pillar to post because none of them speak to each other. I’ve consistently asked for help from my doctor/from my dad’s doctor, the responses came back;

  • Would you like a sick note for some time off work? (no)
  • How would you feel about giving up your job? (the one thing that I love and keeps me going)
  • Would you like anti-depressants? (I don’t need to numb the pain, I need to talk about it)
  • Could you give up your job to care for you dad full-time? (that is not an option, I have a mortgage and bills)
  • What can I do? I’m not sure those services would listen to me. (call them, write to them)

And then the questions from the various services;

  • Have you tried the START programme (yes, but it’s only a six week programme that helps you understand dementia, offers tools and I do most of them. It doesn’t prepare you for the changes and how to deal with them.)
  • Have you applied for carer’s allowance (it doesn’t apply to me I work full-time)
  • Have you signed up to the activities for carer’s online (are there any activities after 5pm? Weekends?) No
  • Can your dad do activities online? (I work full-time, there’s no internet access) Can you not be there? (no, I work full-time)

I look at the Alzheimer’s Society website, the data from 2018 suggests carers save the NHS 132 billion a year. Wow, I am astounded and yet I feel like there is very little care for me.

There’s been a lot to deal with over the years, housing, money, diabetes, a half brother, extended family, prostate cancer, not being Egyptian (say what?) and now dementia. I often think what did I do in a previous life? Is this my Karma? In the end, it’s just the cards I’ve been dealt. I am lucky I have an understanding partner because I have not been the easiest during this time, I have been solely focussed on my dad, using all my reserves to be there for appointments, clean the house, cook the food and I’m no saint because it has triggered past emotions, memories of growing up in a house where love didn’t exist, there was no “I love you, you’re doing a fantastic job”. There was no support in my dreams, I was constantly belittled, I was blamed for everything, where my strict upbringing was due to my dad’s undisclosed faith, undisclosed truths, where punishment was still acceptable by the hand. 
I’m surprised my partner is still with me, just when I thought I was opening up to me. I’ve become withdrawn, suspicious, irritable, closed down, angry. I need an outlet and it shouldn’t be unleashed on him.

Now, I don’t say these things out of pity or hate, I say them openly because I thought I had let go and dealt with much of my past. Moment to moment has been another obstacle course to prove I can move through, patience, calm, reasoning, but also understanding as an adult, understanding of the quality of life, the ever changing condition, the knowing and accepting. The language and words I use, how much do I have to give or do in order to be there? Have I got other support networks? Let’s not go there. Am I seeing a therapist? Yes.

I’ve forgotten who I am? I’ve become labels in the system; carer, step-mom, half-sister, full-timer, partner. I used to dream about doing things in life instead I feel tired and under valued and couldn’t care less about the future. I use to be happy with my figure instead I am two dress sizes bigger and feel self conscious and fat. I use to wear dresses and do my hair and now it’s tied back, and I live in joggers and t-shirts. I used to be someone…

One of my close friends said to me once “usually the carer goes first”, how that has stayed with me. Friends have privately told me their experiences of dementia with their families and again what stands out is “accepting they are no longer the person you knew”. I cry when I hear this because I still see the same man as my dad, am I living in denial? No, I understand there will be constant changes. But I hurt, I am in pain and part of that pain is losing another parent and part of that pain is my dad losing himself. 

I lost a part of me when mum died, will I lose more of me when dad goes?

A list of things I have tried to do to help dad;

  • A diary with times of appointments
  • organic food freshly cooked, very little sugar in his bought foods
  • games: snakes and ladders, dominoes (he always wins at this) colouring books, word search, connect 4
  • walking, mosque attendance, classes when they resume
  • signs to remind him of things
  • massages (shoulder and neck)/ gentle exercises
  • encourage him to remain independent and mobile
  • call him daily
  • Cards with photos of recent times/birthdays/people

A list to help me;

  • Sleep is so important (try for 8 hrs/ but don’t be hard on yourself if you only get 6 most days)
  • Speak to him less when I am tired/grumpy
  • See what type of day he is having on the telephone
  • exercise/ meditate / take a bath
  • read a book/ write (I write a lot)
  • work / dance / listen to music / do something I love
  • Ask for support until you get it and if you’re not happy complain (include your MP/Counsillors)

Love and strength to you all out there. Every experience is different and personal. You are doing your best and please love who you are through this process. I am still trying to figure out how to love me.

Stepping onto the mat

/ Maria Thomas / Leave a comment
Fightzone London

Over the last year I’ve seen and heard so many changes in the world, locally, in my friends and within me. They have influenced my thoughts, behaviour but mostly how I see the world via a different lens each time. It’s not often I hear some gems and not the type of cubic zirconia but the rare kind of pink star diamonds. Stepping into my Muay Thai class a few months back was like attending a session with one of my favourite motivational speakers, it was like being in the company of someone you just click with, no egos, no competition just in the moment. It felt eye opening, healing, awakening and I had to say to the coach, “Jose, I just want to record what your saying as it’s inspirational, and I want to wake up and play those words to myself every morning”. It’s just like melted chocolate words of wisdom and no I am not a lovesick teenage over my coach or an obsessed groupie. When you listen closely to the whisper of the universe it resonates on a level that one cannot describe.

Some days I live in hope to find the energy, the words to engage the teenagers I work with at the Ben Kinsella Trust and Head Held High. There are days when I seek that frequency of wisdom that befalls those that we quote from like Rumi or Maya Angelou. I hope that I might inspire daily people that I meet in the various industries I float between (acting, educational, events) but most days I struggle to talk. With over 171,000 words in the dictionary, my mind stumbles to find a sentence. This year I struggle to find the words to motivate me, my mind has an inner dialogue speaking another language, my body is on autopilot and still in bed and occasionally they (body and mind) might be in the same room at the same time, like in my training class.

I like focus, because at this point, I need another coffee or I’m really hungry.

Could I tell you what coach Jose said that day in between breaking down the drills for the hour. No. What I do know is how it made me feel. I felt a surge of courage, I felt that anything in that moment was possible. My internal dialogue was “Maria – you’ve got the drills nailed, coordination is on point and you’re having a strong day”. 

Jose talked about imagining oneself being in that fight, in that ring, it’s just you and your opponent. The words that day were an awakening and I looked around wondering if anyone else was drinking in this life affirming liquid or was it just me, had I drunk the cool aid? What can I say when the universe communicates on your vibe, you have to listen to its frequency.

It dawned on me this was a metaphor about life. I often think that my opponent in the ring is ME, the me that deals with the internal struggles; the self-belief vs self-doubt. That nagging inner voice judging, making comparisons and telling me I’m not good enough. My ego walks the fine line of thinking that was a good class and telling myself ” I’ve learned a lot in this last year” to “fuck off you still have so much to learn, and maybe you will never be as good as you hope to be”.
When ever the coaches, Jose or Arthur, come round to verbally encourage everyone, something inside me seizes up, tenses, my coordination fails and positive comments throw me. I find it difficult to digest compliments, I find it even harder when my Coach/Teacher is encouraging, says a lot about my upbringing. One of the things Jose says is “you make a mistake, you learn, let it go and move on”. I so wish, I lived by this mantra growing up. I wish I could live and breathe it now. 

The truth is at the end of that class I realise I step onto the mat as my 7 year old scared self, frightened of this new environment, keeping in my lane, head down. No make-up, no glamour, just me. Go in and get out. I beat myself up for the mistakes as though I should be perfect first time. How did I become that insecure, if I think about too much I cry. Still time to grow. The adult me knows that’s not me, I try something new, I’m a people person through and through. I could not have read ‘Tribe’ or listened to my friend Dan’s podcast and learn nothing about “belonging”. Not to say we will always belong to one tribe or stay in it forever but when you find something that feels right, you stay for as long as it serves you in what you need to learn about yourself. 

When I step off the mat, I step back into my adult self having added more to my experience. I’ve learned my opponent can be pretty fierce and powerful, that I need to protect/guard myself in certain places. The irony is I think I have more barbed wire up than I realise and maybe this metaphor is about boundaries and putting them in place for people who drain and take energy. Maybe I also need to loosen and lighten up.

What I have learned about me on that mat is that I say “sorry” and fuck” a lot! 

What my hope to do one day is to step onto the mat as my adult self with self assurance, all the knowledge, experience, skill that life has taught me and look at how far I’ve come. To tell that 7 year old self who might now be 12 years old that she is brave, courageous and is always trying out new things on her own. That self doubt will always be there and it’s up to you if you allow it to get the better of you or not, it is a choice. That whatever zone you’ve stepped into today, it’s a journey that allows you to evolve and grow. There will be many zones you will walk through in life, Maria but there will only be one Fightzone.

2021-Tired and worn out

/ Maria Thomas / Leave a comment

When I was in Thailand at the end of 2019, I thought I was recharging my batteries for a new year ahead. It had been a stressful year combating the changes of an elderly parent with dementia, and battling with various services to listen and help. I had a vision of 2020 being the year of travel to another unknown, an exploration of new terrains where I could feel the sun on my face, learn about a new culture and unlock a different part of me. But 2020 into 2021 has been just as stressful if not more due to Coronavirus. I’m not complaining about the pandemic and the ways in which it has changed the way we live possibly forever. I’m talking about the side effects, the curve ball, full on in your face, ripple, emotional and physical effects. This is what is going to live with us long after some “normality” is resumed.

I am so f**king tired. There are days when I cannot think, I don’t want to speak, I cannot breathe. My partner and I have been talking about “joy” and “light” recently and to be honest, it’s hard to see any of those things when you don’t have the energy to find your way out or lift yourself up. If I’m honest, I am not really sure how I have shown up every day to work, to be there for loved ones or my partner; it feels like one endless road of sheer relentless shit.

All the effin positivity, motivation, 21 days of abundance, breathing and training I am doing is not helping my well-being. All the self talks, tools, coping mechanisms have fallen by the way side and I don’t know how to get back on track. I don’t want to do another zoom workshop. Now, I sound resentful and gawd dammit I am, I just want to be able to book myself into a hotel by the sea, feel the sand beneath my feet, the sun on my face. I can’t even do that. It’s so grey here. London, I love you but I need more colour in my life other than Netflix.

My past haunts me, the “what ifs and the maybes”. Was it so good? Did I have so many fun moments that only now I can see how grateful I should have been or am I living in a fantasy of unrealistic stories of the past. We all view moments differently, and each could tell a different version of the same moment. Maybe my shade of haziness is lined with drunken forgetfulness of the reality?
Does this mean I am not happy with the present? Does this mean I am doubtful of the future? Where is it all going, can any of us be certain anymore?

As a teenager I had dreams of moving to the US, of wanting to be an actress full-time with an apartment in New York and a flat in London. I would travel widely and my success would afford me my own business and financial freedom. There would be direction, security, maybe children, marriage and certainty or is that last word meant to be replaced by security? I don’t know…instead my life is the complete opposite. I’m not complaining but reflecting. I’m not naive but still adjusting. I’m not dissatisfied because I made choices every step of the way. So, what am I saying? I don’t know anymore, I don’t know what the future holds and that is unsettling when nothing seems certain in the world outside. Am I just afraid? Yes. Am I realising that my OCD is kicking in and I cannot control the future. Yes. Am I bored due to lockdown? Maybe. Am I the only one feeling this way? I don’t know.

What if this is all there is? What if this is as good as it gets?

My only aim for this year so far is pressing the pause button to declutter, recharge and give myself the space. To think. To be. To heal.

Comfort zone or Fightzone?

/ Maria Thomas / Leave a comment

“Comfort zone” as “where our uncertainty, scarcity, and vulnerability are minimized-where we believe we will have access to enough love, food, talent, time, admiration”
Brene Brown

Sometimes, I really love where I am in my life and what I mean by this is I have a job, I have choices and I can make these choices based on my age and experience in life. There are days when I look at kids whose parents encourage them into an activity (notice how I said encourage and not force), how I envy this choice as a child to be able to do something that becomes a passion. I am certain this is how you find “your thing or one of many things”…I’m so eloquent with words. I also believe this is how one finds different zones “comfortable” equates to safe, secure and “I like it here, I might stay for a while”. We surround ourselves with like-minded people, a support network of sorts, close but not too close, then there’s the odd challenge but nothing overbearing and mostly tolerable.

Ahem.

Life has a way of throwing one’s comfort zones out with those challenging people, situations and sometimes one may go out and seek the challenge. Find the discomfort in order to know what it is they like about the “comfort zone” so much. I digress. I believe we live this life and start a new one every time we face trauma, death, birth anything that is life changing, we become a new version of our old selves. It sounds obvious, I know but I couldn’t see it before 2009, and it’s not necessarily that I see it clearer now (because I still wear glasses and somewhere I developed a SOH…shh don’ tell anyone) but the best way I can describe it, is reading or hearing something you already know but at that moment you hear/read it, it has an impact, it changes your perspective, how you feel and it can change your life.

Life defining moments feel like an ageing process in a short space of time but equally the fuzziness is you don’t know how you got here. Even though I remember everything preceding 2009, well most things, some of my memories I let go of. Maybe they didn’t serve me, maybe they held me back and were toxic and maybe it just didn’t matter anymore. I guess when a parent dies, many things that mattered previously don’t matter anymore. So, you ask yourself what matters, you look at yourself and something apart from death slaps you in the face, and forces you to ask yourself “Who the f**k are you?” in the broadest sense and say goodbye to your comfort zone.

One of things I said to myself is “I want to live life to the full”, I haven’t been living. I was a fool, as not knowing what that really meant, I interpreted it as “let’s paarrrrty”. Drink upon drink, late nights, excess spending, blah blah blah. Did it serve me? No. But it became my comfort zone, my numbing zone. I realised after bereavement/regular counselling, working eight jobs over eights months on 3-4 hours sleep, breaking my ankle that took me out of acting for two years, that this was not what I meant when I said “I want to live life to the full”.

Another trauma, another period of reflection and another new me.

Jump to 2017 and I never thought that writing a short film about a female boxer would take me to Islington Boxing Club for research, a reading of my script and a love of boxing grew. However, I am the first to admit that I get restless quickly, I like change and realised I like trying new things (Oh this is the new me) I know, that sounds totally facetious but it’s true! I haven’t made the film yet, partly because I wanted to be in it…hahaha I know, me, as a boxer first I would have to obtain the figure of a boxer and secondly I would need to believe that I could do it.

A slight aside, I was listening to two BAFTA talks, one with Noel Clarke talking about ‘Bulletproof’ and the other was the BBC Writers Room both saying that you have to push through with your vision, I kind of still am. Pushing through with writing but sometimes you have to park stuff in order to move forward.

Back on track to 2018, I always wanted to travel on my own and long story short I was seeking sun, workout and rejuvenation. I decided to go to Thailand after seeing and asking a few friends about the places they had trained in. I wasn’t keen on doing just a yoga retreat as I had done that already and loved the two free surfing sessions thrown in. Again, was I coming out of my “comfort zone” or was I trying to find it? I was learning to swim that year and somehow I felt brave to be in the sea in a way I would never dream of. I liked this new me, it felt carefree, adventurous and spontaneous.

I entered Tiger Muay Thai, Phuket in December 2018 with no expectations bar that I was going to be surrounded mainly by men but I was pleasantly surprised to find women there too. I remember a friend saying to me “only you would go on holiday where you can go to the gym too”. Yes, I laughed but what did this really mean? Was I about to embark on a career in MMA. Ha, hell no. I hate violence, I work with people and teenagers, I’ve worked with kids. I am a nurturer, a carer, I encourage so why these violent sports. Well, I had never explored that element before or that side of me. There has to be something in me that desires that interaction, there must be an excitement that thrill, right, otherwise why would I do it. I don’t seek a career in it, I aim to get good at it, so is this my thing?

Fast forward to November 2019 and now a month in Thailand and training in Muay Thai and Krabi Krabong. That was it, I knew when I came home I would be seeking a class in either to continue. In January I entered the world of Fightzone knowing I would be looking around to discover which fight gym I would settle in. Normally, I’m confident/comfortable in myself since I started weight-lifting but coming into a fight gym is on another level. Oh, there she is that new me again, another life.

I never thought for one moment that my journey to explore the market would end. Jose, the Coach was supportive. I had a partner called Jenny, experienced and patient, and I was elfin bricking it. I said/say “sorry” a lot, I swear and I tend to beat myself up when I don’t get the simplest of steps. I didn’t realise the child in me who never got it right still exists. I hoped she had grown into a confident, self believing, easy on herself woman. Sigh. Nope, still need to remind myself every day and in every way, Marie Forleo’s quote “progress not perfection”.
12 months in, I still love it, I’m still learning and I even bought gum shields to gently spar. “Not the face, I an actress, don’t you know”. It’s kept me going during 2020, online and in-person. I really wish I had found the sport as a child and maybe the child in me may have grown up differently.

I’d rather be in Fightzone than my comfort zone.