Absence

Presence

Ninety percent of what I say at the moment are simple commands;

“eat your food”
“drink your water”
“come on”
“sit down”
“stand up”

On a good day it is peppered with “please”, “thank you”, and “you’re such a good girl”, on a bad day they are short and sharp, they hold any manner of things, anger, rage, frustration, loneliness, sadness, hopelessness.

This is the bulk of what I speak, often repeating each command 20 or 30 times, not knowing when and if it will land.  It’s exhausting. I’m exhausted. I crave conversation, but I can’t talk on the phone or facetime anymore, that is also exhausting and I didn’t anticipate that, that in all of this, I would feel exhausted.

I’m grateful for technology, that it is so easy and simple to connect, and I appreciate that a lot has gone into making sure that our mental health is made a priority, but I no longer think it is simple as that. There is something unnerving about only being able to communicate through FaceTime or Zoom, as Petriglieri (2020) states “It’s easier being in each other’s presence, or in each other’s absence, than in the constant presence of each other’s absence.” There is so much language that our bodies speak, transform, transmute, block, dismiss and now with the absence of physical presence reality is becoming harder.

So I am left with my simple comands, and with talking aimlessly at the cat. And that is something that over the years I have become more accustomed too, but it has not made it easier, the routine of loss does not make loss any less painful. As Martha’s memory fades, as do her words and abilities there lies a deep loneliness of being in a persons presence while they are living in their own absence, and perhaps this time of covid-19 is an amplifier to that. A reminder of the need for interaction, because much like Petriglieri discusses, I am in the constant presence of Martha’s absence.

There are rare occasions when she is present with me, but they are fleeting and flickering, it may be a flash in her eyes, her ability to respond, and my work is in drawing these out. Searching for them as though they were precious diamonds, and so I offer my simple commands to her in the hope that one sticks long enough for her to complete the task, and when she does I am momentarily triumphant. Because with so much of the world stripped back it is finding success in the smallest of things. Because I, like so many others are craving meaningful interaction, which isn’t deep or therapeutic in its words but in presence, a lingering hug, a squeeze of the hand, the ability to talk in roundabouts. These things seem which had so little meaning before are now the thing I crave the most. And when the world shifts again, and we are allowed closer than 6ft I hope we can embrace and understand the deep importance of being present for each other. For holding each other, and talking nonsense, and I hope we can rejoice with each other, and that our bodies are able to return to communicating all that, that goes unsaid.

Kyrin xx

What will we lose?

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I’ve become somewhat accustomed to loss, as humans I think we often tend to push our losses to the side and not deal with them, but as a caregiver I am constantly dealing with loss. It started with the loss of my Dad in 2013, and since then it has ranged between a drop of loss and a waterfall. The loss of my Mother-figure as I knew her, the significant loss of loved ones that I have experienced over the last 6 years, the loss of jobs, friends, lovers. These are the big losses, the losses that people give you the most condolences for, then there are the smaller slower losses. The loss of Martha’s memories, her ability to cook, to hold a conversation, to dress herself and help out around the house. Then there are the smaller losses, the losses that you may not recognise but are a big deal to me, the loss of mobility in her mouth, her loss of eye focus, the steady and gradual loss of words, the loss of control in her hands, but now we are all in an interesting time, in some way, shape or form we are all experiencing loss.

Thousands of people across Aotearoa have lost their jobs, lost incomes, lost dreams and what the future would look like. One person in Aotearoa has lost their life because of covid-19 and I pray that number stays that small, but I’m doubtful it will. And, for the first time in a long time I feel scared about the losses we are yet to see. My fear comes in waves, I’m scared for Martha and I, if she were to catch covid-19 she most likely would not make it through, I’m scared about her loss of mobility as life as exponentially slowed down, and I’m scared about the losses that won’t get talked about.

Alzheimer’s is a disease centred in loss, in its most simplistic form it is about memory loss, caregivers and loved ones will tell you it is much more than that. And in this time of our lives it has hard to know what the impact of this pandemic will have on our community who experience alzheimer’s. I worry for many that a month (most-likely more) will have a devastating effect on those who are separated from their loved ones during this time, in my experience whilst Martha loses her memory what keeps it available to both of us is consistency, and routine. Seeing me everyday helps to keep her memory alive, at this point that is the little solace I have to hold onto, her look of recognition when she hasn’t seen me for a few minutes is what brings me so much joy, but I am under no illusion that one day I will lose that too. But while I still am able to care for her, that will not be today.

In 2016 there was a reported 62,287 people with some form of dementia, many thousands of those people will now be in permanent care in dementia facilities throughout Aotearoa. They will, like everyone else, be in isolation, separated from the people they loved and the people that love them. This is a scary thought. I know firsthand what this has looked like, I have felt the significant loss of Martha when I have put her into respite for long periods of time, she is slower to recognise me, sometimes unable to do the simple tasks she could before she went in. And now my heart goes out to all of those who will face this reality once this period is over. The heartbreak that friends and loved ones will experience as a little more of their person has slipped away without them getting the chance to mourn that piece of them. I know for some people there will be the harsh reality that perhaps the next time they see their person, they may not know them at all.  Covid-19 is a mighty disease, something I hope to only witness from afar, it will take lives, it will take jobs, it will take homes and it will take memories. But as a long-serving caregiver I know that it won’t take my memories, and it won’t take yours. Kia kaha, kia maia, kia manawanui.

Mauri ora.

Kyrin xx

Hine

One day you will become the embodiment of atua wāhine.
It will be in the surrender that she makes her home in you.
One day she will arrive and settle in your soul,
early on you will go to war with her;
How dare she come into your house!
Most days you will not even know she calls you home.
She will wear your skin with such familiarity,
and yet you will feel so foreign.

Somedays she will leave you be,
At first you will enjoy the reclaiming of your home, but
after a while you will feel lost without her,
you will sing her name in your tears…

One day she will whisper “I love you”
Her love will flow from you
as powerful as pele creates new land.
Her love, becomes your love and
will reach everyone and everything… and then
one day Hine-nui-te-pō will call her home, and
you will journey with her to the depths once more.
Returning to a place you’ve always known.

From a lifetime ago xx

With a little help from my friends…

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Kia ora e te whānau,

It has been a while since I have updated this blog, things have been increasingly busy and unfortunately stressful. This year has seen many ups and downs, one was having to move from the home we had been in for 5 years. Fortunately, we found a beautiful new home within our price range, in the same area we were living in. It is a beautiful house with wonderful views and lots of lovely birds.

However, what I wanted to write about is the recent predicament I have found us in, our funding with the ADHB came up for review in August, for the past 5 years we have had access to 52 days of respite which was partially funded. I was able to afford the partial funding and made it work. This year the ADHB made the decision to reduce the number of days of respite we have available and increase our cost, thus making respite unaffordable. For mine and Martha’s safety and wellbeing access to respite is crucial, having the ability to have a night or 2 off here and it is invaluable, and the thought of not being able to access this is very scary.

So after some consideration and lots of talking I created a give-a-little page to ask for a little help from our amazing community. I now have between a $60 and $200 shortfall for every day I get respite for Martha, ideally I have upto 4 days a month to have for myself and to do things I need to do. Whilst I can maintain this cost for the next few months by using our savings it is not sustainable over the longterm. I do hope that next year I will hopefully be in a better financial position, but for now I need to navigate the next few weeks of caregiving.

So here it is, I am asking for support to raise around $2000, this will get us through to the next few months and then we can reassess. It’s hard for me to ask for help and so I feel proud of myself that I am reaching out and asking. Everything and anything helps, I am so grateful for all the support thus far and I wish I didn’t have to ask, but I do believe that caring for Mama at home is the best option for her and her quality of life.

Here is the link: https://givealittle.co.nz/cause/help-me-look-after-my-mum-martha?fbclid=IwAR2_mvcz7Hq1DCcXrU9UkHcxvbyZJP8Dz48Jz5eKpd0dAoyOn5AFrsHUbTI

Thank you so much for the ongoing support! Always with Love, Kyrin and Martha xx

 

Grief, loss and alzheimers

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In 2013 I had my first experience of grief, true, moving, heart-wrenching grief. It was a time in my life where I wasn’t sure if I could carry on. Simultaneously I became a carer to Martha, I supported her through her grief, I remember on the 2nd morning of Dad passing, his body laid out and Martha nestled against the coffin, she woke up in shock, confused about what had happened, needing explanation. I had to tell her, yes, what she knew in her heart was true, her husband had passed away.  Over the next few months, we journeyed like this, dancing with grief and loss. I explained her husband died, she cried, she forgot and so the cycle repeated.  I didn’t do my grieving until early 2015, I lost a job and everything came to a head. My heart was imploding as I faced this impossible task of life, up until this point I had a purpose which was wrapped up in my monetary value, without that I knew nothing of surviving life. I had been reduced to my carer identity, I was an unwilling participant in the caregiver role, and now I had found myself in that role permanently.  I survived the grief, I grew from the grief, I journeyed in the grief and found the parts of it that made me who I am, I believed I would not face grief again until Martha left this earth.

Over the years I have learnt to manage my grief and sadness with Martha, when I smile she smiles, when I laugh she laughs, when I’m angry she is angry, and when I am sad she is sad. She is overwhelmingly sad, her eyes tear up, her bottom lip drops, she is confused and heartbroken. She absorbs emotion like a sponge, I reserve my tears for quiet moments alone, showers, bed, car rides alone.  When news began to break of the March 15th terrorist attacks I could not contain the grief. It spilt into every part of me, leaking out in sobs, tears, uncontrollable rage.  I was heartbroken, devastated, cycling through the stages of grief. The world as I knew it was changed forever and I could not stop the tears from flowing. Martha cried with me, not knowing what the tears for her, her heart ached, her soul bled just as mine did, I could not contain the devastation that was erupting and I could no longer protect her from the grief.  The common misconception is that people with alzheimers have no worries, don’t experience the same things we do, this, in my experience, is not true. Martha feels everything, she absorbs the happiness as well as the sadness. She can’t translate anything into words but she transmutes pain into love. The beauty of having no judgement, no hatred, no thoughts is that life is lived on a wairua level. Grief is a time when I can’t hide my emotions, instead of holding so tightly to them I have begun to let go. I wrap my grief tightly around me, keeping it safe from Martha, but as I learn and grow in my emotional capacity, I am learning to allow Martha into this world, to use her superpowers to transmute pain into love.

Always with Love,

Kyrin x

Dealing with S**T (some tips)

10347478_10153016996002679_7955103008461057598_nToday I picked Martha up after a 5-night stint in respite. It is a funny space respite because on one hand, I feel relief from the day to day pressures of being on a caregiver, but that is quickly replaced by the anxiousness of the quality of care in her care home, by worrying if she is ok, if she is being treated well, the list is endless and all-consuming. Picking her up from respite brings about the relief of one anxiety and is replaced by the next. It is an endless cycle.

Back to my original point, today I picked her up. And within the space of about 3 hours, she has had 3 bowel movements. THREE BOWEL MOVEMENTS! Hence the title, dealing with S**T.

Dealing with an adults bowel movement is one of the most challenging experiences to date, there are many ick factors to it, a lot of disinfectants and many many showers. It is one of those things where just when you think life couldn’t get any harder, life literally shits on you. In everything there is always a learning moment, whether that is learning the limits on what you can handle, learning boundaries, patience, kindness in the worst moments, there is always a learning. Today I learnt that I am more resilient than I thought I was. Today I learnt that no matter what if shit happens you always keep cleaning it up – regardless of how tired, lost, grumpy you are. Today I learnt that having lots of gloves/plastic bags (biodegradable of course)/disinfectant and spares close is going to save your life. So here is a list of tips that will help you if you are in the same situation!

  1. Get yourself some disposable gloves and get lots of them. This was something my dear friend Hana told me many many moons ago, I will never ever forget the sense of relief at how practical this tip is.
  2. Keep plastic bags everywhere, you never know when you are going to need them, they are hand for so many things. Not only keeping soiled clothes/diapers but also as makeshift seat overs and protecting yourself from yuckies.
  3. Always keep candles/incense handy. Seriously, this has saved me countless times. I now burn incense every time we have a bowel situation. It keeps me from throwing up, it’s like an added layer of protection.
  4. Don’t be too hard on yourself. If you have to leave the person you’re caring for in the shower for a few minutes while you step out and get some fresh air. DO IT. This is a terrible situation and in all of this, you gotta do you.
  5. Treat yourself to some really good smelling hand soap and hand cream. After all this your hands are going to be wrecked, I wash my hands what feels like 100 times after one these times, so having nice smelling soap and hand creams have been a lifesaver.

    and last but not least…

  6. Take care of yourself… be kind to yourself… because you are doing great!

Always with Love,

K xx

An update…

It has been a while since I have written, I have a lot of half written pieces of prose. I have been dealing with my own depression this year, as I move forward in my life with my study and career, Martha’s life is really slowing right down. I have had a hard time coming to terms with that. As I have said many times before I know the outcome of our situation, one day Martha will no longer be in my life (in physical form) and now as we almost complete our 5th year in this role reversal it seems even more unimaginable how I will continue to move forward without her.

But this post is not about that, I wanted to share some updates with you on Martha’s progress. While I may going through my own depression, Martha continues to thrive in her happiness. In our nearly five years together as caregiver/cared for this is probably one of the consistently happiest times of her life. Her smile lights up a room, her hugs connect you with the spirit, her comfort soothes the soul, her compassion and empathy heal. She is truly filled with Love, and all she has to offer is Love, sometimes I feel so undeserving of her Love as I force her to shower, or eat something she does not like. She has no capacity to hold a grudge, to want revenge, she is always present with me.

On an external level of progress, her Doctor’s are really happy with the way she has progressed.  While she has lost a lot of her speech and isn’t able to have a conversation, she still understands and recognises people, is no longer having delusions and hallucinations and really has no other health concerns. She like a lot of 70-year-olds is slowing down as a part of ageing but otherwise, she is healthy (that we know of).

One of the trickier aspects of Alzheimer’s has been the medical stuff. Finding out the underlying cause of infection is not as simple anymore, and I have had to find my voice when it comes to advocating with Martha. How do you give consent for someone who doesn’t know what is happening? Will this procedure improve their quality of life? About 18 months ago we had a situation where her blood tests continued to show abnormalities, we were told she potentially has cancer. After much consideration, I decided not to proceed with any further testing because… what would be the point? The Alzheimer’s would not improve and possibly be made worse by the invasiveness of testing, and how would it affect the care I am able to give? Here we are now, her health has not decreased, she is not suffering, she is happy.

She is happy, and we are happy. A few years back I think I enjoyed the pity sympathy that others would offer, I would get a lot of “you’re so young to be a caregiver..” “I’m sorry this is happening for you..” However, over the past few years, I no longer view it as that and feel a sense of anger when people offer me their sympathy. Don’t feel sorry for us, yes, Alzheimer’s does suck ((it’s the fucking worst)) but it has also afforded us many wonderful opportunities that we otherwise wouldn’t have had. But I will save this for another day!

As always, sending out so much Love from Me, Martha and Alzheimers xx

“If you resist it, it’ll be cruel to you, if you let it in, it’ll be magic”

P.S – I am hoping to get back into writing again! So keep watching xx

Blessings in everything

Six months ago the thought of calling alzheimers a blessing would of filled me with rage. How dare those words tumble from someones mouth so ostensibly! Alzheimers is not, in any way a blessing.. and yet I uttered those exact words a few weeks ago to someone I didn’t know, she looked at me with pity in her eyes..

“But, you’re so young to be a caregiver..”

I replied, “blessings in everything..”

“Well” she said, “that isn’t true. It isn’t a blessing, really?”

I thought about it for half a second, and then politely disagreed with her. It is true, there is a blessing here.

The blessing is that I truly understand what Love is, I have been witness to the purest form of Love, Love that has no boundaries, no fears, no judgements and it has changed my life fundamentally.

I remember watching Martha, she spotted a man at least 20 metres from her, I instantly knew she was going to hug him. She charged ahead and before I knew it, she had enveloped him in her Martha way. As I caught up, he was in tears, they were uncontrollable as Martha kissed his cheeks and held him. I knew then, from that moment that I was truly in the presence of Love. She stood with this man, communicating with him only in her energy, communicating with him by her embrace that she Loved him. It is truly something to see what unconditional Love looks like, it isn’t for everyone, it can also be really scary for some. I think as we move through the world we become a little more weary, Love comes with lots of different conditions. I have seen people be skeptical of Martha, stand back from her, her energy only ever so slightly touching the surface of theirs. I have seen others fall into her Love, absorb it as quickly and as much as possible. I have countless stories of how beautiful Martha’s love has been, how healing it has been. I have seen her embrace people as if she has known them for years, having only spotted them as she walked by.

It is an odd thing to say, we are better off with alzheimers. I would never wish alzheimers on anyone, but the lessons I have learnt have been incredible, the connection I have now with Martha is the most intense it has been in my memory, perhaps what a new Mother experiences with the release of hormones as she holds her baby for the first time, realising that she didn’t know she could love someone so much. This is how I feel now, as if I have been given the greatest gift. I have been given my Mother, to Mother.

Don’t get my wrong, of course it saddens me that she has alzheimers, alzheimers is cruel and unrelenting, but it also surprises you, teaches you, pushes you to places you never thought you would go. It will consume you to the darkest depths, but it can also send you to places you never knew existed. I have felt the super power of Love, a place I did not know existed until now.

When I say blessings in everything, I truly mean that. Alzheimers is not a blessing, but it has been.

Much Love,

K xx

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When the Universe speaks, you listen

I experienced my first ‘real life’ connection to the Universe a few years ago, I still remember it as if it was yesterday and can still bring about those feelings when I think back to the time. It was insane. It still makes me get shivers and it lead me down a path of no return. I was shown on that night the true purpose of my life, and whilst I can’t articulate that purpose to you, it resides deep within me. In that moment it felt as if my life was so minuscule and expansive that not a single thing could contain it. For the first time in my existence I knew and understood that I was part of the universe, and that the universe was part of me. For the few following days I continued to be connected to the universe, I saw my ancestors, I sat with them, ate with them, and bathed in the waters with them, I learnt from them and took their offerings. I saw my life lay bare in front of me, showing me its realness.

I have not had the connection for a long time, I have sought it time and time again. Searching under rocks, in sand, through puddles and oceans. I have sat deeply in search of it, I have had it blow through me but never stick, I have written and regurgitated it. I have sniffed it, tasted it, teased it but not once have I been able to hold it firmly in my hands.

I know that it is there, waiting for me to hold it once more. I can speak fluently about it, as if I was connected to its language, I can talk on it, tell you what it tastes like, smells like, feels like and yet I have not been able to conjure it up again.

Until tonight. I attended an event, it was a great event, derived of connection, but it was by no means a place where I thought the the universe would sit. It was held in a building, 50 or so people contained within walls, weak walls that meant you could hear the clanking of bottles and clapping of hands of a different crowd having a different experience through its thinness. And yet, here on this hard seat, amongst strangers, I was having an experience. A true and enigmatic experience. It wasn’t until afterwards, and even until I allowed this to flow from me that I realised what it was.

I once again got to hold the Universe..

I stood in a room of greatness, of Men and Women who are great. I listened to speakers who were experts in their fields, I listened with the ears of a new learner, I absorbed, reflected, deflected what was being said. I mixed, I hugged, I connected, I praised. And as I hurried away, needing to retreat to my reality I realised… I stood in a room of greatness, because I am greatness. I stood with the Queens and Kings of my realm and experienced a universal download in which I listened and heard the universe, in all its infinite wisdom say to me.. you are great..

And I realised again, that if you truly listen, if you truly look, you will see that the universe is speaking to you, that your God is speaking to you, that the blood that flows through you is speaking to you, and that none of these things want for you to struggle, none of those things want for you to suffer, the true want of the universe, the true want of your God, the true want of your blood, is for you to sit in your greatness and experience yourself as the Universe, to sit in your service, to sit in your purpose and to truly know that you are part of the Universe, and the Universe is part of you.

This might just sound like the ramblings of a mad woman who hasn’t had enough sleep, but for me right now, this experience is fuelling me, to continue seeking connection, to continue seeking life and to continue listening to the Universe.

Thank you, Universe.

K x

“If you resist it, it’ll be cruel to you, if you let it in, it’ll be magic..”

2017 won’t be great..

This time of year thoroughly excites me, the anticipation of a new year, new beginnings, it is a time to create goals, set intentions, and make lists. There is a certain promise that comes with the rising of a new sun attached to a new year. Each year I diligently plan ahead, what do I want to achieve? Who do I want to be? I add the same few things to the list that I have been etched in the resolution hall of fame since the dawn of time, lose weight, save money, drink less, and then I get to think about what else I want from the year. Each year ending with the resolve that the next will be amazing, different, better. I’ve only  had a few amazing years in my time, maybe two that I could say were the best years of my life and whilst I still hold that same anticipation and excitement as we welcome a new year, I know that 2017 won’t be great.

Don’t get me wrong, this year gone, for all intents and purposes was a good year. I launched a new business, I started back at uni, I re-established my life after 2 and a half years of grief and loss, and while I professionally propelled forward, excelling and achieving at every step, my darling Mother did not. She got worse, progressively worse and with each step it got harder, the suffocation of Alzheimer’s gripped us both and we both struggled, Alzheimer’s did not treat us well this year. This is the way it will be until her death, a downward slope of loss and hopelessness, and then I will encounter the grief of death once more. And as I type I think, how can I continue? How can I move forward with this looming over me? The answer is, sometimes I don’t want to, sometimes I cry and scream and shout and hurt, but most times, I don’t have a choice. Neither of us choose this path, and no one would ever want to be on it, but now I as I walk this path with my Mama, I do have a choice, and that choice is to walk with her till the end regardless of how hard it will be.

Of course I would love a better year, I would love a great year! I am planning, mapping, I have many things to look forward to in 2017; study, my flourishing business, holidays, but I hold no hope that the year over all will be great. This you might say is a little pessimistic, and perhaps yes, but I have learnt my lessons. Grief and Alzheimer’s do not make for good years, Alzheimer’s in particular will not treat me kindly this coming year, and it would be ignorant to think so. Alzheimer’s as you know, as I have written about over the past few years is a cruel beast, and with every passing day it seems to lurk in the background, waiting to take its next piece of Martha. It will take from her until she cannot take it any longer, there is no medicine anymore, there is no miracle, and there is no hope.

So I sit here thinking about the year that was and the year that will be, and it is ok that 2017 won’t be great, because, perhaps as we age and become wiser the years no longer need to have that glow. Perhaps they can just be the indicators of things we’ve gathered along the way. Maybe this year I will learn to scream and shout less, perhaps I will learn to heal my heart enough so that the next time it is broken the pain is not so severe or perhaps I will learn to be grateful for the small things, for the small miracles the occur in everyday life.  For now, I can’t say what I will learn, but I look forward to finding out.

Bye to 2016.

Love, K xx

“if you resist it, it’ll be cruel to you, if you let it in, it’ll be magic”