Post apocalyptic times…

Currently we are living through a pandemic, Black Lives Matter has moved prominently to the forefront of our times, global politics has been a daily conversation as much as our work talk and now we are living through a “new normal”.
When lockdown 2020 happened on 23 March, I was still floating from my month’s holiday in Thailand and dreaming of my next holiday, but everything stopped. Everything apart from my day job which got busier, anyone considered a “key worker” their life continued, adapted, and a sprinkle of added pressure and expectation.

Technology was at the top of the list, how do we expand on it, transfer communication on it and we had a Zoom boom. I had heard of Zoom before it exploded into what it is has become today 30 more million users and added online security. I have suddenly become a whizz at online meetings, muting people, trouble shooting and a video editor in the space of three months.

I started to envy those on furlough as having some paid time off sounds great, just think of all the things I could catch up on and all the things I could do. Realistically those “things” were domestic, cleaning, renovating and letter writing. However, in a way I am glad to have been working, there’s something about structure that helps me plan and oversee my days and weeks.

I’ve heard many people say it will be a time to “reflect, slow down and enjoy time with loved ones”. Yes and no. It has been an awful time of disruption for my Dad who has dementia, his routine has been completely wiped, his restriction of freedom has come at a cost, my relationship with him has been wrought with friction. He doesn’t understand that I’m not the one making the decisions on his life but I am carrying them out and therefore I get the brunt of the disgruntled anger. I am deciphering if he’s having a bad day, or he just hasn’t eaten/drank enough or if he’s genuinely having a bad day. 
I am spent, my energy is low, my mind and body are tired from working, running over to make sure he’s okay, calling to make sure he’s eating and drinking and managing life as a step-mum, a partner and all these other labels I/society put on me. I have had more internal grumbles than usual, and my outlets which has been going to the gym, Fightzone or Islington Boxing Club are closed. Pubs will open on the 4th July but gyms are closed. Sigh. This government makes me fucking angry. Is healthcare a priority or is tax on alcohol a priority?

This has also been a time of reflection in many ways, I’ll start with ’21 Days of Abundance’ by Deepak Chopra. I was invited to commit to this and I really loved the journey of self-help. It’s not an easy journey as there are aspects of my Mum I was encouraged to answer and think about the people who really inspire and lift me up; and the ultimate question “what are you doing with your life”, not in those words but I know this is why I took the time and it’s always good to reassess where when one is at during times of difficulty or ease.

I have loads of ideas I would love to execute, lots of knowledge I would love to share and there’s sometimes something inside that stops me. Procrastination, scared, tiredness, excuses that I can always start tomorrow or am I waiting for the right moment? There is no right moment, there is no time like the present and I have to believe in myself that I can do it. But I am tired and there’s the excuse. So, how do I change this? I listened to Brene Brown talk recently where she says “sobriety is your superpower”. Do I drink that much, no but I do drink, could I plan my lifestyle better as much as I plan my work or extra hobbies, yes!

What’s really important to me? When my Mum died over ten years now, I asked myself this question. The answer was live life to the full. I made mistakes and I didn’t really live life to the full. However, Deepak talks about the “space between thoughts”. There is a voice that speaks to me and to us all, it’s that intuitive one that tells us “yes, go for it” or “no, don’t do it”. It tells us many things but we either silence or ignore it. I am getting better at listening to it and much of the time to hear it, I have to “let go”.

Now “letting go” is a difficult concept for me as I am a hoarder and a hanger on. This comes from my family, I can acknowledge that. Emotions, scenarios, regrets that are passed onto you like it’s a burden for you to live with all of your life. I have to remind myself daily that I don’t need to carry it with me and I am reminded of it when i hear of other peoples childhoods. I do not possess the power to change my past, I wasn’t given the opportunities of some and it was an oppressive, restrictive childhood. But I do possess the power to forgive and move on and change the way I feel about it.

It has been so hard in “letting go” all of the childhood feelings of the past in the last five years, my Dad’s ongoing health issues year upon year, finding out I had a half-brother, finally meeting my Dad’s family members. I feel like I’ve been the guilt and shame he has hidden for so many years yet the expectation that has fallen upon me to be responsible for him and his health has no thanks. Dementia brings out the ugly side of my Dad’s personality and all the trappings I felt as a child I am choked with as an adult. Has my mental health been affected, of course, I have been seeing various counsellors. Has my relationship been affected, undoubtedly and my partner is still here for now. Has my life stopped. Yes. I am living and breathing for my Dad. Have I lost who I am? Yes.

The tears, the anger, the guilt, the shame, the resentments have all reared their ugly heads in me and it is hard to quiet the voices of the past. The voices I thought I had dealt with. This is what post apocalyptic times are like.

Acceptance

After completing Mastin Kipp’s 40 day ‘Claim Your Power’, I wondered if I would feel enlightened with my “Creator”, ecstatic in the my “action steps” approach to following my goals and dreams; and quit my day job. Was I excited that my relationships with my partner and family were about to elevate to the next level?
I felt the anti-climax of when an acting tour finishes and you know you’re going back to reality, the next acting job hasn’t come along yet and you have to go back to those faces in your regular job which either you dislike or the job is soul crushing.

Do I listen or read these self-development, self-empowering books because I want to find the answer to what I’m not doing right, seeking the reasons why I have not moved further along in life, to listen/read to another person tell me if I’m not “working to my goals once a week, it’s a dead dream”. Is it about my dreams?

I figured through this process it’s about my approach to everything and just like juggling human nature and the personalities of friends or the dynamics of work colleagues; it’s my approach to life.

My dad was diagnosed with dementia earlier this year, I looked at the research to prove to myself I understood the levels, the stages, the ways in which this debilitating condition can take over. It’s a slow burn of fire dying out on a summer’s day, at its height it’s beautiful, powerful and sometimes uncontainable and at it’s low it’s ash blowing in the wind returning to the motherland. What am I doing about it? I’m trying to control it, the doctor is trying to control it and for the first time in my life, I don’t feel unhappy and alone. Is that strange? The support from the NHS has been great, the support from my partner has been incredible.

I’m able to take my Dad to acting classes, memory cafes, dance and fitness classes (with the help of another reluctant family member). We have got him a diary so he can write things in to remind himself of what he’s doing daily and who he’s spending time with.
The biggest impact and stress for me is knowing which are the important parts, hospital/doctor appointments etc. Since my Dad came home from Mauritius in 2014, the last four years have been applying to the council for a home, sorting his pension out, him being diagnosed with prostate cancer and then this year dementia. I wonder if life has it in for me but it’s not me it’s happening to, it’s him. I cry and want to scream and shout at the world “why is it all on me?” and it’s because somewhere along the journey, I have become the responsible adult in all situations, and the roles have reversed.  I wonder how I can put yourself first, stay on top of my health and deal with anymore? I can’t and I have to get on and find the time when I can. It’s not about complaining, it’s allowing yourself to feel frustrated and not beating yourself up for the guilt that is totally out of your control, and out of your hands.

So, back to the book, what has it taught me in isolation to this area of my life, “Acceptance”. A really difficult area to understand in it’s full limited, restrictive layers unless you understand yourself to a degree. “Acceptance” is the most enlightening area of my life right now. I find it difficult because it brings its friends “control” and “judgement” to back itself up every time but it’s my fears of this that has been difficult to acknowledge. Accepting, what I cannot change, the future. But I can change the here and now by looking at it through a different lens. I never thought I’d be talking to my Dad about his “After Care Plan”, they are ask questions, you’ve never been prepared to ask your parents before, “How do you want to receive NHS treatment, do you want to be resuscitated, do you want the doctors to give you all the medications available” and so on. About his Will and what he wants to leave to people, about all sorts, and i am glad to say thank gawd I found out about the Death cafe, because it helps to talk about death openly.

All my Dad can hear when I ask him about his personal life and history is suspicion, and he asks “why? Why is it difficult to see loved ones suffer, it’s because the conflict starts with ourselves, our views, opinions, judgements, influences. The reality is he cannot change, he’s not a man that understands how to to talk about his emotions and never really understood others. He’s complicated and has a limited view of the world because he doesn’t really engage in conversation to know who people are or understand the world around him.  So, if anyone had to change, it was down to me, I don’t want to be the dutiful daughter anymore, I don’t want to pat myself on the back and say “I was there when he really needed me”. I want to be more than this, so I realised it was time to create new memories, however short lived they might be.

I am creating new memories of fun. I never thought of my Dad as a scared, frightened, and stressed man knowing that life is coming to a close. Maybe we never really think about the time when our bodies will start to close down, and stop working in the way we hope it always will. How do you admit, you can’t remember people, places, things? How do you talk about death when you’ve never really discussed it with family?

I am really lucky to still have my Dad, he isn’t an extreme case at the moment, he still remembers, still gets about, still cognitive. I have to find ways in which he can answer questions that are too much for him all at once. I sat with him yesterday whilst putting on a TENS machine for his achy muscles and played some music from different periods of our lives and showed him old photographs. A simple action but really worth putting the time in. I recalled that all through my life at home, two of the most prominent memories I grew up with was music and photo albums. Dad had created those memories for us and now it was time to remind him of those memories and create new ones for him. It is time to have fun with him whilst I still can and because whatever time I have left, I don’t want it to be about appointments, doctors, medication and duty.

If I only had today…

Today I came home crying, I’ve been here before, losing one parent was difficult enough, not knowing how long it would take, the journey it would take and how Cancer would play out. This selfish all consuming, all devouring disease with no inhibitions or care in the world just an egotistical swipe left ghost of a figure.

Why did I cry? The next part of the journey is a different equally challenging one, Dementia. A debilitating, short term memory swiping not quite disease. Still a condition that is labelled with stages from mild to essentially “no hope”. Still not answering the question, “why did I cry?”.

Gratitude – that  I had this moment today? Grateful that I had a day with my Dad?
Self-congratulatory – pat myself on the back because I’ve done my duty and spent some “quality” time with my Dad?
Guilt – that I didn’t spend enough time with my Dad?
Relief – that if anything happened between now and tomorrow, “at least I had today”
Sadness – that I wish I could have seen the signs earlier and spent less time frustrated and angry and more time patient and understanding?
Fear – that I won’t have anyone who will love and care for me in the same way if anything befalls me?

Did I cry because every time I’m there for my Dad, he says “sorry” for taking up my time, “sorry to disturb you”. I never make my Dad feel guilty and boundaries have to be made clear, but it makes me sad and angry to think why he has to say “sorry” and if others have made him feel like a burden or a bother.

The real reason is, I don’t know why, maybe because of all of the above things, maybe because I hate this fucking life with all it’s unfair, injustice shit it places on us. Maybe I’ve had too much wine (two glasses), “maybe it’s because I’m a Londoner and I love London town…”

I chose today, I chose to spend “quality time” with my Dad because in recent years, “quality time” has meant council visits to get him a home and benefits, hospital visits to find out he has Prostate Cancer.  It has meant finding out accidentally that I have a half-brother but with so many questions that will be left unanswered for my entire lift-time. And more hospital/clinic visits to find out that he has dementia and this is the next step.

Did I choose this life? Did I choose to have these challenges in my life to make my soul a more experienced, wiser being in the next life?  To develop to a Nirvana level in this life? How could I have chosen the pain, the suffering, the guilt, the worry, the stress; how? Because I am sure I would have wanted to be in the ice-cream guilt free zone of wealth, wisdom and ignorance, no?

I know I have this immense capacity to love, to give, to care and energy to encourage, but when I walk away, I am sometimes inconsolable with an undeniable outcome. Why was I never prepared for death or just the pain and endurance that one has to go through with life’s incurable toxins. These are not triggers from my childhood, these are not previous experiences before a certain age, this is fucking real life adulthood and it’s shit.

Do I sound ungrateful? Maybe? I sound fucked off with the cards I have been dealt with and I want to throw my toys out of the pram and rant and rave at how unfair it all is. But as most people I know say “it is what it is”. Fuck those words, it seems cold and calculating, a slap in the face of no mercy or prisoners to be found here. Take it or leave it? And I have to accept the inevitable, fate of destiny.

But fate doesn’t have to be a waiting game, I look to do everything possible to enable, to give advice, to make sure my Dad can do everything in his power, while he is capable to slow the inevitable down. While doing this, I have missed on two years of living life with him, having fun with him, day trips out with him, drinking with him.

Have I been selfish in thinking “Well, I was doing my duty as a daughter, at least I was there when he needed me the most, all the appointments”. Have I let my ego get in the way to think, “I’ve said all I can”, given him opportunities and now I can get on my horse and ride off with the knowledge that “there was nothing more I could have done”. I’m an absolute idiot if I think that.

I love my Dad and I don’t want our last months or years of memories to be sat down explaining to him that he has to think now about his funeral arrangements, his Will and whatever “end of life” endeavours he needs to consider. I want to have fun with my Dad, I want him to have fun with me. I don’t want him to get all stressed with me because I’m always talking about the seriousness of every situation.

Today I took him to three of my favourite special places in North London, spaces that make me feel like home never did, peaceful, a space to think and feel/be creative EZ and Moss. A place that always makes me feel like I’m part of the family Mento, Coffee and Flowers and a place “where everybody knows your name” Oak N4

The roles in life have now reversed, it’s my turn to look after, take responsibility of my Dad.  I’m glad I had today and I need to make sure there are more days like today.