Experiences

#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

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.

A Writer’s lover…

/ Maria Thomas / Leave a comment

Listening to Neil Gaiman on Tim Ferriss’s podcast “The Interview I’ve waited for…” was quite a joy. My favourite over used adjective word came to mind, it was “inspiring” but no that was not the word to use here. There was a sanguinity to his tone of voice, something decadent about the way he spoke, his reverence for notebooks and fountain pens; and esteemed love and sadness for his friend, the late Sir Terry Pratchett.

To be honest I didn’t know what to expect from this interview and for the first fifteen minutes I was thinking, really…we’re going to listen to Neil Gaiman talk about the materials he writes on and pens he writes with (long). But as the adoration of using these tools to craft one’s art went on I realised that I share the same love for notebooks and passion for writing. I do enjoy typing but there’s nothing like a pen in your hand and writing on paper, gliding the words on the page, the continuity of thoughts.
I worried that my love of stationary was a fetish and I had an unhealthy obsession with pens but what I have discovered is that they are my lovers, and I am just a lover who requires the tools to play with. I know what you’re thinking but I am talking about the  form and process of writing.
Journalling, story-telling, screenplays, poetry – I love words. My vocabulary may not be the landscape of the seven wonders of the world or overwhelm you with colours and shades of the Sistine chapel but I’m sure there is a place for me as there is for you. I guess I feel “normal” and less “abnormal” to be a lover of writing, is it a form that is dying out?

When my partner gave me ‘Neverwhere’ for my birthday, I remember reading a few pages, found myself bored and put it down. It didn’t interest me. I came back to it a year later and couldn’t stop reading, what had changed in a year? I’m not sure, sometimes I’m not ready to read certain books which is why I buy them and shelve them for years. I might read them one day, my aim is to read the ones that I have on the shelf and in storage (gulp).

I love London and reading a book that weaves inside and outside of London streets that I know captured me, I could relate. Whilst working for an old Livery Hall that dates back to the 15th Century, even more stories were animated in my head.
(SPOILER ALERT) I remember leaving the bus just as I finished ‘Neverwhere’ and looked up. I was astonished as there in front of me, I caught a glimpse of ‘The Marquis de Carabas’. I was grappling for my mobile phone lost in my bag as the bus stopped at St Pauls to take a photo, and I thought there it is, London Below has come up to visit London Above. I was so excited I tweeted @Neilhimself

 

I became even more of a believer in fantasy, wonder and possibility. I thought of my “inner child”  not the psychologically damaged one but the “innocence of youth”. It had taken me back to Edgar Allen Poe, Hans Christian Anderson and the Brothers Grimm. Dark stories that I read in my childhood, stories of truth with characters not so beautiful and perfect but those that questioned thyself and others. I grew up with horror and  thriller influences (poor me). I look forward to ‘Good Omens’.

I loved Neil Gaiman’s honesty in what friendship was for him and the loss of a loved one. The beautiful memories of past conversations, accents, admiration, devotion, hearty laughter and an emptiness of being when they are gone. Death reminds us of moments we’d almost forgotten, a period when we experienced happier times. A soulmate of another kind.

Have a listen.

What is my “legacy”?

/ Maria Thomas / Leave a comment

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I used to believe that legacies were about children and inheritance of heirlooms and antique furniture. I used to believe legacies were for the rich and famous like Richard Branson or Mark Zuckerberg. I used to believe a lot of things that I don’t anymore, am I jaded, more experienced, older, maturer? I scoff whilst writing this in a cynical inwardly way. Like only I understand the joke, only my inner voice understands what that means; or inner child, as the psychologists or mindfulness community might say.

I travelled abroad recently and had this notion to bring my books, my journals and downloaded a few podcasts to really keep my mind active and engaged intellectually. (I scoff again) Did I read any of them, no. I stayed present to the moment, had pockets of beautiful conversations with some inspiring individuals and exercised hard, well hard for me. Whilst away I believed I would be discovering all these different paths of who I was (existential questioning we all do), what was I to learn on this solo travel. So much of what I learned was seeping its way through upon my return home and not abroad at all. I realised many things about myself, I don’t like the cold, I acclimatise really quickly to the exotic weather (yes, I have many continents in my blood line), I love travelling and it was freeing to do it alone. #yesmyboyfriendapproved and #noididntneedhisapproval
What I realised is that I had taken on the weight and woes of my family and I was discovering who I was in the process. A journey that will never end until my last breath.

So, back to legacies, I started working with the Ben Kinsella Trust and Head Held High just before Christmas on a programme called ‘The Best You’.
Sometimes, I believe, in life we have these serendipitous moments which we either listen to or ignore; what I call the ‘universal alignments’. I’ve been turning the volume low for the last few years without trusting the universe to let things happen. (Now, I know that might sound a bit whacko but most people who know me, knows that I am spiritual). When others come first before your needs, it takes a life changing experience to allow you the time to re-assess your needs are a priority and that is not selfish!

So, ‘The Best You’ programme is motivational for teenagers to get them thinking about their futures, how they can make different choices to protect themselves and to discuss the prevalent rise of knife crime. I worked with an amazing woman, Tash, who has been doing this work for six years and it really shows. There are so many moments in my life where I feel so damn lucky to meet people who not only inspire me right to my core but also I feel so privilege to see how committed, passionate and caring they are in their work, and Tash is one of them.
There’s no time for ego, this isn’t about us, this is about them! I have cried more over this programme and felt so deeply from my soul, than I ever have in crying out of sadness or anger.

The programme started in January, all the teenagers in the group knew people who had  been affected by knife crime or they themselves had been affected by knife crime. The programme had seven teenagers take part, lasted for six weeks, took place in their school with a visit to the Ben Kinsella exhibition.

Was I affected? Yes, every week I went into the classroom, and then onto my full-time job. On my second week, I sent a text to Tash to say how much respect and admiration I had for her knowing how long she had done this work for. I then asked my work colleague if I could have a hug. I cried on my colleague’s shoulder and felt two things “hope” and “progress”. I could see the cogs starting to turn, the pennies dropping, the trickle of change, you could feel the shift in the room when someone had been honest and vulnerable. Every week everyone came, they didn’t have to participate, they didn’t have to attend, the class wasn’t compulsory but every week we saw the same faces and kept reminding them of the reasons we were there. We were there for them, to open their eyes to who they could be, accepting responsibility for their choices, having the opportunities to change their responses to situations.
I felt very much this was a learning experience for me too, what was I doing to be the best person in my life, for my partner, for my family and friends; applying those things that I was saying was tough. I learned things from my friends which questioned who I was in the friendship and staying open and receptive is one of the hardest parts of being human; to not judge and to not be offended.

Today, in our last session together, I was sad that I was not going to be there next week. One of the lads said “why was the programme not going on for longer?” and I felt Tash and I had done our job in that they could see the benefit of this type of work. I felt like all those podcasts I had listened to where they ask the interviewee “what advice would you give your younger self”, I felt like this was my opportunity, I had had six weeks to impart my wisdom, life experience and emotional maturity but I couldn’t find the words and I’m more “story-teller” than “short and concise” type of person. How can you know what to say that relates to the work you are doing, how can you say all the things you wish you could say without the abbreviations and use all the expletives the schools deny you of. How can we make a change in the short one and half hour class that we get?

When you work with someone who gives you the space to lead part of the session and lets you run with a personal experience, all I can say is today was a heart opener. I shared something that even some of my close friends don’t even know about but laying one’s heart out there is not weak, it’s strength in being able to be vulnerable and open. Brene Brown’s Ted Talk covers this on ‘The Power of Vulnerability’. I left the space like I always have with two words in my mind and heart, ‘Hope’ and ‘Progress’.

There’s no selfies or “let’s keep in touch” but there were “thank yous” and a hug. Priceless! I’d been thinking all week what my parting words would be and this was them “I want to meet you in the street in 4-5 years time, shake your hand and hear you tell me what you have been doing. I don’t want to see you on the newspaper because you’ve become a victim”.  I am sad not to be going in next week and shaking each one of their hands and saying hello. I am sad that six weeks doesn’t feel like enough time but I feel lucky to have had the opportunity to work with them, to be inspired by them and to set goals for myself because of them.

So, I come back to legacies, is this my legacy or theirs? I think it’s our legacies that we create and hope we pass on. I have hope in the future of the next generation.

Thank you Ben Kinsella Trust, thank you to Head Held High and to Patrice.

 

Acceptance

/ Maria Thomas / Leave a comment

After completing Mastin Kipp’s 40 day ‘Claim Your Power’, I wondered if I would feel enlightened with my “Creator”, ecstatic in the my “action steps” approach to following my goals and dreams; and quit my day job. Was I excited that my relationships with my partner and family were about to elevate to the next level?
I felt the anti-climax of when an acting tour finishes and you know you’re going back to reality, the next acting job hasn’t come along yet and you have to go back to those faces in your regular job which either you dislike or the job is soul crushing.

Do I listen or read these self-development, self-empowering books because I want to find the answer to what I’m not doing right, seeking the reasons why I have not moved further along in life, to listen/read to another person tell me if I’m not “working to my goals once a week, it’s a dead dream”. Is it about my dreams?

I figured through this process it’s about my approach to everything and just like juggling human nature and the personalities of friends or the dynamics of work colleagues; it’s my approach to life.

My dad was diagnosed with dementia earlier this year, I looked at the research to prove to myself I understood the levels, the stages, the ways in which this debilitating condition can take over. It’s a slow burn of fire dying out on a summer’s day, at its height it’s beautiful, powerful and sometimes uncontainable and at it’s low it’s ash blowing in the wind returning to the motherland. What am I doing about it? I’m trying to control it, the doctor is trying to control it and for the first time in my life, I don’t feel unhappy and alone. Is that strange? The support from the NHS has been great, the support from my partner has been incredible.

I’m able to take my Dad to acting classes, memory cafes, dance and fitness classes (with the help of another reluctant family member). We have got him a diary so he can write things in to remind himself of what he’s doing daily and who he’s spending time with.
The biggest impact and stress for me is knowing which are the important parts, hospital/doctor appointments etc. Since my Dad came home from Mauritius in 2014, the last four years have been applying to the council for a home, sorting his pension out, him being diagnosed with prostate cancer and then this year dementia. I wonder if life has it in for me but it’s not me it’s happening to, it’s him. I cry and want to scream and shout at the world “why is it all on me?” and it’s because somewhere along the journey, I have become the responsible adult in all situations, and the roles have reversed.  I wonder how I can put yourself first, stay on top of my health and deal with anymore? I can’t and I have to get on and find the time when I can. It’s not about complaining, it’s allowing yourself to feel frustrated and not beating yourself up for the guilt that is totally out of your control, and out of your hands.

So, back to the book, what has it taught me in isolation to this area of my life, “Acceptance”. A really difficult area to understand in it’s full limited, restrictive layers unless you understand yourself to a degree. “Acceptance” is the most enlightening area of my life right now. I find it difficult because it brings its friends “control” and “judgement” to back itself up every time but it’s my fears of this that has been difficult to acknowledge. Accepting, what I cannot change, the future. But I can change the here and now by looking at it through a different lens. I never thought I’d be talking to my Dad about his “After Care Plan”, they are ask questions, you’ve never been prepared to ask your parents before, “How do you want to receive NHS treatment, do you want to be resuscitated, do you want the doctors to give you all the medications available” and so on. About his Will and what he wants to leave to people, about all sorts, and i am glad to say thank gawd I found out about the Death cafe, because it helps to talk about death openly.

All my Dad can hear when I ask him about his personal life and history is suspicion, and he asks “why? Why is it difficult to see loved ones suffer, it’s because the conflict starts with ourselves, our views, opinions, judgements, influences. The reality is he cannot change, he’s not a man that understands how to to talk about his emotions and never really understood others. He’s complicated and has a limited view of the world because he doesn’t really engage in conversation to know who people are or understand the world around him.  So, if anyone had to change, it was down to me, I don’t want to be the dutiful daughter anymore, I don’t want to pat myself on the back and say “I was there when he really needed me”. I want to be more than this, so I realised it was time to create new memories, however short lived they might be.

I am creating new memories of fun. I never thought of my Dad as a scared, frightened, and stressed man knowing that life is coming to a close. Maybe we never really think about the time when our bodies will start to close down, and stop working in the way we hope it always will. How do you admit, you can’t remember people, places, things? How do you talk about death when you’ve never really discussed it with family?

I am really lucky to still have my Dad, he isn’t an extreme case at the moment, he still remembers, still gets about, still cognitive. I have to find ways in which he can answer questions that are too much for him all at once. I sat with him yesterday whilst putting on a TENS machine for his achy muscles and played some music from different periods of our lives and showed him old photographs. A simple action but really worth putting the time in. I recalled that all through my life at home, two of the most prominent memories I grew up with was music and photo albums. Dad had created those memories for us and now it was time to remind him of those memories and create new ones for him. It is time to have fun with him whilst I still can and because whatever time I have left, I don’t want it to be about appointments, doctors, medication and duty.

If I only had today…

/ Maria Thomas / Leave a comment

Today I came home crying, I’ve been here before, losing one parent was difficult enough, not knowing how long it would take, the journey it would take and how Cancer would play out. This selfish all consuming, all devouring disease with no inhibitions or care in the world just an egotistical swipe left ghost of a figure.

Why did I cry? The next part of the journey is a different equally challenging one, Dementia. A debilitating, short term memory swiping not quite disease. Still a condition that is labelled with stages from mild to essentially “no hope”. Still not answering the question, “why did I cry?”.

Gratitude – that  I had this moment today? Grateful that I had a day with my Dad?
Self-congratulatory – pat myself on the back because I’ve done my duty and spent some “quality” time with my Dad?
Guilt – that I didn’t spend enough time with my Dad?
Relief – that if anything happened between now and tomorrow, “at least I had today”
Sadness – that I wish I could have seen the signs earlier and spent less time frustrated and angry and more time patient and understanding?
Fear – that I won’t have anyone who will love and care for me in the same way if anything befalls me?

Did I cry because every time I’m there for my Dad, he says “sorry” for taking up my time, “sorry to disturb you”. I never make my Dad feel guilty and boundaries have to be made clear, but it makes me sad and angry to think why he has to say “sorry” and if others have made him feel like a burden or a bother.

The real reason is, I don’t know why, maybe because of all of the above things, maybe because I hate this fucking life with all it’s unfair, injustice shit it places on us. Maybe I’ve had too much wine (two glasses), “maybe it’s because I’m a Londoner and I love London town…”

I chose today, I chose to spend “quality time” with my Dad because in recent years, “quality time” has meant council visits to get him a home and benefits, hospital visits to find out he has Prostate Cancer.  It has meant finding out accidentally that I have a half-brother but with so many questions that will be left unanswered for my entire lift-time. And more hospital/clinic visits to find out that he has dementia and this is the next step.

Did I choose this life? Did I choose to have these challenges in my life to make my soul a more experienced, wiser being in the next life?  To develop to a Nirvana level in this life? How could I have chosen the pain, the suffering, the guilt, the worry, the stress; how? Because I am sure I would have wanted to be in the ice-cream guilt free zone of wealth, wisdom and ignorance, no?

I know I have this immense capacity to love, to give, to care and energy to encourage, but when I walk away, I am sometimes inconsolable with an undeniable outcome. Why was I never prepared for death or just the pain and endurance that one has to go through with life’s incurable toxins. These are not triggers from my childhood, these are not previous experiences before a certain age, this is fucking real life adulthood and it’s shit.

Do I sound ungrateful? Maybe? I sound fucked off with the cards I have been dealt with and I want to throw my toys out of the pram and rant and rave at how unfair it all is. But as most people I know say “it is what it is”. Fuck those words, it seems cold and calculating, a slap in the face of no mercy or prisoners to be found here. Take it or leave it? And I have to accept the inevitable, fate of destiny.

But fate doesn’t have to be a waiting game, I look to do everything possible to enable, to give advice, to make sure my Dad can do everything in his power, while he is capable to slow the inevitable down. While doing this, I have missed on two years of living life with him, having fun with him, day trips out with him, drinking with him.

Have I been selfish in thinking “Well, I was doing my duty as a daughter, at least I was there when he needed me the most, all the appointments”. Have I let my ego get in the way to think, “I’ve said all I can”, given him opportunities and now I can get on my horse and ride off with the knowledge that “there was nothing more I could have done”. I’m an absolute idiot if I think that.

I love my Dad and I don’t want our last months or years of memories to be sat down explaining to him that he has to think now about his funeral arrangements, his Will and whatever “end of life” endeavours he needs to consider. I want to have fun with my Dad, I want him to have fun with me. I don’t want him to get all stressed with me because I’m always talking about the seriousness of every situation.

Today I took him to three of my favourite special places in North London, spaces that make me feel like home never did, peaceful, a space to think and feel/be creative EZ and Moss. A place that always makes me feel like I’m part of the family Mento, Coffee and Flowers and a place “where everybody knows your name” Oak N4

The roles in life have now reversed, it’s my turn to look after, take responsibility of my Dad.  I’m glad I had today and I need to make sure there are more days like today.

‘The Good Enough Mother’

/ Maria Thomas / Leave a comment

With a background in acting everything I write has music to it, or rather in my head as I write. Cancion De La Noche

I love reading and I don’t ever read enough but there always comes a time when perusing a book from someone you know can make reading that bit more special.  ‘The Good Enough Mother’  was certainly a piece I was looking forward to reading as I hadn’t spoken to the writer, Anoushka Beazley for some years; and was just genuinely excited to see someone who I had crossed paths with doing extremely well!  I think sometimes, the worry is that someone will read/see your creative output and dislike it. But we put ourselves out there, sometimes with our hearts on our sleeves and not only take risks but hope to connect with the reader in some aspect.

The story opens with Drea who becomes a single, non biological parent to Ava over night due to her Teacher boyfriend who runs off with his Research Assistant to live in France. Drea’s character is funny, dark, sarcastic and shows the sad complexities of humanity that reside in all of us. Why did I love this novel, well firstly I could hear Anoushka’s voice, and even though I hadn’t seen or spoken to Anoushka, it was great to hear her voice in Drea. Secondly, the story of Drea has so much heart and made me seriously think of ‘Motherhood’.

I lost my Mum several years ago and it’s still difficult to know she is not here anymore, that I can’t take her shopping, meet up in a coffee shop, have family get togethers, or simply share my life with her. I contemplate whether I will be a ‘Mum’, ‘Mummy’ or ‘Mother one day, to my kids or someone else’s. Do I want to be a Mum? I ask myself “why this has not physicalised?” I blame the notion of not meeting the man who has wanted to have this “lifestyle” with me, but is this fair?  Did I meet him but not clarify my needs? I always said “never say never to kids” when someone asked me, but then some how the cycle of men in my life that I attracted were the guys who could never commit, disliked children maybe because they hadn’t grown up themselves or possess the required emotional maturity,  or had kids already and didn’t want anymore.

As with Drea’s story I could associate with other issues that perhaps prevent us as in ‘I’ from making those clear decisions. Maybe it was never high up on my priority list, maybe I thought it would happen naturally, maybe I didn’t think I would be a good Mum  or be any good at being tied down and didn’t want to repeat the mistakes of my parents. So, “fear” prevented me? Maybe because my parents were so adamant on me having a career and in doing so gravitated towards people who wanted to take rather than share. Maybe my needs became second to their needs?

With main characters in novels, conversations happen in their head which only the audience can hear and identify with. When I started this post I was debating on whether to call it “Conversations in my Head” partly because we all have them and I do try to stem the demonic ones; but this is about how “The Good Enough Mother” stirred emotions and thoughts I have had all of my life. Maybe because my biological clock is ticking, maybe it has ticked? Oh look, there’s one more thing I cannot add to the bucket list but if I could, would I? Probably yes, most definitely yes if there was someone who wanted this with me. But unwittingly I chose and choose the men who do not and that is one of the most painful decisions I live with daily.

Drea’s internal dialogue is utterly insightful, I guess this is why I connect with her. There are reflective moments that made me feel completely broken, the way we compartmentalise so much until we are forced to confront our issues. The mirrored moment is never necessarily with a person or situation but pages in a book, a scene in a film, even down to the most boring of chores can have you crying because something you read in a novel made you think. Denying how we truly feel about our circumstances and who we are, and whom with we can be ourselves. Sometimes, being alone is preferable than being around people who constantly judge you, analyse you or your situation, who offer advice when it’s not needed or asked for – “The fixers”.

Drea deals with her problems internally, and I wonder if this is a symptom of modern life. We feel guilty for sharing our problems, we consider it “dumping”.  We feel a failure if a relationship has broken down, there’s always blame. We feel shame for not being what Society says we should be, in a relationship that leads to marriage, children, financial and domestic security. There’s nothing wrong with wanting them but there’s equally nothing wrong without having them.

The fear is not loneliness or am I settling for second best or wondering if I had made different choices would I be somewhere else? The thoughts are what if there is someone out there who wants to live the life I want to live, should I keep searching? Maybe I do want to be a Mum? Maybe I just want security because I never had it as a child or growing up? Maybe being a Mum will fill the loss of not having one? Maybe I still don’t know and it’s okay to not know especially if you’ve been through the “I thought I’d met the one” phase and they turn out not to be.

Drea wants to be provide for Ava and though there are lots of ways she doesn’t see, in so many ways she does. She’s responsible, she cares, she admits to not being the ‘typical’ parent that gets stuck in with PTA or makes friends with other mothers for the sake of school. But there is something in Ava’s need to belong and be part of something that also resonates with me. Maybe it’s being a Mother, maybe it’s to say I did well, maybe because there is nothing left of me after I have gone and maybe that’s they way it is and should be. Why does their need to be a legacy of Maria Thomas? There doesn’t.

‘The Good Enough Mother’ is definitely about the human condition and the complexities of how our minds work. The trauma of childhood, the confusion within ourselves by not really knowing sometimes who we really are and we come from, our parents/families influence on our lives or non-existent parents/families in our lives. It all seems to boil down to who am I? Who I am can be anything I want it to be, how I live and whom I live it with is my choice as long as I am happy why should it matter? Who put the time clock in my body and do I have to listen to them? Listening to the conversations in my head can be harmful or amazing, and everyday I have to consciously choose to listen to the voice that keeps me going.

Thank you Anoushka, if ever I do become a Mum, I hope I remember like Drea, it’s okay  to fall as long as I remember to pick myself up and carry on.

Pain not hate!

/ Maria Thomas / Leave a comment

I hate how I feel when I hear impending doom, I fear the worse, think the worse, I want to scream at the world, at the gods, at the universe to say why do you fuck with our lives like this, take loved ones away so suddenly, I had no time.

“Are you sitting down, take a deep breath”, and the words flow, the news hits and my head is all giddy from absorbing. I don’t want to create a story in my head, I don’t want to think about my send off music, like a walk on music. I don’t want to hear someone I know is dead!

Yes, I know death exists, we have to all exit one day but why smack me in the face, why punch me in the gut, why queasy and sick, why all the moments that I last spent with them and all the moments I could have spent more. Why make me hate.

Where is my grief, is this it? Is this the sadness, another empty hole that gets bigger with each departure, am I part of the whole or the whole of nothing? Images of my own death, images of a peaceful sleep, no one wants pain. Images of how my loveds ones will react, will I be missed,  will I see them from the other side and at least feel them one last time.

How can I hate death when I don’t know it, feel it or haven’t escaped it, or maybe I do and that’s why my feelings are so prominent. Why do I feel time slipping away, reminded of my age, reminded of memories left behind that I never want to see or meet. Nothing about it makes me feel peaceful, gracious of my time, legacies I wish to leave behind. All it does is make me want to fight it, box it, kick it and rage at it.

Leave me and all the people I love the fuck alone! I accept its fate but fate is far away in a distant future. A future where cryogenics restores us, nanotechnology keeps us a live, that potion keeps us young and healthy forever, I don’t want disease, I don’t want to linger, I don’t want to stop fighting until I come face to face with you, and know it’s my time. Please don’t let it be alone, please don’t let it be tomorrow, please let me say to all the people in my life “I love you. I love you, I love you, I love you!”.