Family

#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

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.

Hello Mum,

/ Maria Thomas / Leave a comment

Hi Mum,

It’s been over ten years since I physically hugged you, spoke to you and saw you. I can still smell your scent when I smell perfumes, Poison or Givenchy. Even the smell of Frankincense reminds me of the essential oils you use to use in our old house.
I see your face, expressions in people that I meet, reminding me that you are still here. I hear the songs you loved and know that you are near.
I still hear your laughter in my head, I still see the red lipstick you wear, the bright colours of dresses and shirts you would wear. Jeans were never part of your wardrobe and I always admired that the colours you wore suited you every time.
I loved that you would ask friends to make your clothes for you, they were unique like you, as were your headscarves. I remember the gold necklaces, earrings, jewellery you wore, you were never scared to wear them. You were fearless in so many ways and adventurous. You will never know how much of me is you.
I remember your dreams and stories were filled with worry and caution. I wish I had known more about your life in Mauritius and what had really brought you here, what were you leaving behind and how easy it was to let go.
Like many a better life for your children, a new dawn and hope for the future, a home to call yours and a family that were solid. I wish I could tell you how I live my life now, how I hope you would be proud of me, seeing me happy and with a very different life you were part of. I struggle Mum, there are so many things I didn’t expect, so many revelations and expectations. I struggle with not hearing your support and compliments, negativity is a bitter pill to digest, there’s so many side effects.

I remember the day after you died, I heard you call my name so loudly as a whisper in my ear so closely that I had to look around. It was the name you called me by, not my given name. And I remember feeling my heart beat so fast like I had had an electric shock.
I know you are here with me every day and when I really need you, I see you in my dreams. The last dream was not too long ago, and I remember us catching up about what has been happening in the world, us laughing together, and when it came to saying goodbye. We hugged several times before we said goodbye. I could smell your scent of Frankincense, feel your cool, soft cheek next to mine and feel the tears rolling down my face.

Until we next meet.

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.

Things I know to be True

/ Maria Thomas / 7 Comments

There are specific moments in your life that you wish you had someone to share them with and there are several friends, whom on this night, I wish I could have shared this experience. But like with every situation in life some scenarios are to be experienced alone and those memories are the ones that will stay with you forever. 

I watched ‘Things I Know to be True’ by Andrew Bovell at the Lyric Theatre in Hammersmith last Friday, produced by Frantic Assembly. What a great piece of writing! For the first time in a long time I  was moved (well utterly flabbergasted), I was transformed by a shift of emotions and inspired by some brilliantly observed writing about familial life. The play was about an ageing couple, the husband retired, the wife still working as a Nurse with four grown up children. The play opens with the youngest daughter returning home after travelling across Europe in a gap year of self discovery. All of the children, now adults one married, one in a broken relationship and one a city flier are still treated like children, mainly from their Mum. All have varying degrees of bitterness and resentment toward their Mum’s ability to constantly undermine their choices, criticise their personalities and having an insight to see the truth. The Dad, a man that shys away from having a voice and in need of a quiet life. Don’t we all.

https://www.franticassembly.co.uk/productions/things-i-know-to-be-true 

I  recently worked with Frantic Assembly on the Intermediate workshops where Neil Bettles (http://dowhatyouloveforlife.com/blog/2014/07/do-what-you-love-interview-neil-bettles/) Director/Choreographer shared some of the exercises that the company of the show were working on with us, we did some beautiful movements, lifts, hugs that left my soul shouting at me that this is what I should be doing, not stuck in an office all day. Would I ever get bored, no, I love challenges!

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Frantic Assembly – Intermediate workshop

However, I digress. This play left its mark on my heart, on my soul, on me. And I know I am not the only one that walked away from seeing the show feeling like I went through a roller coaster ride of emotions, I’m not the only one that felt like I had been sucker punched in the gut as I could relate to many of those moments when your Mum looks at you and she knows the truth you are attempting to hide from her. Knowing she is right but wishing she was wrong and couldn’t read the miniscule detail of inflections in your voice or how the look in your eye reveals the inner hurt or disappointment you feel. Anyone who has been in that position when parents know how to get to the heart of you and rip you apart with words, whilst you live your life begging for approval inside. But you’re encased with a hardness that becomes your coping mechanism in life, in relationships. Never wanting to turn out like your parents and yet becoming the very essence of what you hate most about what or whom they are. Early on in your teenage life, you made a pact with yourself you would never become them. (Now the play isn’t entirely pessimistic, there is hope). But it is down to the individual to take the steps of change, that journey that only we can make. Only we can explore, learn, grow from and sometimes still don’t know who we are. We are yet to find the person within the shell we look at everyday. The first act took me on this journey and the actors played their parts incredibly accurately that I felt like I was watching members of my family from different periods of my life and to be honest they way the first act left me feeling I couldn’t see where the second act was going.

SPOILER ALERT: Do not read this section if you haven’t seen the play yet!

The second act opened with the truth slowly unfolding for each person, revealing the lies they had hidden behind, a need to be the person they truly are, hoping for acceptance within family life that we long for and so desperately seek. But even the strongest of families have their limits. Mine did. Which is why we seek solace in our friends, who don’t judge us in the same way and care more for our well-being. The climax, which I didn’t see coming (and this is where the play had earned its weight, its gravitas that impacted on me and the audience) is when the one person who always brings everyone together, who fought the hardest because they had the most difficult journey in life. Where the Matriarch of the family worked hard to make ends meet, to ensure her children had the opportunities she didn’t, dies unexpectedly. My heart broke, I could feel the tears welling up uncontrollably with the rest of the audience. Every “Not her” which was uttered on stage opened up the memories of losing my own Mum, it reminded me of the pain we all felt, the anger my Dad had towards everything and everyone. It reminded me of the space that could never be replaced, the “words yet to be spoken”, the lives she left behind. 

I was speechless. This writer came to do a job and he did it. I wanted to share this moment with someone, with my friends I knew who would love the play as much as me. I felt inspired again, moved again and realised what’s missing from my own work is “heart” and that’s what this play has, a lot of heart and soul. The actors were/are incredible to impart such a journey, often I forget why I love acting and this is why. As I walked out of the theatre, I heard a girl behind me say “I want to phone my Mum and tell her everything I just saw”. I thought, it is when you don’t have a Mum to call anymore that’s when a play has done it’s job. It left me with a whirlwind of sentiments and memories from my past and now it was off to impact on someone else’s life.

Not to be too cynical but I do think, is it me being dramatic, is it the personal journey I am on in life, is this what resonates with me at this particular time? What is it? Why? Who knows, it’s an individual journey for everyone and things I know to be true is that no matter how long we have on this earth, try to not take your eyes off the road.

For a moment

/ Maria Thomas / Leave a comment

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

/ Maria Thomas / 2 Comments

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…

/ Maria Thomas / Leave a comment

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