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.