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.