#NationalCarersWeek – Day 3 & 4 – Strategies & Advice

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

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

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.

A Writer’s lover…

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.

For a moment

For a moment intuition kicked in, the reality I will never be a part

of your blood, life or family

for a moment I’m not a part

of your life, your circle, your photos

for this moment I do not exist

I am, I was and still a memory, a shell of existence

for a moment I’m empty, tired, numb, fucked off

for a moment, my soul is crying, dying fighting the truth, the lie,

the made up scene in my head

for a moment my world shattered, crumbled, died or

did I face the undeniable inconsolable truth

the truth thats always been there, my fears

that ensnare, that encapsulate

that slaughter, that stabs the heart of me

me, who am I in the picture, no one, this picture

of family that stands, no one, that’s happy, that exists without me

me, who is me. No one, nothing of importance. Noted, that’s me.

 

Mia’s Fears

Coach asked me today why I was holding back, what is it I feared?

“Losing. It’s simple I don’t wanna lose. Why would  I train this hard and for so long if all I’m gonna do is lose”.  Stupid question, he must’ve seen the thoughts cross my face cos then he said  “Mia, don’t be afraid of your potential”. In my head I was thinking “what the fuck” and he must have read that too because I didn’t have a chance to reply.

“Just think about it”. And we were back into training.

So, I’m thinking about it. Why am I holding back? I know I can be the best so what’s up with me? Then…all these memories came flooding into my head, moments from my life where I had failed. Failed to speak up for myself, failed to help or step in, failed to be a fighter, failed to make my brother proud and that was it.

Everything went in slow motion, and I’m crying. Stupid uncontrollable crying in the street, and I’m searching every pocket to find a tissue, a used one even and then I use my sleeve. Come on Mia you’re 27 and you’re crying over stupidness. Fuck this shit, the only person you have to make proud is yourself, now get it together and fight. Fight to win.

Daddy dearest…

There are some days where as a stubborn person in life means you do not learn anything but your own opinions and hear the sound of your own voice. Then there are times where you realise how much you learn from listening to yourself and the experiences you’ve had. But no matter how hard I try to keep an open mind about my own experiences and my Dads, the generational gap cannot change his way of thinking; it can merely bend it to a degree. But that degree is not a win on my part that he came round to my perspective on any thoughts I put across. It merely meant that in a second he heard what I said and will choose to keep it, ponder on it or has already forgotten it.
What have I learned in this process is that my POV is mine alone and attempting to alter, change, offer a wider perspective to my Dad is not lost, not wasted and certainly not a defeat of me trying to change his/ the world; but that at least I connected with him. At least we laughed and at least we shared that time together. We talked a lot about “destiny” and “what if” moments, the last part of the conversation was “what if I won the lottery tomorrow, that would be my destiny” and I argued this was a “what if moment rather than destiny, and was based on statistical facts that you would not win”. Ultimately, there are odds that the outcome could go one way or the other but in the end who cares whose right and whose wrong.
“What if” I had the opportunity to live life again and make different choices. I wouldn’t choose to do this moment any differently as I know these moments will be far and few between.

I love you Dad

Upstart – Mia’s sprint

My time of the morning, cool crisp wind in my face. No fucker bothering me or pushing me to challenge myself.  A few familiar faces pass, we do what we always do, jog by without acknowledgement. Sunday, my day, my time. Church day, their time. He’s praying for me,  gotta push my brother outta my head. Mia – this is your time!

Tune – “you better lose yourself in the music, the moment, you own it…”

I wanna try some MMA, soon. The fight will be over soon. “Mia, focus. This isn’t just any fight, this is a fight that could change your career, take you to another level”. Do I care? Really, do I? Course, I wanna win…come on Mia no complaining. “You’re lucky, you’re good”. So, what I know I’m good. Don’t get arrogant, why fucking not! I’m not saying I’m the best, but I know I can be.

Fucking doooog, can’t you see I’m running. Why stop here, you fucking little shit! “Sorry”, I wanna kick your ass right now and your fucking stupid little yappy gremlin. Ahhh my knee. Breathe, its fucking hurting, not another injury. “Fucking dog, put it on a leash on next time”. My opponent is staring at me with those disapproving but up for the challenge eyes, my pride already on the floor, walk away Mia, walk away…aaaaaahrrrrhhhhhhh!

Maria thanks the Eminem ‘Lose yourself’ lyrics. Great track to work out to!

Upstart

‘Upstart’ is the name of my short film, it’s about a female boxer who lives in the shadow of her brother’s success as a former boxer. Mia is seeking to find who she is and where she fits in the world.

Who am I? Well, I am Maria Thomas. I’m an Actress, Producer, Writer and a lot more like most people. I have so much passion about life, learning new things, discovering new places, listening to new people even the ones that annoy you. You can find my Producer page on Facebook, under Maria Thomas and I will shortly begin a page on ‘Upstart’.

‘Upstart’ is written, co-produced, co-directed and starring me. If you going to do a first project, you may as well do it all.

How did this idea come about? I did a play about a girl called ‘Cutter’, which is also the title of the piece by Sean Burn. Cutter begins the play at the age of 8 and by the end is 18yrs. During the play she confronts bullying, racism, self-harm, loss of her Mother and then during the play the loss of her Grand Father. The piece is about a journey of self discovery and independence which is why I was drawn to writing a short film with similar themes.

This is the adult version and finally deciding on the lead character’s name Mia, I am about to blog about her journey week to week, maybe more but in character. So this is where Maria ends and Mia’s journey begins.

Today is jus one of those days, it’s naggin me, this pain in my fucking hand. Fucking injuries jus won’t go away. I wanna go home, I just want to say “fuck off, I’m done” but I know his gonna gimme that look. Arhhh….just don’t look at me like that, I don’t need a guilt trip, I don’t need the talk, I need a f…king night off. He doesn’t have to stay every night…but he does, perfecting his techniques, his moves, waiting for his moment, not mine.  I don’t wanna be a fucking puppet…

“4 jabs, come on, stop thinking. Bam Bam Bam Bam. 8 jabs, Bam…”

I’m so fucking tired and it shows. I see his disappointment, he would not have given up, he would not have shown weakness. I muster whatever energy I have, “again, come on again”, I say and I see his fired energy ignited. Sometimes…I hate you brother.

It’s a start into the mind of Mia and the back story to the film. Thank you for reading and maybe follow the journey in future.

Half full, half empty

Hand on heart, no words escape my lips,

the truth of a past I cannot relive.

Moments lost, memories gained

an injustice to the memories unnamed.

Where are you now? Who, what, how

did I get here, I know not this time

this place, this home, my space.

Cloudy, unrecognisable since you’ve left

the hole in my heart is still bereft.