There is this bit in the Simpsons Movie where Bart says, “this is the worst day of my life” to which Homer responds “this is the worst day of your life, so far.” And it really sums up 2020, just when things are getting better; seemingly out of nowhere they go haywire again. The last two weeks have been hellish, multiple doctors visits, so many tears, Covid tests, blood, so much blood, just to name a few things. And so this brings me here… to a strange place, to a place where I tell you that – this life as a caregiver, while it has its joyous moments and I am grateful for everything it has afforded me, it is a life that is filled with sadness.
And it’s not that life’s not good, there are certainly very very good moments, and I’m very grateful for the opportunities, but this world I live in, is very sad. It’s almost impossibly sad, and most days I walk around with a smile on my face. But I want to be very honest with you, there is a well of sadness that exists, and I do not care to know how deep it is. And while I am a huge advocate that people care for their loved ones at home, for as long as possible, I want to make it clear that it does not come without its challenges. For Martha and I, as I have expressed many times, it is my greatest honour to care for her, but it will most likely be the saddest thing I ever do. Every moment of it is heart breaking, the first time she forgot my name, shattered my heart into a million pieces, the time she forgot hers, ground those pieces into dust. This journey is not for the faint of heart. And while I try to live in this world with grace and compassion, it is built on a foundation of sadness.
So why am I talking about how sad I am? It dawned on me recently that maybe people don’t quite understand that, while I continue to fill my life with stuff, and things, and people, and happy memories, that is the noise that keeps me sane. Earlier this year someone made an observation about how they sensed that I was in a deep amount of pain, I nodded along, yes, of course, isn’t that obvious? If you had to watch the woman who birthed you disappear slowly every single day, would you not be in pain? And that leads me to my latest revelation, I was recently asked to look at my values, I picked hope. Maybe a seemingly simple value, but it’s wrapped up in the hope that things will get better. Hope that after I have lived this life with Martha, that things will be better for me. Because when all is said and done on this journey, and the waves of grief that drench my body everyday become gentle waves that lap at the shores of my soul, maybe then, I will find my way out of the sadness that is this life, and I will be re-birthed into something a little more joyful. And that is my hope, the only thing that keeps me going, on this very sad and lonely journey.
It’s early, 4am to be precise, I haven’t been up long, but I’m up. It is also the perfect time to be awake. There is a stillness that lingers in the air that doesn’t exist at any other time. I think about what others are doing, sleeping, dreaming, starting to stir as spirits move freely around the land waiting for the sun to rise. There is something deeply poetic and spiritual about 4am. This morning, I’m up and worried. I need to call the doctors at 8am, and while my rationale brain can reason that I should just stay asleep till 7am, my irrational brain thinks it is best to be prepared as early as possible, so, here I am, at 4am.
It is also the morning that Teeks has released new music, again. I must admit I feel like a bit of a die-hard fan, this is not the first time I have been up at all hours waiting on and writing about Teeks and his music. There is something profound about the way he curates his word.
I am reminded of early mornings as a child, waking up to the smooth voices of Boys II Men, or Hot Chocolate reverberating throughout our house. We weren’t much of talkers, but music was our greatest language, I played the piano for the longest time, although to play it now would be a stretch. I can still feel the joy, and sadness of certain songs that are remnants of my childhood.
And then there is Teeks, not only do I feel like a die-hard fan, but I also feel slightly obsessive, this isn’t unusual for me, and is in fact, written into the DNA of my personality. Most things I read about myself dictated to me by planets and stars tell me I’m obsessive about the strangest things, the things that maybe don’t matter in any sense of the real world, but also matter in the most profound of ways. So here I am, with Teeks on repeat, at 4am.
Let me try to tell you some thing. Last year our small country floating in the pacific encountered a devastating act of terrorism, what ensued for many was a profound sense of pain and hurt. Fifty lives taken and many more affected, my eyes prickle with tears just to think of the tragedy. It was a time where nothing made sense. Like many people, I checked out of life for a while, preferred to stay silent in an attempt to gather enough strength to go on, it was a hopeless time. And one night, maybe 6 weeks after one of the most heinous crime our world has witnessed, I found my seat in the Town Hall and waited for Teeks to grace the stage. There is an intimacy in the Town Hall, and there is intimacy with Teeks. His presence is humble, quiet, there is no grandiose, he is subtle and intentional with his entire being. So I sat there and listened intently, like a child being read a story, I absorbed as much as I could. And then something happened, and I doubt I will ever be able to articulate it, much like many of my spiritual encounters it surpasses language, but it certainly was one. It was also a collective experience, I thought that the entire audience may begin to levitate. I can’t tell you precisely what it was, but it was magic. All of the hurt, the pain, was stripped from my body, and not in the way that makes you forget that it happened, but in the way that allows you to move forward with life. It was deeply healing and deeply profound.
And this is the thing about Teeks and his music, every word, every video, feels intentional, and personal, and grounding and spiritual. His words linger on the shadows of my soul for much longer than many other artists, they merge with my cells to create a symphony of spirit that runs through my body. There is nostalgia in his music, even the songs that were released just today, as if my soul has traversed the universe to them for lifetimes, and now on this day, Friday the 13th, they have perfectly synthesised into the stillness of 4am.
That’s the thing with music, it conjures up memories you didn’t even know you had. And more precisely as I listen to these perfectly curated words, I think about my parents slow dancing on their wedding night, or feeling safe in the arms of my Dad, having my back rubbed by Martha when the grief of loss is too much, all of this is so familiar, and so foreign, but ultimately, it all feels like home.
And my hope, is that in your lifetime, you find the thing that connects so deeply within your soul, that in your deepest and darkest moments, you have something to call home at 4am.
I was inspired by these words by Jaiya John, the poetic nature, the imagery, the intentional acts of Love. In my lifetime I’ve found it hard to say I Love You, not something that easily rolls off my tongue, and harder still to receive. It pierces the ears in an unfamiliar tone and I’ve never quite known what to do with the information. And in the silence of my life as a caregiver to my Mum who no longer communicates with words, I’ve found that the receiving has become even harder. As I mutter the words into the void every night I hope that one day, someday, they will be returned to me in a way which I can hold. And this brings me back to Jaiya John and his words…
This year I’ve said I Love You more times than all my life combined, and equally have received it. I’ve told my friends both real life and online I Love them, I’ve told old friends and new friends I Love them, I’ve told old Lovers and current Lovers, I Love them and every time I push the words from my lips, I mean it. I want to be part of the fertility that brings life into the world, and in the absence of my own children, this might be the next best thing. To watch another bloom is an absolute joy and to be part of that blooming, well that is where the magic happens.
But here in lies the disarray that I find for myself, I’m not used to being loved. I know it sounds odd, and as a child I was loved an impossible amount, and I appreciate that I am Loved by so many, in so many different ways, but knowing it and feeling it sometimes occur at opposite ends of a very long pole. Seeing something and feeling it are not synonymous to believing it. And so this year as I began to tell more and more people I Love them, and I began to receive that Love just as powerfully and potently, my ground began to soften, and little by little a garden has begun to grow. And for the first time in many moons, and perhaps even a whole lifetime, I feel deserving of Love, in its many and ever changing forms.
Life is complicated, and through my many laps around the sun I have become even more discerning about who and where I place my energy, but as I begin to look at the next lap, I wonder if I will find more places where Love can bloom. My friend recently got married, she signed her email off with LOVE IS EVERYTHING, and to know that behind the tapping of keys, as I imagine she pressed caps lock, that perhaps tears welled, and her heart beat a little faster that her garden of Love was blooming and overflowing, Love is everything, and I can’t wait to see what gardens we can all grow together.
I Love You,
Gathered Words (part 1) is a small collection of poems and musings inspired by My Mum Martha and her courageous journey with alzheimers. This is also the beginning of the final step into publishing a novel which I have been working on for the past 5 years. My hope is to beautifully articulate the journey that Martha and I have been on while we try to make sense of each other, alzheimers and the world.
After a trip away recently I found myself able to connect back to the creative part of me, and also realised that 1) I need to take better care of myself and 2) given some space, time and freedom away from the chaos of life I can fully drop into my creative self and write write write! Which brings me here… the profits from this book will go towards a writers retreat, I’m not sure when or where, but I trust that the Universe will put me in the right place at the right time. Thank you so much for being here and I cannot wait to continue exploring this place.
If you are interested in getting a copy then please click here, or go to the Gathered Words tab at the top.
Always with Love,
Kyrin & Martha xx
Welcome to the Bloc Cafe. This is one of my fave places to visit with Martha and gets the tui of approval for being Dementia Friendly, so let’s talk a bit more about it.
20 Normanby Road, Mt Eden, Auckland, Level 2.
Monday – Friday 730am – 3pm
Saturday + Sunday 9am – 3pm
09 630 0102
Instagram: Bloc Cafe
Best time to go: I would recommend heading there earlier in the week as the weekends can get pretty busy, but even if you do get there on the weekend I find there is always a table or 2 spare.
Location: In the back streets of Mt Eden moments from Maungawhau itself sits Bloc, a beautiful multi-storied building housing some of NZ most beautiful brands, and evidently Bloc Cafe. Easy to find, easy to access, off the main road.
Parking: The parking is great here, if you go on the right day. There is parking off Enfield Street, its Level 2 of the building and there is maybe a dozen parks inside. This will take you directly to the cafe, no stairs or anything like that to navigate. Even if there isn’t a park immediately it isn’t a long wait until one comes available. There is also parking on Level 3, a few less parks and obviously you are on Level 3. But, if you need to park here and stairs aren’t something you and your loved one can navigate then thankfully there is a lift. When you enter level 3 it is to the right of those doors, you can also ask the friendly staff at BoConcept to point you in the right direction. Other than that you can find parking on the street, but more often than not Level 2 is where it is at, they have a mobility parking space as well.
Access: If you have parked on Level 2 parking then the access is so easy, big double doors to go through and the cafe is on your left. It is a very easy space to navigate.
Layout, atmosphere, seating: These are all great. They have a really nice layout and there isn’t so many tables that you are crammed in and can’t move. Because it is part of a complex it can get a bit noisy with lots of people moving between the 3 levels, however, Bloc Cafe have a beautiful space behind the counter area with half a dozen tables and a beautiful view. The music is never overpowering and you are seated far enough away from people that you don’t feel like you are part of their conversation. It has a very clean, and minimalistic look.
Tables and chairs: There is a combination of bar stool type tables and chairs, and dining style table and chairs. The tables are comfortable, and the chairs are really easy to sit in and move around. Martha often has trouble moving her chair in, these chairs are really easy to manoeuvre and get her in and around so she is close enough to the table.
Menu: I cannot say enough good things about the menu here. They have a “build your own breakfast” menu and honestly, I wish more places did this. I can order just scrambled eggs by itself and that is perfect for Martha, they also have a really delicious selection of other menu items, and cabinet items. My go-to order is 2 poached eggs on cornbread with a side of either mushrooms/halloumi/bacon, and on a great day all 3. They have delicious banana bread, ginger loaf and these AMAZING homemade marshmallows, 50c with a hot drink or $1 without. I find that Bloc Cafe is extremely affordable and has something for everyone.
Bathrooms: The bathroom is located on level 1 of Bloc so you will need to take the elevator or stairs to access the bathroom, but if you take the elevator then you end up right outside the bathrooms so it is very convenient. The elevator is towards Enfield street, so not far from where you are sitting at the Cafe. The bathrooms are beautiful and fitting for Bloc, and they are decent sized. You can certainly fit two people in them, a wheelchair or walker if needed. The bathroom, if you take the stairs is towards the back of level 1, behind Father Rabbit.
People: The owners here are the loveliest people, and they staff are always friendly and helpful. They always have a big smile for Martha and ask her how she is. I really appreciate when people engage with her in that way. The other patrons are not in our demographic, but we have never had any issues, comments or concerns.
Shops (a bonus): There are many beautiful shops here including Father Rabbit, Alex & Corban and Citta, if you feel like a browse and a little retail therapy. Everything here is carefully curated and there is lots of space to move around in, I never feel like I can’t move around in the space.
I hope this is helpful, and if you ever want to meet for a coffee/meal/talk lets head to Bloc Cafe!
Kyrin + Martha xx
What makes somewhere Dementia Friendly? A question I have been asking for 7 years and now I’m starting to answer. I’ve thought about it a lot, mostly in retrospect to places I visit frequently, why do I go there? First and foremost, the people of course, the atmosphere and the ambiance of a place has such a big part of the choices around where to dine, but with Martha there is more to consider than just how nice the people are, so I am wanting to create a place where I tell you about all the beautiful places that we visit and that are accomodating to our needs. There is now a tab where I will add them all in. But, here is a little rundown of the things I will be covering.
The Location. Location is pretty important, since we are based in Auckland most places I talk about will be here. But, location plays a big part and of course each thing feeds into one another, location, car park, accessibility. All pretty relevant to determining if somewhere is Dementia Friendly!
The Parking. This is really important, even if you have a mobility parking pass, some places are just easier to get too than others, stairs, slopes, gravel vs. pavement.
The access. Again much like the parking this is so important to assess, are there any stairs to get in, is there a slope, are the doors wide enough, is the carpark close enough?
The layout, the atmosphere, the seating. Navigating spaces can be a challenge even for the able bodied, able minded, a lot of restaurants and café’s like to pack you in – on of course they should be – but if you are dealing with slow shuffled movements, wheelchairs, walkers then navigating a space can be even more difficult. Equally the atmosphere plays a big part, how loud the music is, how close you are seated by someone, the temperature all play a huge part in the experience to being Dementia Friendly.
The tables and chairs. This isn’t something I have ever thought to be relevant, but really it has been in our journey. Martha’s comfort is always my top priority, is she comfy on her seat, is it easy enough to get into and out of, is it the right height and close enough to the table.
The menu. Over the years, especially since Martha doesn’t have any teeth, navigating menus has been challenging, who wants to pay $12 for scrambled eggs when she isn’t going to eat anything but the egg! Also as time goes on I have discovered that simplicity is the best policy when it comes to Martha’s diet. Finding affordable, delicious, easy to eat food is important, as food is such a beautiful pleasure even with a disappearing memory Martha still finds a lot of joy in the food she eats. Also drinks are a big one, and do they have straws??? Cringe I know, straws! But most places now offer an alternative to plastic straws, either paper, glass or metal (I usually try and have one with me anyway) but sometimes drinking when you have Dementia can be difficult.
The bathrooms. If you need a bathroom, where is it? Is it easy to get to? Is it big enough for 2 people? Is it wheelchair / walker friendly? All important questions that need to be answered when considering if a place is Dementia Friendly.
The people. And lastly, my favourite bit, the people. Are the staff nice? Are they accomodating? Are the general population receiving? It is so complex, and probably the hardest of them all to answer, I have also been fortunate enough to have some really beautiful experiences with Martha in cafes and restaurants purely because of the people.
My hope in all of this, is to connect caregivers and their loved ones with places and spaces that are accomodating to the challenging needs that caregivers have. It is hard enough to be in that role and sometimes the need to go out and feel normal can be pretty challenging too, so here we are, finding all the places that are delicious, safe and comfortable for me and My Mum Martha.