Gathered Words (part 1)

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

Bloc Cafe

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
www.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!

Much love,

Kyrin + Martha xx

Dementia Friendly Places + Spaces

Image via Pinterest

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.

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?

30.03.20

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