Family

Who am I and where/who is my tribe?

/ Maria Thomas / Leave a comment

Written 10.9.2017 published 14.12.2025

Once a year I hope to read a good book, interesting maybe, a page turner if possible but when I read one that profoundly moves me then that’s when I get really excited and perplexed all at the same time. I recently read ‘Tribe’ by Sebastian Junger but prior to this I had listened to a number of podcasts by Daniel Strauss, Raspberry Ape Episode 27 that had talked about ‘Tribe”. I find myself listening to more podcasts this year mainly hosted by men and conversations on BJJ, MMA, the mindset of celebrities, scientific research on reishi, lion’s mane, gut ad more; I was intrigued to hear continual conversations about where we belong. I guess you take it for granted you know where you’re from, familial life, heritage, ethinicity. I read a quote today that said “Every next level of your life will demand a different you”, now that is true. I am not the same person I was 3 years ago, even 10 years ago but is that because my “tribe” changes and therefore I change? Or is it because I change depending on who I’m with, partner, circumstances, various friends, family, work?

I looked up the word “Tribe” just to truly understand in my mind what this word actually means. Independently, I would say it was a “label” that defines a group of people who travel, live, grow up together, share experiences and are nomads. There is something historical about the word as if it should be extinct and we refer to it in the history books.  But I know how modern society loves to label so the label has stuck to differentiate us rather than positively define us.

The general meaning I found online from a few dictionaries was “a social division in a traditional society consisting of families or communities…” Wikipedia described a tribe as “dependent on their land for their livelihood, who are largely self-sufficient, and not integrated into the national society”. (Funny, I thought a tribe would be it’s own society?).

Does the word tribe make us ask the existential question, “who am I if I don’t have a tribe and where do I fit in if at all?” The book certainly did for me, Sebastian discusses being among soldiers of war and that feeling of safety, everyone rallying around you, this stranger will die for me and will die to protect me. The only time I sense this is with “family”. I have always believed this is how family feel about one another, but being an adult I’m not so sure if this is true? The microcosm is never a reflection of the macrocosm and that’s when the struggle begins.

So, thinking back on a group that is self-suffient, dependent on the land and living by your values within a group that has chosen it and decided to live their life by it sounds great, right? Then why can’t we be happy without the excesses in our lives, without the luxuries, without the choices. We have accepted capitalism and consumerism to become a way of life, a way of defining ourselves over others, a way of measuring our successes and failures. Who says it’s a failure to oppose that lifestyle and choose a different lifestyle. We analyse celebrity exposure as a way of seeing vast amounts of wealth that cannot equate to personal happiness or satisfaction. And I asked myself to answer some of these questions, I need to ask in all of this who is my tribe? Because the question came from a podcast discussing BJJ and the bond you build on the mats, I looked ay my gym buddy tribes. I have a boxing tribe, a Ladies that Lift tribe, friends, family all that I would call tribes. The problem is I felt confused, l really couldn’t tell you where I am from, a part of my ancestral tribe it unknown to me. I know I have Egyptian and Mauritian blood in me, but could I tell you about my grandparents or there parents, no.

My tribe are what close family I have left and that consists of seven people, how do I define myself in the world with such a small number? do I need to? I do define myself by my work, my friends, the people I socialise with, my partner because they have contributed to who I am. And who I am is no longer definable by heritage, generations of the past, environmental, sociological or anthropological past but who I am in the here and now. But my DNA can tell me who I was related to, my gene cells will define my predictive behaviour based on past generations, my medical history can be deduced from my ancestors but in the 21st Century I do not think of who I am defined by history but by my tribe and my tribe changes with time.

Today I ask again who am I and who, where are my tribe? My Dad shell shocked me last year with telling me he was married and still is and that I have a half brother. Today I met my brother and questioned my existence as to who am I? My identity, my name, being female, my role in the family, was I grateful I got to spend more years with my strict, religious, over protective father or now knowing his fear of being an illegal immigrant for so long explains why he was such a controlling man. I never knew he was a muslim and I never knew he was married. In fact, there’s a lot I don’t know about him but maybe that is “generational thing”. So many secrets, so many lies, one wishes to forget so you do now have to confirm or affirm which is which especially if you do not remember.

What moved me the most in ‘Tribe’ was the loss soldiers felt when returning to society. How do we as a Society comprehend what those who train in the skills required to save lives and develop whatever it takes physically, mentally, visually and psychologically to deal with trauma; I cannot fathom it. I cannot imagine it, I am in awe of it. I find writing incredibly cathartic and everyone has a story to tell. I am sure my history would be a 12 boxset season on Netflix. What also moved me, was the question “what am I doing to make a difference in the world?”. Am I procrastinating and over thinking, should I be podcasting, questioning, discussing global issues and how we could change them. Who am I that someone will listen, do I know enough, will I sound stupid? But that’s insecurity talking and that is social conditioning from fear. If we could identify everything single habit, conditioning, constructs, victorian attitudes, values and listen to an honesty from within, this world would be such a different place.

Post Grief

/ Maria Thomas / Leave a comment
Maria - daughter, brown woman with blonde highlights in hair leaning her head on dad's right shoulder. Dad is a brown man in his 80s with a cream shirt on with brown collars.

Autumn has truly arrived with nature transitioning from light to dark, the warm breath of the breeze on our skins, the beautiful red and yellow leaves strewn on the pavements reminding me of the cycle of decay and death. I am reminded of this time last year and not knowing how long I would have with dad. I remember bringing a red leaf and giving it to him, an internal sign, a moment of how I would not see him through another winter.
This pre-winter grief has lasted for years in different stages, and over seasons and cycles. My heart is heavy with loss and I know I am not the only person who is grieving and has lost this year. So many friends have lost a loved one, so many have reached out to empathise, to remember and for those who are going through it anew. I am lost for words. They are recycled and I wish I could offer new ones.
I am still going through the following and I know its because, I could not process these at the time.

Guilt

No one tells you that once all the services that were in place for your dad stops, there is no service that continues for you bar one, therapy which I pay for. Whom do you turn to when society and its structures are set up for you to deal with grief in two weeks when I have been dealing with it for eight years.
I rang Admiral Nurses after dad died to say thank you, and had a lovely conversation on the phone to a nurse but I felt guilty that I was taking up someone else’s space.
Guilt never ends, it seeps through at different moments as the memories come and go over time. All the arguments I ever had, pre and post knowing the diagnosis of dementia. All the times I never stayed with dad, as I worked long hours, or made up for working late due to being in hospital, the guilt of not working enough, of not being there for others, of not being there for myself or my husband. Guilt of what I should have done, or should have said in defence, of not being strong enough or standing up for myself enough.
Guilt is an ugly voice, it’s the internal voice of shame, it’s sharp edges prods and pokes you into self-loathing and insecurity. Guilt stops you from sleeping at night, it is a constant replay over moments, and scenarios, and ‘what ifs’. Where do I feel it, in my stomach, chocking my throat, destabilising my senses and critically analysing my words. I am shockingly drained and tired from the constant voices of guilt holding my ever faithful friend – Shame.

Shame

The voice of others or myself – although this is unique to everyone, I am sure. Shame talks to you about duty, dutiful daughter, you are the carer, what you should do because you are his and now it’s your time to give back. Shame comes from the conversations, both from people who know you and who don’t know you, from family, friends and from services. No one really believes they are shaming you because shame shows up as advice, as words of consolation and experience. I put shame in a box, i compartmentalised it until I was ready to face it, and yes that small ‘i’ is because i feel small.
Where do I feel shame in my body? In my shoulders, neck, lower back. It’s the weight I carry, not only of myself but of others and their expectations of me, of what is expected as a daughter as a carer. I never really understood what care meant in relation to gender and I now look back and realise how society’s expectations on me drained me of me.
Shame made me angry, it fires up the rage in me, it made me tough and resilient, distant, cold, numb when I shouldn’t, couldn’t, want to be those parts of me that rob me of my humanity, my joy. It wasn’t until a ‘dementia navigator’ asked me how I was and vulnerability showed itself. I cried, no I sobbed. No one had asked me how i was doing. I hadn’t asked me how i was doing in a long time, because gradually there was no i. Shame and guilt make you feel selfish for even thinking about you. It uncovers vulnerability.
My body has never been the same these last eight years, it’s older, slower, bigger, bulgier and I look different. My body, my face has reflected the tiredness, the weight, the heaviness of shame. Shame has shaped, manipulated, whispered dark thoughts in my soul, which has echoed through my body. If I could give my therapist an award, I would. The space for my shame to sit in, is there, contemplative and contained.

Vulnerability

Vulnerability has shaken my core but I had to control being vulnerable outside, to the world of healthcare professionals, whilst internally or at home I was and still am a vulnerable mess. I had wrapped vulnerability in cast iron, seriousness, arming myself with knowledge and questions, and protecting my dad with a fierceness that I hadn’t with my mum. How could I be vulnerable in any situation with social services, GPs, oncologists, hospitals, NHS services – all of the appointments and conversations were about knowing about dad’s health. I had to be strong, be in control, look the part of the dutiful daughter, not the angry, brown woman raging inside at losing my dad. Having to deal with all of the changes, the subtle ones and the slap you in the face obvious ones. I had to stay calm and bite my tongue at every turn when I was faced with ego, condescending tones, when services were not given freely to me, when I was made to ask and ask again. When I had to tell a number of different doctors, nurses what the situation was over and over, pleading for care to be in place, a service to be given. Vulnerability has made me sensitive. Sensitive to energy around me, peoples energy/vibe. Where do I feel it in my body, in my gut. Vulnerability has stoked the fire in me, anger and rage.

Rage and pain

This last year I have raged inside, my patience is a thin veil of ‘fuck off and leave me alone’ – alone is how I feel. Is it a feeling? Yes, but its more than that, it’s physical. It’s – I want to punch and kick a bag until I drop, it’s rain on my face along with my tears, it’s being on the bus and passing the care home with tears streaming down my face. It’s sitting alone in my living room and looking at the images of my dad and mum and knowing I can no longer call them or see them or go round to theirs for dinner. Rage is hot, cold, light, dark, being alone or surrounded by people. It is everything all at once. It is the eight months of trying to get home care from social services, it’s the carers who didn’t think outside the box, it’s the doctors who made the decision to prescribe an anti-psychotic instead of calling me to be with dad, it’s the matron who won’t listen, who dismisses and you are silenced and waves you away. It’s the doctors who won’t take your side when they see injustice and let you stand alone, it’s the doctor who tells you there’s nothing more they can do and leaves you with no hope. It’s the doctor who has made up their mind about what treatment will start without consultation and questions your research. It’s the services that ask why can’t you bring your dad to this activity when they already know you work full-time and offer no other solutions. It’s the people around who bring sweet food knowing his mood will be accelerated but they don’t have to deal with the aftermath of shouting, throwing food around and horrible words. It’s the punchbag you have had to be and accept because in not doing so may have been detrimental to dad. It is the smile on my face, the words when I write, the vows he didn’t hear, the wedding he didn’t see. I feel rage and hurt all at once and sits in the centre of my chest, heavy and raw every day.
It is the vitriol I feel toward me and it’s hard to talk about it, it’s hard to define it sometimes, it’s hard not to quietly walk away from everything and everyone. Even the closest do not understand because trauma is happening everywhere, to close to home, how much capacity do we have for ourselves and each other? Very little, if any at all… and on some days when it’s really quiet, I can hear it and I sit with it, hope.

Hope


Hope offers me a new life, a new vision, a different energy. It offers me a gratitude for a new life and choices that are mine to make me happy. Hope for the kindness to myself. Can I see the kindness of hope, the small steps that allow me to lift myself out of grief? Can the emptiness be filled? How can I ever be happy knowing that my parents are no longer there to see and share in my joy, in my journey of life. Was I that naive to think that they would live forever? No, but I hoped they would live to see more. I miss holding my dad’s hand and it is so raw to think today will be one year since we said goodbye. Hope is my siblings, my niece and the next generation. Is hope love? In many ways, yes and in some ways no. I hope that I will love me full and unconditionally and that might heal the memories of the past. Hope is my guide today and always.

Tides of time – heal me

Seek not my body in the past moments of joy and celebrations
Seek my soul’s divine path of forgiveness and knowing
Knowledge has held my hand and humanity has been key to its centre
Feel the words of ownership whip itself on my skin, sowing the seeds
of trauma

Patient centred care – what does that mean? Listening, giving space
To a voice otherwise marginalised, labelled, troublemaker, difficult
Advocacy for men, but what about support for women?
Regimented rules dictate a system so old, so cold sometimes, so distant
Distrusting state and healthcare that cares not for some and only others

Others that are not ‘othered’ but those elite, wealthier clients,
Friends, close knit communities, side stepping those who need care,
depend on care, medicine, welfare of those systems apparently,
in place to care, to share, to save lives and make people better.

In sickness and health do state do us part.

Grief – What does it look like?

/ Maria Thomas / Leave a comment

It’s four weeks today since dad left us and how does the world look? Lonely, hollow, in a daze. People are talking and I’ve zoned out, or I’m exhausted or I’ve forgotten what they have said. Currently, silence is my friend. Coming home after work has been difficult as some days I would usually go straight to see dad. I realise how much I am holding in and I cry when I get home or on the way home.

It’s hard to be honest at work as to why you want to leave work, to go and speak to your therapist but there’s no way around explaining why you need the time, it isn’t a given. Equally I am grateful that work understand and have given me the time off. 

I’m starting to feel anger towards all sorts of things, little triggers. I feel irritated by the smallest things and at the same time I know they are small inconsequential moments. I am fighting the urge to allow myself to become irritated by people and moments and I know this is not me. I am justifying, reflecting within myself, having conversations over again within to make sure what I am thinking is actually from a genuine place or from somewhere else.

I told my therapist recently I understand the light and the dark can exist all at once and that’s okay. Probably the biggest take home from her since I started having therapy. The light and the dark feels deeply vast and expanse. Although the darkness is more attractive and can feel comfortable as I have been there growing up and through moments of my life.

I am getting married next year and I had two scenarios in my head, either see my dad before I got married or see him the day before.  I honestly thought he would be with me beyond 90 year which he would have been in April. How could I have been in denial for months. I weep and sigh, I thought I had more time. In reality I had the best of times I could have had under the circumstances. 

One of my closest friends spoke to me the other day, she was the one person who checked in on my mum when she was admitted to hospital on various occasions and when she had lung cancer. She said “you have all this time to adjust to, you spent years looking after your dad”. I don’t think that has completely sunk in yet.

I think of all the things my parents didn’t get a chance to see but I remember all the things they experienced with me during their lifetime. There was something about wanting to be the first person to obtain a degree, the first person to get married in a western way. I wanted to make my parents proud and I know when growing up, nothing felt like it was good enough for my dad. As an adult and a reflective person, I know my parents came from their own lack of “enoughness” from their own parents and their own belief of what they hoped to achieve in life. I was a “people pleaser” for my parents as I wanted them to be pleased and happy with my achievements. There were many rebellious moments where I couldn’t give a f@@k and my parents didn’t speak to me. Ahh those teenage years but you have to go through them in order to understand or try to.

Poem
Hold my hand and tell me that one day I will see you again
Not on the shores of the sea, in the cold and grey
Not in the darkness and seeking the light
But on a bench where we sat talking, laughing, walking together

We listened to the birds, we watch the squirrels ferrying for nuts, the sky held a calm
We smelled the rosemary and the mint together, we held the apples from the garden
We sat on the bench and enjoyed summer days
I miss the stillness, to be or not to be moments, the smiles, the pain, the loss

I hear your voice still, I hear your laughter in my heart, I see your struggles
They were not nice, they were angry, fearful, lost in a world of non-sense
A world where we know this sense, this hollowness, this part of you or me
That dissolves into nothingness

The tension in my stomach has not left, the silence of my phone disturbs me
I miss your voice calling me, I know you’re with me. 
Dad – I cannot do this again, the caring, the arguing, the understanding, the loss 
at every stage. I cannot find the patience, the empathy, the many stages, the hurt,
the grief.

I ache, I hurt.

In Search of Myself

/ Maria Thomas / Leave a comment

For a long time I’ve been trying to figure out how to stay in touch with my intuition and guidance system. I feel blessed to meet people who want to talk about their own spirituality and will share what gifts they hold. Sometimes, I feel so vulnerable and such an open book even if I don’t share much. I can feel that I am being read, or at least I feel like I am. Notice the difference between the feeling of being “read” and the feeling of being “judged”. I used to feel judged but that was/is my own trigger that has been brought to the forefront of my own fears.

I am also aware there are times when I feel in sync with the universe and other times I allow myself to be consumed by the noise and be distracted by things that should not be within my framework of goals. And what exactly is my framework of goals? I still don’t know. I asked myself the other day “when did I last feel alive and one with the universe?”. It was a looooonnng time ago. There are always moments that I feel in sync but now they feel like moments of continual momentum. Not in the motion/active way but a spiritual inertia.

I am finding comfort in being able to speak about my spiritual, intuitive side as more people are discussing their own. I am always in awe of the gifts that people have to hear, feel and see clearly spirit or happenings. And living in a physical world does carry baggage of that limited, trapped mindset and how everything needs to be scientifically proved or have validity in some way. Not everything has to be scientifically proved, does it? There are many that believe in a god, can we prove this existence scientifically or is this faith of something more?

I am a curious being and like to question everything within reason, not necessarily for explanations but for perspectives. My mum delved into the world of faith-healing, fortune-telling, she read cards, palms and it fascinated me but also scared me.

At present I seeking more of an understanding of how I work, my own blocks; and to allow life to unfold by deeply trusting myself and my guidance system. “Guidance system” – what does this mean? An inner voice, a sense of timing, energy and space. Also, trusting the universe has my back. Does this sound all woo woo, maybe it is but what if it isn’t. Why do people say things like “It felt like someone walked over my grave?” or “I feel like I’m having de ja vu”.
I am so grateful for many things and at this particular crunch point it is helping me with utter grief that I feel daily.

.

My dad has lived with dementia and prostate cancer for the last 7-8 years and it has been the most difficult, traumatic time of my life. I can’t imagine what he is going through, how the neural pathways are disconnecting his memories, and closing off parts of who he was as a fully cognitive man. Am I denying death or am I seeking answers that will make it more acceptable?

I am conflicted, I am overwhelmed, I am cherishing all the moments I speak with him, hold his hand, hug him, see him smile because there are too many times the anger settles in. I feel he is in pain, physically, he is also probably angry to be losing his identity, basic functions of the things he used to know and do so well, so independently. He is losing himself in the physical world. How and why does this happen?

One of the things I recently learned about me, was that I was playing the victim, well at least saying something in a way to evoke sympathy and to make myself feel better, to support the fact that “I’m doing a good job as a dutiful daughter” by caring for him. I know that I have lived with a lot of guilt, shame, even hatred toward myself for not being a better daughter or a better person, for arguing with him before and after all of his diagnoses, for feeling angry for many unanswered questions, that his past was hidden from me, for not being able to say what I wanted to say or ask.

Along this journey for the last 8 years, I have learned to love myself more, take credit for fighting for dad and making sure he has a good quality of life, to uphold his dignity when needed and know that I made a choice to be there. No sad stories anymore but acknowledge the trying times, the hard times and no capacity times.

I hold myself through this time. I love myself along this path. I shine through even though another piece of me is dying, his memories are my memories. His loss is my loss. This last part of the journey has no words to describe. I’m still here. I’m making the best of the life I have.

I wrote the above during the week of 21st October 2024, I am now at 15 December 2024.

In the middle of all of this I joined an online event called ‘Alive’ by my friend Lois Tucker. She has since run a course called ‘Clarity’ which I knew I had to join as I was in the middle of grief.

My dad passed away on 26 November 2024, my sister and I were with him to see him leave peacefully. I was glad to be present and say goodbye in-person but it hurts and is one of the most difficult experiences to go through. I am now parentless, an “orphan” as a few described. Dad was buried on 28 November in accordance with his Muslim faith.

How am I? I’m not sure? I feel in limbo, I feel like I’ve grieved a lot already and I feel that I haven’t. I feel alright, I feel at peace knowing dad is at peace. I feel irritated, angry on occasions. I’m exhausted. I’ve gone back to work and welcome the distraction but could do with time off. I wish you could take paid leave for a month or so like maternity leave. My body has begun to untie itself and I can feel the aches and pains, I hadn’t before. I feel a slow decompression.

Everything has felt so surreal, in some ways I want to close my eyes and awake seeing my parents; having the chance to hug them again and tell them I love them. The transition from physical world to spiritual world is tough. I wanna hold my dad’s hand and tell him I love him and give him a cuddle. I want to feel the cool skin of my mum’s arm and tell her I love her and hold her close.

Some of my memories torture me like a time I came straight from work to the care home to see my dad before he had got into bed. I arrive just before 6pm and he called my name, Mya. Mya has always been mum and dad’s nickname for me, dad had the biggest smile on his face, I’d open the curtains and he was so happy to see me. We were talking away for the hour I was there and normally I take a photo of dad and me when I can, when he allows, allowed me to. I keep telling myself I should have captured that moment.
When I told my partner this recently, he said “if I had then I wouldn’t have been present to enjoy the moment in the way that I did”. He’s right. I had many moments with dad and feel so blessed I was able to.

2023 – Where am I?

/ Maria Thomas / Leave a comment

Mid-September 2023
This past week has been a rollercoaster ride of a journey. I cannot find the words. I am lost in turmoil, trauma, realisations and a grief that sits with me every day.
I am the child who has become the parent, I am the sole child, the youngest child who has sole responsibility. I am unique in this life with a lens of how I see and view dementia effecting my Dad. I don’t know how I feel anymore or what I feel.
Sometimes, I listen to others to remind myself what it is to feel empathy, what their journey is because in so many ways I feel like I have to numb the hurt to get through what is happening right in front of me.
I am losing my Dad, and I want to cry uncontrollably, I want to scream at the world for the way his mind is being played with, manipulated in past and present. Pensive with trauma, and observing the things he can remember, those things that are his, his space, his environment, his home.
I no longer feel the duties of a daughter but the sadness of loss. I feel like I am losing another part of myself, the loss of me whilst losing him and nothing can take away that feeling.

I have had so many kind messages during this time, but I cannot speak. I cannot answer. My capacity has been reached. How do I explain this without explaining. How can I be me and not me right now? How can I be happy when I feel alone?

My therapist and I have talked about how the light and the dark exists at the same time, and it’s okay to feel the conflict of both. It is normal. I, sometimes feel like “I am a good person” but equally I want to tell some people to f**k off. Not friends or family but people who lack that empathy, who don’t understand what it’s like to have dementia. Who think they know but haven’t lived with it, never seen it up close, know it personally. Is it a generational mentality? Is it a lack of empathy? Is it a lack of care and compassion?

I have seen trauma, I have seen the darkness this week and not my own. I don’t know how I have become resilient, may be I had the armour growing up to protect myself but equally I feel exhausted by everything, everywhere, all at once. I am going to make one of the hardest choices of my life and it feels shit, selfish but necessary. My heart is on the floor and I am trying to scrap pieces of it up to make the whole again. I feel like every step is a fight, every service that I am dealing with for my Dad is broken, disconnected, refusing to take responsibility, passing it over to someone else. These are the effects of a government who have sold off and privatised our NHS.
Dementia accelerated is angry, cold, disengaged, no reasoning, childish, teenager rants, emotionless, full of expletives and confrontational. At least the strand that I have to deal with, what this week has been like.

Am I coping? I think so?

Have I done anything for me? Eat chocolate. No exercise, which helps me. No work, as it has been a wave that I have had to ride.
Am I grateful? Yes, for an understanding work place and words of support and advice from doctors I know personally? For my partner. For the friends who have reached out.
I remind myself I’m a step-mum. I remind myself I act. I am worthy, I am enough. I remind myself that I am doing my best and that is all I can do. Does it make me stronger? I don’t know.

For the first time in my life since Mum died, I have not been able to focus on anything else but Dad. For the first time I noticed the triggers from possible past traumas and they sat with me, they sit with me. I have to stop myself from feeling guilty because that part of me says “could I have done more?” and I know there’s no more I could give or do. And when you think no more could happen, more comes along to test you.

December 2023
Christmas is over and a new year is almost here. I think of the journey these past three months, almost a quarter of a year and I have finally had to make a decision I thought I wouldn’t have to make. Moving Dad into a home. His care needs are greater, my time with him has been demanded and the last hospital visit still has me reeling with anger and dismay. A different hospital encountered with a different response to dementia and trauma. I am still fighting the shock that administering an anti-psychotic to a man with dementia whatever the dosage, and not communicating with the NOK was a priority than reading the patient’s history or records.

I draw closer to another year without Mum and wonder how have I become a parent to my parent? Mixed emotions have consumed me since April, no time to breathe, to absorb, to process moment to moment. How to make time for me, where do I find the time? Having my coffee in the morning, brushing my teeth, going to the toilet??? I am grateful for counselling, I am grateful for trying to put boundaries in place and acknowledging how much energy I have for myself and others? Overwhelm, over-thinking- over wrought with 2023. I keep telling myself it’s ok, everything is okay but am I okay?

I notice the tiredness much more, I notice the weight gain much more, I have stopped regular gym going. I understand that one doesn’t let oneself go, you prioritise where the energy has to go, where the focus needs to be. Sometimes it is a waiting game, sometimes you pause and it feels like weeks and months. I tell myself it’s okay, but is it? I have high standards but when you are on the edge of being an empty vessel that cannot refill or refuel what do you do? You keep going because there is no choice.
I cannot bear to listen to the words of unwanted advice or comfort. I am fed up. I am at my limit. I don’t want to hear anything that anyone has to say unless I ask. I just want a hug, I want to feel, I am numb with pain with hurt with anger. I am numbing myself, my soul into the unfeeling just to cope. I have the barriers of my childhood youth raised high protecting me from my emotions, protecting me from the fuckwits. I feel the negativity of youth which I attempting to embrace rather than despise and coax the inner child into warms words and arms of embrace. “Everything will be okay”. I wonder which side of the family the air of “control” came from. I know where and unpicking and unpacking is effin hard.

I want to lay on the cold grass and sink into the earth. I want to drink the loveliest of red wines and not feel woozy or slightly drunk. I want, I want, I want. Where is the gratitude, I hear myself ask? Where is the positive, upbeat Maria who I use to know? Lost in a lonely shell especially this time of year. I am reminded how lonely I feel, and do we choose this loneliness or is it just so? Am I depressed or am I mourning the loss in its everyday form reminding me I will have to empty another home because this is life. I end 2023 exhausted, internally broken and full of anxiety and self-doubt but I enter 2024 with hope. Hope, that life will be different and I will find who I am, once again in the world without the guilt of remorse.

One of my affirmations is “I intend to have fun”…sigh…one day, right.

Blessings for an amazing 2024 for all of us. Thank you if you made it thus far.

#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.