mentalhealth

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.

2021-Tired and worn out

/ Maria Thomas / Leave a comment

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

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

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

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

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

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

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

Comfort zone or Fightzone?

/ Maria Thomas / Leave a comment

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

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

Ahem.

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

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

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

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

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

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

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

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

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

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

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